Talk:Morgellons/Archive 12

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Not sure how we can say it's a "delusional belief" when the CDC says

"But the study shouldn’t be interpreted to conclude that the problem is all in sufferers' heads" (ref.9)

The CDC refers to it as an "unexplained dermopathy". If they don't say it's 100% delusional, how can we describe it as such in the lead? The reference for the first sentence isn't the actual CDC report. — Preceding unsigned comment added by Dkspartan1 (talk • contribs) 23:46, 17 September 2014 (UTC)

The lead doesn't say that the problem is all in sufferers' heads or that it's "100% delusional;" it says they hold the delusional belief that their symptoms are caused by infestations of fibres or parasites, which is consistent with the cited source. Cheers, Dawn Bard (talk) 01:30, 18 September 2014 (UTC)

(edit conflict) The source for the first sentence is from Clinical Microbiology Reviews, so I'm a little confused about what the problem is. The quote you're referring to, from a single doctor in a popular-press article, is only used to emphasize that hasty conclusions shouldn't be made. The CDC is a good source, but I'm not sure why we would ignore the numerous other sources that classify it as delusional parasitosis, cited thoughout the article, to give special emphasis that single point. Grayfell (talk) 01:33, 18 September 2014 (UTC)

We should not ignore multiple sources, but while there is no conclusion drawn by such as the behemoth CDC then we should not lead out with a conclusion that this condition is delusional. Should the case be that it ISNT a delusion, it would not be the first time that there was overwhelming resistance in the sciences to accept an idea that seemed out of sorts with consensus. As I recall the concept of washing before operating was regarded as time wasting quackery by multiple credible sources when it was first proposed.-S.Rothstein — Preceding unsigned comment added by 2602:306:BCEC:1800:DC7:3CE5:F457:E5D (talk) 04:18, 9 November 2014 (UTC)

Dkspartan1, you need to log in, every single time. You have been warned before about this. Socking is not allowed.

We follow what RS sources say. We don't use a

talk

) 06:27, 9 November 2014 (UTC)

Disgruntled clutter
The following discussion has been closed. Please do not modify it.
I strongly believe and suggest that this article be removed. While this talk is erudite enough to presume at least familiarity with the condition, it is woefully absent in anything useful or research-driven. The author obviously espouses the dog-tired party line which does not account for the latest research and does not credit the thousands of anecdotal reports from those who have suffered the skin and systemic infiltration of the moving threadlike, polymer oozing, metallic black speck extruding, migrating, brain raping organisms found in cystic lesions on the skin, crawling from the eyes, the vagina, the rectum, the pores of the skin. In humans and animals. The organisms have been described as actual 'bugs', for want of a better word, visible to the naked eye and seen in great and alarming detail in electron microscope scans. It defies belief and no one, no one who has seen first-hand evidence could ever again dispute the reality of this condition. While there is no definitive lab test, and no agreed upon cure, and because it is an enigma, it still should not be lazily relegated to 'delusional parasitosis', which is a very rare condition. Compare the small number of diagnosed parasitosis victims to the millions, yes, millions of sufferers who know quite well that they are not imagining it. This article does a great disservice to those who are desperately trying to understand their alarming condition and come upon this very skewed article that could be taken on faith as a trusted scholarly work. Morgellon's victims are desperately sick, terrified, in pain and consistently denigrated, insulted, and not even examined by the medical profession, but immediately lumped into the 'delusional' box and treated as hysterics or drug abusers. I would provide references, but there are plenty of Google hits from biomedical professionals who have thoroughly researched and examined the variant species seemingly involved and they are still bewildered. Bewildered, but convinced it is no delusion. I won't begin to go into my and my husband's horrific experience, but we certainly did not imagine the obvious infestation of our cats, or their subsequent lethargy, pain, anorexia, stiff black hairs covering their bodies and extruding out of their paws. From what I have researched and what seems to me the most logical explanation is that it is a fungal mediated condition. It is not a fungus per se, and the insect like creatures, which are not always the same species, may be introduced via a fungus, identified or not, which acts as a vector. Any other disease vector can also be suspected. I hoped to not go into my husband's and my experience, but it has to be said. We were unknowingly given a bed that hosted bed bugs, a known disease vector. It was during their infestation that our symptoms escalated and diminished when they were gone. The breaches in our dermis from their bites invited opportunistic fungal organisms, as well as definite insect/worms, black, white and blue moving threads and metallic specs into our skin, ears, nose, eyes and intestines. We also had a black mold infestation which provided an ideal environment for opportunistic fungi. The spores shooting from the lesions on my arms were identified as aspergillis fungi. The other creatures were surmised to be a type of collombola and a non-typical variant of Pseudomonas, but this was not confirmed. These findings were privately conducted. Out of six doctor-submitted lab samples of organisms, skin biopsies and fecal samples, only one survived. The carcass that had shed copious black threads that was pulled from a my skin lesion was reported to be a 'never having lived polymeric substance which appears to have a tubular encapsulating form'. Basically, a plastic tube. However, these organisms have been shown to be largely polymeric. The threads were never mentioned and when asked to reexamine the threads, were told the specimen was 'lost'. Just like the other five lab submissions -- all 'lost'. I was told by a respected biochemist (whose name shall not be divulged) specializing in tropical diseases that he's seeing non-tropical regions being infested by fungal organisms through their trans-migrations into the warm, humid conditions of our homes and bodies. He said that the AMA has strongly discouraged health care workers to deny the existence of 'the thread disease'. Doctors are regularly ridiculed, threatened the loss of their license and warned not to submit or pursue laboratory investigations. As for more of the fungus connection, floods of miniscule shrimplike insects poured from our faucets and swarmed in our house. They were identified as 'fairy flies' or 'fungus flies'. These creatures were found in the cysts in my lesions. We were also invaded by intestinal parasites. Many different as well as puzzling parasites were quite visibly present and alive in our feces. While bed bugs and fungal conditions may suggest a possible source, there is nothing that can prevent or cure its resulting activity. This condition is not confined to just the obvious skin insults, but is systemic and is introduced and parasitically maintained in and from dysbiosis in the gut and the resultant compromised immune system. This is where first-line defense should begin, however, there are no guarantees. But please, 'delusional parasitosis' is now yesterday's news, rapidly losing credibility even with hard-lined nay-sayers. This article needs to be seriously revamped if not removed. — Preceding unsigned comment added by 2602:306:bc80:f030:85dc:73c4:5581:5373 (talk • contribs) 23:36, December 6, 2014‎ (UTC) We base our content on reliable sources, not on anecdotes. Your comment contains numerous inconsistencies and self-contradictions, which seems to indicate a problem, and that the description from reliable sources is correct. Your rant above is a violation of our talk ) 00:04, 7 December 2014 (UTC)

The fact that the word "Lyme" first and only appears in one of the citations at the bottom of the page is laughable. Is Wikipedia a place for information or propaganda? — Preceding unsigned comment added by 70.168.207.237 (talk) 19:28, 27 August 2014 (UTC)

Do you have a suggestion? Remember, this is not a forum. Dbrodbeck (talk) 23:09, 3 September 2014 (UTC)

His suggestion is obviously that you add something about the possible connection to lyme disease. http://lymedisease.org/news/lyme_disease_views/morgellons-infectious.html http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3257881/ — Preceding unsigned comment added by 24.207.136.200 (talk) 20:06, 15 December 2014 (UTC)

We would need a

WP:MEDRS source. Dbrodbeck (talk

) 21:10, 15 December 2014 (UTC)

We would indeed. And since the Lyme to whihc he refers is very probably "chronic Lyme", another non-existent disease, we would neeed to have a very *good* RS for it. Guy (Help!) 23:59, 15 December 2014 (UTC)

This edit request to Morgellons has been answered. Set the |answered= or |ans= parameter to no to reactivate your request.

Please delete all uses of the term "delusional" from the article, as evidence has been found to prove that there is an underlying bacterial agent present in Morgellons disease. The primary source is believed by many research scientists to be Agrobacterium and is associated with the non-delusional spirochetal disease known as Lyme disease. Morgellons is NOT a disease based on delusional beliefs of a bug infestation, it is a poorly understood illness which is just now beginning to become understood. This wiki article does not help the media nor does it help sufferers of the disease by stating that it is simply a delusion or psychosis.

^[1]

BHouse (talk) 18:21, 10 December 2014 (UTC)

Please read Wikipedia:Identifying reliable sources (medicine), and note that we don't base article content on single primary-source studies, and then look through the archives for this page for past discussions of Savely and Stricker. AndyTheGrump (talk) 18:38, 10 December 2014 (UTC)

This is a PubMed article which includes multiple photos - please take a look when you get the chance. If needed I will gladly provide further research studies as well.

Mayne P, English JS, Kilbane EJ et al. Morgellons: a novel dermatological perspective as the multisystem infective disease borreliosis ^[2]

BHouse (talk) 18:17, 17 December 2014 (UTC)

Please read through the archives and please review

WP:MEDRS. Dbrodbeck (talk

) 18:35, 17 December 2014 (UTC)

F1000 is a pay-to-play hosting service with post-publication review, it is not a credible source. Guy (Help!) 19:38, 17 December 2014 (UTC)

Here is another article associating Morgellons syndrome with a spirochetal infection as well as bovine digital dermatitis:

Middelveen, M. J., & Stricker, R. B. (2011). Filament formation associated with spirochetal infection: a comparative approach to Morgellons disease. Clinical, Cosmetic and Investigational Dermatology, 4, 167–177. doi:10.2147/CCID.S26183 ^[3]

BHouse (talk) 19:35, 19 December 2014 (UTC)

A simple question. Have you read WP:MEDRS? AndyTheGrump (talk) 19:51, 19 December 2014 (UTC)

And/or the archives? Dbrodbeck (talk) 19:58, 19 December 2014 (UTC)

..A simple answer: yes. And I have cited PubMed articles found in scientific journals as stated in WP:MEDRS, so what is the reason for your questioning of my sources? Is anyone actually reading the articles I've provided? If the responses to my evidentiary support are going to continue to be skeptical and negative, then I'll refrain from attempting to correct this Wikipedia article any further.

BHouse (talk) 20:05, 19 December 2014 (UTC)

"Individual primary sources should not be cited or juxtaposed so as to "debunk", contradict, or counter the conclusions of reliable secondary sources". You are suggesting we use a primary source to 'debunk' the assertion made in reviews such as this [3] that Morgellons is an example of delusional infestation. AndyTheGrump (talk) 20:23, 19 December 2014 (UTC)

Plus, I believe those actual publications have previously been discussed. Dbrodbeck (talk) 20:51, 19 December 2014 (UTC)

WP:NOTFORUM
The following discussion has been closed. Please do not modify it.
This edit request to Morgellons has been answered. Set the |answered= or |ans= parameter to no to reactivate your request. Morgellons is a recognized Disease now! and not a delusional disease as there is now, too much evidence to say other wise, and a lot of doctors now recognize it as being a genuine Disease caused by a number of factors, including Fungi, Arthropods and insects and Borellia Bacteria, a spirochete. I have physical photographic evidence of the mentioned parasites embedded in the epidermis of the skin. You can not let this statement of Morgellons being a psychosomatic problem continue and discredits it's suffers shamefully, and humiliates, it is real...... I can supply more evidence if needed. Regardless of what the American CCD says. The fibers present are not textile in origin, I worked professionally as A "Dye Technician & Colourist" being a member of the Australian & New Zealand Dyers & Colourist Association for over 20 years and know textiles extremely well. The fibers are of Fungal origin........a Grey white fibre(translucent & segmented), A blue/green fibre(either segmented & or monofilament), a prominent Red fibre (Segmented & or monofilament) and is the key to this disease entering the body and stopping the immune system from attack, a Black fibre (segmented & or monofilament), all three fibres are found in ALL MORGELLON SUFFERERS ALL OVER THE WORLD, AND ARE EXACTLY THE SAME, THIS IS CONCLUSIVE AND CAN NOT BE ARGUED with............................. The fibres are the key to this disease, possible attracting other parasites via pheromones it releases as a lot of Fungi do, including the known pathogenic type which to the same thing as turning off our immune response to it. I can give more sources but be aware of there a lot of uneducated theories which makes it hard to get to the truth of it all. http://www.morgellons-research.org/ Rodroger (talk) 17:15, 12 January 2015 (UTC) References ^ http://www.morgellons-uk.net/pdf/morgellons07.pdf ^ http://f1000research.com/articles/2-118/v1 ^ http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3257881/

"but" in first para should be "while" or "when". 109.157.79.50 (talk) 01:11, 30 January 2015 (UTC)

Good point. Fixed. AndyTheGrump (talk) 01:13, 30 January 2015 (UTC)

First sentence contains a redundancy. Saying something is "delusional" or that something is "a delusional belief" is exactly the same as saying, in regard to the somethings that are believed to be present, that "in reality no such things are present." Therefore a single sentence where both modifiers are used for the same noun, the noun belief, is a sentence containing redundancy. I would suggest changing the sentence either to "morgellons is a condition whose sufferers have the delusional belief that they are infested with disease-causing agents described as things like insects, parasites, hairs or fibers," or to "morgellons is a condition whose sufferers have the belief that they are infested with disease-causing agents described as things like insects, parasites, hairs or fibers, while in reality no such things are present. Even with this change, the sentence is still awkward, and gives the article a non-professional tone, suggests that the authors are uneducated. Assuming that people who claim to have morgellons do not actually have the parasites they claim to have, then the opening sentences might be changed "Morgellons is a fictional illness whose fictional symptoms include skin sores and infestion of the skin by fibers. People who are apparently suffering from the delusion that they have such symptoms, and who say they have Morgellons, are actually suffering from delusional parasitosis, not from Morgellons, which is non-existant. Morgellons is neither a physical disease identified by parasitologists, nor is it a psychiatric disorder listed in the Diagnostic and Statistical Manual of Psychiatric Disorders. So the belief by some doctors that people who claim to suffer from morgellons, are suffering from a delusional psychiatric disorder called morgellons, is itself a delusion. The real disorder suffered by people who claim to have the fictional disorder they call morgellons, is delusional parasitosis. This is listed the DSM.

Nomenclator (talk) 18:59, 10 February 2015 (UTC)

The info. here is totally misleading to the public. All research should be considered before submitting a claim that truly sick and suffering people are delusional. This false claim is criminally abusive to all those who suffer from this physical disease. Already desperate for human support and understanding, you've made that struggle much more difficult. Please refer to the research being conducted and supported by The Charles E Holman Foundation. Go to their website and see the latest research published in peer reviewed outlets. There is an infectious component to this disease. It is real. The victims need your support, not your ignorant distortion of the facts. Please, please, please educated yourselves respectively. The information presented here is wrong. Glenda95 (talk) 01:25, 3 April 2015 (UTC)

Please please please bring a

WP:MEDRS compliant source. Dbrodbeck (talk

) 01:26, 3 April 2015 (UTC)

Mental illnesses are real physical diseases. Encouraging people to think otherwise is what really shows a lack of human support and understanding, by further stigmatizing people who are already suffering. TenOfAllTrades(talk) 02:05, 3 April 2015 (UTC)

Curiosity piqued by the Joni Mitchell story, I came here expecting nutjobbery or, at best, false balance, only to find that WP has for once had the courage to accurately reflect the scientific consensus. Kudos to all the editors involved. 31.55.6.67 (talk) 11:51, 3 April 2015 (UTC)

This page on Morgellons is extremely biased, in my opinion, for the following reasons. I am not an experienced Wiki editor so someone who is will need to make the editing changes noted below.

1) This page should include reference to and comment on the following published and peer reviewed studies and books by qualified medical authors and scientists instead of all the references to magazines (Popular Mechanics) and newspaper stories (other valid but omitted studies are noted below):

Direct Link: Article Stable URL: http://www.jstor.org/stable/25010485 Collembola (Springtails) (Arthropoda: Hexapoda: Entognatha) Found in Scrapings from Individuals Diagnosed with Delusory Parasitosis Deborah Z. Altschuler, Michael Crutcher, Beth A. Cervantes, Cristina Terinte and Louis N. Sorkin Journal of the New York Entomological Society Vol. 112, No. 1 (Spring, 2004), pp. 87-95 Published by: New York Entomological Society

J. New York Entomol. Soc. 112(1):87–95, 2004 COLLEMBOLA (SPRINGTAILS) (ARTHROPODA: HEXAPODA: ENTOGNATHA) FOUND IN SCRAPINGS FROM INDIVIDUALS DIAGNOSED WITH DELUSORY PARASITOSIS DEBORAH Z. ALTSCHULER,1 MICHAEL CRUTCHER, MD, MPH, FACPM,2 NECULAI DULCEANU, DVM, PHD (DECEASED),3 BETH A. CERVANTES,1 CRISTINA TERINTE, MD, PHD4 AND LOUIS N. SORKIN, BCE5 1National Pediculosis Association, 50 Kearney Road, Needham, Massachusetts 02494; 2Commissioner of Health, Oklahoma State Department of Health, 1000 NE 10th Street, Oklahoma City, Oklahoma 73117; 3Department of Parasitology, University of Veterinary Medicine, Iasi, Romania; 4Department of Pathology, University of Medicine and Pharmacy, Iasi, Romania; and 5Division of Invertebrate Zoology, American Museum of Natural History, Central Park West at 79th Street, New York, New York 10024-5192

Abstract.—Twenty individuals diagnosed with delusory parasitosis participated in a single site clinical study under the auspices of the National Pediculosis Association (NPA) and the Oklahoma State Department of Health. The objective of this study was to determine if there were any common factors in skin scrapings collected from this population. These individuals, whose symptoms were originally attributed to lice or scabies, were part of a larger group reporting symptoms of stinging/biting and/or crawling to the NPA. Multiple skin scrapings from each person were microscopically examined. Any and all fields of view that appeared incongruous to normal human skin were digitally photographed. When the photographic images were initially evaluated, no common factor was identified. However, more extensive scrutiny using imaging software revealed evidence of Collembola in 18 of the 20 participants.

My comment: This study is far more objective than the CDC/Kaiser Study in that none of the authors had a stakeholder interest or previously stated opinion, most of the authors had advanced training specific to parasites, between 15-30 skin scrapings were taken for each subject, it contained controls, it described all processes to avoid contamination of the samples, two samples of Collembolla were found in each participant before a positive finding was considered, and all results were photographed and reviewed by an entomologist. There was no drug testing because all other causes of DP would have to be ruled out prior to considering DP as a diagnosis. Kaiser had already diagnosed thousands of its members with DP prior to the CDC Morgellons study, and would have been open to medical malpractice law suits had anything other than their previous diagnosis been confirmed. The CDC is widely quoted as saying Morgellons is an Internet meme, however the clinical phase of this study study was conducted in 2000, which was before Mary Leito had created the name Morgellons and the Morgellons Research Foundation was on the Internet in 2002. Thus both Kaiser and the CDC were acting as judge in a study where they were also the defendants of a DP diagnosis, where in this 2004 DP study none the authors had any reputation or credibility to uphold.

The official position of the CDC is not that Morgellons is an Internet meme but that it is an Unexplained Dermopathy- even after the Kaiser Study.

2) Further, the CDC released the following comment between the time the Kaiser study was completed and the completion of the peer review process: http://www.cdc.gov/unexplaineddermopathy/docs/external_peer_review.pd

Question #5 asks: 5. What findings can be communicated to the public, medical community, and stakeholder community?

Who is the stakeholder community referred to in #5? How could there be a stakeholder if Morgellons is considered to be delusional? Why are there some findings that can't be communicated to the public and medical community? How can the Kaiser CDC study on Morgellons be considered science when an unnamed stakeholder had editorial control over what study findings could be communicated?

3) The Kaiser CDC study on Morgellons included marijuana as a recreational drug, when in fact, California recognizes medical marijuana use for many of the medical conditions the subjects reported, and many of the subjects were probably using it under a doctor's direction. It also used hair analysis for the drug testing instead of urine analysis, when this is not an accepted drug testing method for employment and other uses. Because hair grows slowly and is easily contaminated from things put on the hair or things in the air, urine drug analysis is far more reliable. It also reports a high rate of opiates in the hair analysis, while also reporting that a significant number of the participants were taking prescription pain killers, which can contain opiates, but failed to adjust the recreational drug use percentages to exclude contamination by prescription pain killers for valid medical conditions. It talks about the high rate of prescription drug use in the study participants, but since there are no controls, we never learn that by the CDC's own estimate, http://www.cdc.gov/nchs/data/hus/hus13.pdf#fig20 in 2013, that 50% (more in the over 65 age group) of Americans take prescription drugs on a daily basis (the highest rate of prescription drug use in the world). The entire focus of the Kaiser study is emphasizing drug use and creating a case for somatic disorders. The criteria of diagnosis for somatic disorders is entirely subjective and includes things such as opposition to authority figures (like questioning doctors)- see Wikipedia Somatic Disorders. We get drug tests, IQ tests, personality tests, and psychological evaluations but no real identification on what was found in the skin. For DP to even be considered everything else needs to be ruled out first. Terms used in the study such as "probably" and "most likely" cotton and the 40+ proteins that were not named do not rule out all other possibilities. The spectra of cotton and the fiber sample were not an exact match at all, which was acknowledged in the study conclusion that further study was needed on this unexplained dermopathy. This wasn't reported on the Wikipedia page or the mainstream press when the study was released.

4) The Kaiser CDC Morgellons study notes that no clustering was apparent, however the map on the page of the Morgellons Research Foundation, http://www.morgellons.org/maps.htm, clearly shows that CA was very hard-hit and that the majority of California cases were located in the greater San Francisco Bay and Los Angeles Metropolitan areas. The CDC itself stated that Kaiser of Northern California was selected because of the high percentage of cases reported in that area. The Kaiser map may not be indicative of a neighborhood hand-to-hand infectious cluster by place of residence, but could be indicative of an aerial spraying operation, such as the CA Dept. of Forestry & Agriculture Light Brown Gypsy Moth operation, which sprayed 5 counties around the SF Bay area in CA with an unapproved pesticide, Check Mate, that contained a micro-encapsulated insect pheromone during the time frame of the Kaiser study (http://www.cal-ehi.org/Cal-ehi.org/LBAM_files/CareyHarderLBAMTWGArticleAE2013.pdf) The EPA had no restrictions on the use of nanotech in pesticides until 2012 (http://www.epa.gov/pesticides/regulating/nanotechnology.html), and even then it only required notice and testing when novel nano structures (nanotubes, quantum dots, fullerenes) were to be included in the pesticide. It basically grandfathered in all nano scale ingredients currently approved in pesticides at the bulk scale. So everything in Roundup can now be nanoscale, despite the fact the basis for nanotoxicology as a separate area of study is that things at the nano scale have different properties, and that even if the exact same molecule is used at the nano scale it will have a different toxicological profile due solely to the increased surface area created by the smaller size. Recent independent research in Oregon by a toxicologist who is pulling pesticides off the store shelves and testing them for nano ingredients, because the manufactures are very secretive about nano ingredients, is finding that 90% of them she has tested contain nanomaterials. (http://modernfarmer.com/2015/01/everything-need-know-nanopesticides/).

4) The Mayo Clinic study cited on this page did, in fact, find insects and included the following statement: "Of these 80 specimens, 10 (13%) contained insects. All but one of the insects were noninfesting varieties; 1 (1%) was a pubic louse." Thus they dismissed their own findings because they were "non-infesting," (or not previously known to infest people and not supposed to be there) and never named the species that were found. The Mayo study also stated: "20 of the 80 samples (25%) were submitted for pathologic evaluation." So only 20 samples from the 108 participants were sent for evaluation by a pathologist, yet it concludes that all 108 people have DP. The statement in this article that the Mayo study did not find insects needs to be corrected.

5) Another study written by medical professionals omitted by the author of this page: http://www.jmedicalcasereports.com/content/3/1/8243. Surely this has more credibility than a Popular Mechanics magazine story?

Case report Morgellons disease, illuminating an undefined illness: a case series

William T Harvey1*, Robert C Bransfield2, Dana E Mercer3, Andrew J Wright4, Rebecca M Ricchi5 and Mary M Leitao6

   * Corresponding author: William T Harvey [email protected]

Author Affiliations

1 Preventive Medicine, Colorado Springs, CO 80949, USA

2 Psychiatry, Red Bank, NJ, 07701, USA

3 Veterinary Medicine, Fulton, TX, 78358, USA

4 General Practitioner, Bolton BL1 4QR, UK

5 Adult Medicine, USAFA, CO, 80840, USA

6 BS (Biology), Guilderland, NY 12084, USA

For all author emails, please log on.

Journal of Medical Case Reports 2009, 3:8243 doi:10.4076/1752-1947-3-8243

The electronic version of this article is the complete one and can be found online at: http://www.jmedicalcasereports.com/content/3/1/8243

Received: 28 November 2008 Accepted: 17 March 2009 Published: 1 July 2009

© 2009 licensee BioMed Central Ltd.

This is an Open Access article distributed under the terms of the Creative Commons Attribution License(http://creativecommons.org/licenses/by/3.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

concludes that:

Conclusion Proposed Characterization of Morgellons Disease

The authors conclude that Morgellons disease is a multi-systemic illness that has been presumed as a delusional phenomenon for decades as its most obvious and disconcerting manifestations resembled actual (but "unverified") parasite infestation as well as various psychopathologies. However, using recent technology and even a modicum of consistently obtained physical data supports that Morgellons manifest as a skin phenomenon, an immune deficiency state and a chronic inflammatory process. Since infectious agents can initiate and maintain chronic diseases, the behavioral and other CNS manifestations here are more likely effect than cause [18]. We suggest that the Morgellons label be considered to displace any label suggesting delusion as the primary cause of this phenomenon.

6) Another doctor (Integrative Medicine) and researcher on Morgellons, who was omitted on this page was Dr. Hildgarde Staninger (http://1cellonelight.com/), an industrial toxicologist specializing in nanotoxicology. She has treated hundreds of patients for this, which she calls Advanced Materials syndrome (basically nanotech). There are many research papers, videos and radio interviews on her websites and on the Internet regarding her work with what this page calls Morgellons.

The possibility of reactions to nanotech shouldn't be a surprise to dermatologists, who were among the first medical specialty to prescribe drugs containing nanotech in the 1990's with Retin A creams (they contain C20, a diminutive cousin of the C60 fullerenes (see Wiki Fullerenes & http://www.drugs.com/international/tretinoin.html) designed to reduce sun and other damage on the skin. The target market for these Retin A (tretinoin topical) creams was middle-aged Caucasian women, the same group that is disproportionately represented in the Kaiser Morgellons Study. Did anyone in the Kaiser study think to ask the middle-age white women in their study, all of whom we are told had sun damaged skin, if any of them had been prescribed Retin A?

A 2007 Consumer Reports study on sunscreens (http://www.virlab.virginia.edu/Nanoscience_class/lecture_notes/Nano_challenges_and_fears_Supporting_materials_files/Case%20Study%20-%20Nano%20sunscreen/No%20Nano%20Sunblocks%20-%20ConsumerReports.pdf), which dermatologists recommend to virtually everyone of any age, found nano scale ingredients in 4 out of 5 sunscreen products it tested that claimed not to use nanoparticles. Although dermatologists may not be aware of it, the same nano scale titanium dioxide and zinc oxide nano particles used in sunscreens are used in building trade applications as semi-conductors and photo-catalysts. The book Nanotechnology in Eco-efficent Buildings (edited by F. Pacheco, et al., Woodhead Publishing, Phil, PA, 2013) contains entire chapters on the use of nanoparticles of Titanium Dioxide and Zinc Oxide (both common in sunscreens) as semi-conductors and photo-catlaysts, and includes in Chapter 7 a very thoughtful and well documented evaluation of these substances with respect to human and environmental health.

So, doctors at Kaiser and around the country are recommending and prescribing nanotech items on a regular basis from the Dermatology Dept to the Oncology Dept. with very little training (other than the drug company reps) or knowledge in nanotech and their pathologists also may have no training in nanotech or could be using equipment unable to detect what the doctors are prescribing.

The propensity of carbon nanotubes to agglomerate into hard particles when in a wet environment (like our bodies) and to form fibers by aligning their electrical charge when in dry environments (like on the surface of our skin) is so well known and understood that the nanotoxicology research website is actually called www.particleandfibretoxicology.com. Nobody at Kaiser, the CDC or the NIH knows nanotubes create fibers? The best description I have read of this was in The Toxicology of Carbon Nanotubes edited by Ken Donaldson, et al, (Cambridge University Press, Cambridge, UK, 2012).

The microscopic hexagons widely reported and photographed by people with Morgellons (http://www.morgellonsexposed.com/plaques.htm, https://www.youtube.com/watch?v=qyMhUKOzO2I) are explained in the book Semi-conducting Nanocrystal Quantum Dots edited by Andrey L. Rogach (Springer Wien, NY, 2008) as one form of MEMS, or microelectrical mechanical systems. The book includes nice photos identical to those on the Morgellons webpages noted above including isometric drawings of their stacking.

Government Depts. such as Veteran’s Affairs, have repeatedly diagnosed people with somatic disorders including soldiers exposed to nuclear blast radiation, Vietnam vets exposed to Agent Orange, and Gulf War vets and attacked them and portrayed them publicly as whiners and malingers and denied them disability and treatment other than for mental disorders. But of course with decades of hindsight we now know otherwise, Lyme disease, chronic fatigue and multichemical sensitivities were also in the mental illness bucket. The official government policy is “plausible deniability” and all the above mentioned examples are this policy in action. Basically speaking truth to power involves first being ignored, then attacked (as crazy) and then finally accepted. Morgellons is a great example of this policy in action. Right now in Europe they are discussing how to treat people disabled with electromagnetic sensitivity. Sweeden now pays disability and provides special housing to these people. Guess what they are trying to say about that: it is an Internet meme and the people are mentally ill. Sound familiar? The US government has heavily invesedt in nanotech, and even K. Eric Drexler admits that the military will be the greatest user of nanotech research and applications. (Radical Abundance, Perseus Books, NY, NY. 2013). Nano was allowed in the USA food supply as a GRAS coloring agent in 2002 by the FDA, and is not even prohibited in organics. It is in our bright white toothpaste, food, pesticides, personal care products and supplements, prescription drugs, water filtration systems and clothing, and they are being very secretive about all this. I can document all this for you, but why bother?

I have read some of the edit requests on this page and it appears a few people are blocking pretty reasonable requests for revisions on really absurd technical grounds. I know you won’t actually change the page to include my editing, but I am leaving this info here for others to read. This is the worst and most biased Wikipedia article I have ever read.

2602:304:374F:DAC0:9C1D:1ECD:9641:22F0 (talk) 06:44, 9 March 2015 (UTC)

None of those references meet

WP:MEDRS. (It is possible I have missed one, that is quite the wall of text). Dbrodbeck (talk

) 11:42, 9 March 2015 (UTC)

People suffering from conditions caused by identifiable parasites or toxins are people suffering from conditions caused by identifiable parasites or toxins. People suffering from Morgellons have conditions for which there is no physical cause by definition. Like Joni Mitchell, they may even believe they are exuding material that "cannot be forensically identified as animal, vegetable or mineral." (Comment repeated below.) 109.144.222.250 (talk) 12:51, 3 April 2015 (UTC)

Please correct the article on morgellons to include the following very important points and reference!

Astonishingly, many practicians actually read no other reference besides Wikipedia. Patients are being left without treatment because of such texts.

Everyone who is a patient or a health professional or a family member ought to read the following piece of research: http://www.morgellonsuk.org.uk/micromyiasis.htm Cite error: There are <ref> tags on this page without content in them (see the help page). It explains how small flies' larvae live in the skin. This is a great relief after all those supernatural explanations. Tourists catch it from sand flies on African beaches. It ought to be thought of as a returning travellers' illness with routine check ups and ivermectin injections.

It is useful to know that some balls of filaments are likely fly frass. Also that other longer filaments are most likely from clothes, transported into the skin by larvae when they enter the skin^[1].

It is useful to know that freezing will not help, but that hot temperatures do help, for clothing and other materials. Regular hot sauna bathing will help as well, but infrared sauna will not.

Psychological effects of the illness are most likely due to being afraid of being contagious. Once the nature of the illness is elicited, the fear of contagion should subside a little.188.238.143.199 (talk) 23:00, 20 March 2015 (UTC)

See Wikipedia:Identifying reliable sources (medicine). We do not base article content on partisan websites. AndyTheGrump (talk) 23:41, 20 March 2015 (UTC)

People suffering from conditions caused by identifiable parasites or toxins are people suffering from conditions caused by identifiable parasites or toxins. People suffering from Morgellons have conditions for which there is no physical cause by definition. Like Joni Mitchell, they may even believe they are exuding material that "cannot be forensically identified as animal, vegetable or mineral." (Comment repeated from above.) 109.144.222.250 (talk) 12:53, 3 April 2015 (UTC)

And they say it's real: http://www.mayoclinic.org/morgellons-disease/art-20044996 98.118.62.140 (talk) 00:43, 3 April 2015 (UTC)

This talk page is a wreck, but the best I can determine this entire section was added in early April by Robertinventor and then re-edited multiple times, to the poing that adding an unsigned template isn't doable at this point. SandyGeorgia (Talk) 06:24, 20 May 2015 (UTC)

Sandy, what happened is that this section for some reason wasn't archived. I did sign it originally but the part with my signature has been archived and this part wasn't. Perhaps we should archive it manually. I've noticed in the past that sometimes the archiving bot will just get stuck with unsigned subsections if you break up a post with headers, and that's what happened here I think. And the archives are likely to be difficult to read also because the archiving bot tends to change the order of the page. Robert Walker (talk)

I came to this article to find out more about Morgellon's disease after the reports about Joni Mitchell. Anyway - I was surprised to see it say definitively that this is delusional, when the news stories were says things such as

"Morgellons is a controversial condition and is not recognised by mainstream medical authorities. Sufferers say it is characterised by crawling and stinging sensations under the skin but many in the medical community believe it is a psychiatric disorder." from BBC news report: Joni Mitchell in 'intensive care' in Los Angeles hospital

It's one thing to say, as the BBC did in their report, that "Many in the medical community believe it is a psychiatric disorder." It's another thing altogether to say as the lede of this article says, that "Morgellons (also called Morgellons disease or Morgellons syndrome) is a condition whose sufferers have the delusional belief that they are infested with disease-causing agents described as things like insects, parasites, hairs or fibers, while in reality no such things are present.". That is to present this view as a "fact", as a "view from nowhere".

"The NPOV policy says nothing about objectivity. In particular, the policy does not say that there is such a thing as objectivity in a philosophical sense—a "view from nowhere" (to use Thomas Nagel's phrase), such that articles written from that viewpoint are consequently objectively true. That is not the policy, and it is not our aim! Rather, to be neutral is to describe debates rather than engage in them. In other words, when discussing a subject, we should report what people have said about it rather than what is so."

See Wikipedia:Neutral_point_of_view/FAQ

Anyway so I did a google scholar search, to find out more, and there are several articles saying that it is possibly non delusional, in several different peer reviewed clinical journals.

I was also interested to see that the most recent in the google scholar search results, published in March 2015 12 February 2015, comes to the definite conclusion that "Our study using multiple detection methods confirms that MD is a true somatic illness associated with Borrelia spirochetes that cause Lyme disease. Further studies are needed to determine the optimal treatment for this spirochete-associated dermopathy."

Robert Walker (talk) 11:56, 2 April 2015 (UTC)

Details

Here is the first article I found from 2010: Morgellons disease: Analysis of a population with clinically confirmed microscopic subcutaneous fibers of unknown etiology, Virginia R Savely and Raphael B Stricker, Clin Cosmet Investig Dermatol. 2010; 3: 67–78.

Amongst other points, it mentions a high level of association with Lyme disease - 97% of those reporting it had Lyme disease. It reports a far higher level of smoking than the general population (smoking reduces immune response). It confirms presence of the fibres below the skin, including in places that can't be reached by patients such as the middle of their backs. It says that they were hard subcutaneous micro-fibres, so difficult to analyse.

And it makes this point:

"The prevalence of delusional disorder in the US is estimated to be about 0.03%, and a similarly low prevalence is found in other societies. A review of the backgrounds of 3,000 self-reported cases of Morgellons disease found pre-existing delusional disorders to be no more prevalent than would be expected in the general population. Nevertheless, patients with symptoms of Morgellons disease are routinely dismissed as delusional. The present study reinforces the fact that Morgellons patients appear to be distinct from patients with delusional disorders in terms of demographics and symptomatology."

Other articles on the same topic (2006):

"Morgellons disease is a mysterious skin disorder that was first described more than 300 years ago. The disease is characterized by fiber-like strands extruding from the skin in conjunction with various dermatologic and neuropsychiatric symptoms. In this respect, Morgellons disease resembles and may be confused with delusional parasitosis. The association with Lyme disease and the apparent response to antibacterial therapy suggest that Morgellons disease may be linked to an undefined infectious process. Further clinical and molecular research is needed to unlock the mystery of Morgellons disease." The Mystery of Morgellons Disease, Virginia R. Savely, Mary M. Leitao, Dr Raphael B. Stricker, American Journal of Clinical Dermatology February 2006, Volume 7, Issue 1, pp 1-5

Also (2009):

This one is based on a case study combine with a review of 251 previous citations:

"These data suggest Morgellons disease can be characterized as a physical human illness with an often-related delusional component in adults. All medical histories support that behavioral aberrancies onset only after physical symptoms. The identified abnormalities include both immune deficiency and chronic inflammatory markers that correlate strongly with immune cytokine excess. The review of 251 current NLM DP references leads us to the possibility that Morgellons disease and DP are grossly truncated labels of the same illness but with the reversal of the cause-effect order. Further, the patients’ data suggest that both illnesses have an infectious origin."

"Proposed Characterization of Morgellons Disease The authors conclude that Morgellons disease is a multisystemic illness that has been presumed as a delusional phenomenon for decades as its most obvious and disconcerting manifestations resembled actual (but “unverified”) parasite infestation as well as various psychopathologies. However, using recent technology and even a modicum of consistently obtained physical data supports that Morgellons manifest as a skin phenomenon, an immune deficiency state and a chronic inflammatory process. Since infectious agents can initiate and maintain chronic diseases, the behavioral and other CNS manifestations here are more likely effect than cause. We suggest that the Morgellons label be considered to displace any label suggesting delusion as the primary cause of this phenomenon." Morgellons disease, illuminating an undefined illness: a case series William T Harvey, Robert C Bransfield, Dana E Mercer, Andrew J Wright, Rebecca M Ricchi, Mary M Leitao Journal of Medical Case Reports July 2009

Also (2013) - this is in F1000 research - so article submitted before review, with open process of peer review, has several "approve" reviews at the end by experts.

"Like BDD [a similar disease of cattle], MD filaments are produced by epithelial cells and stem from the stratum basale and from the root sheath of hair follicles, thus providing evidence that the filaments are cellular in origin 3, 4. Furthermore, immunohistochemical and histological staining has demonstrated that these filaments have a collagen as well as a keratin component. Like cattle with BDD, patients with MD also produce antibodies reactive to Borrelia burgdorferi antigens 18. Multisystemic symptoms resembling Lyme disease also imply a possible spirochetal etiology for MD 1– 3, 18, 19. The frequent clinical diagnosis of Lyme disease and coinfecting tick-borne pathogens in MD patients suggests a multifactorial etiology and possible vectoring by ticks" Association of spirochetal infection with Morgellons disease Marianne J Middelveen, Divya Burugu, Akhila Poruri, Jennie Burke, Peter J Mayne, Eva Sapi, Douglas G Kahn, and Raphael B Strickera, F1000Res, 2013 Jan 28. doi: 10.12688/f1000research.2-25.v1

Also (2015):

"Our study using multiple detection methods confirms that MD is a true somatic illness associated with Borrelia spirochetes that cause Lyme disease. Further studies are needed to determine the optimal treatment for this spirochete-associated dermopathy.".

..."We undertook a detailed microscopic and molecular study of North American MD patients to investigate the presence of borrelial spirochetes systemically and in dermatological specimens. Based on culture, histology, immunohistochemistry, electron microscopy and molecular testing, we present extensive evidence for spirochetal infection in MD patients. Our study confirms that MD is a true somatic illness associated with Lyme disease. The proposed clinical classification scheme for MD should aid in the diagnosis and treatment of this complex illness." Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients Marianne J Middelveen, Cheryl Bandoski, Jennie Burke, Eva Sapi, Katherine R Filush, Yean Wang, Agustin Franco, Peter J Mayne1 and Raphael B Stricker, BMC Dermatology 2015, 15:1 doi:10.1186/s12895-015-0023-0

That last is a recent article, published 12 February 2015, and comes to the definite conclusion that "Our study confirms that MD is a true somatic illness associated with Lyme disease.".

Robert Walker (talk) 11:56, 2 April 2015 (UTC)

Special responsibilities for

WP:NPOV

in articles on medical topics in Wikipedia

As someone else said, nowadays often even doctors go to Wikipedia, and may not always be aware of the issues of

, especially so in medical articles. So anyway - this is to suggest editors with a medical background might like to review this cite, and possibly update the article as needed.

About BMC Dermatology for the most recent 2015 cite:

BMC Dermatology is an open access, peer-reviewed journal that considers articles on all aspects of the prevention, diagnosis and management of skin disorders, as well as related molecular genetics, pathophysiology, and epidemiology.

It surely satisfies all the qualifications for reliable citations in wikipedia?

Robert Walker (talk) 11:56, 2 April 2015 (UTC)

See

WP:MEDRS for Wikipedia's standards for reliable medical sourcing, and then evaluate the sourcing based on those criteria. Zad68

12:17, 2 April 2015 (UTC)

I have a general science background and am not a medical expert. So don't plan to edit the article myself. I'm just posting this for the attention of medical experts who would be able to evaluate the sources properly and also would be able to summarize them accurately in the article. I think the cites I found are probably enough to show that there is at least a diversity of views on the matter in the medical community, but as I'm no expert, am just suggesting that those with a medical background might care to review the cites and edit the article if necessary. Thanks! Robert Walker (talk) 13:18, 2 April 2015 (UTC)

Have read the replies to other posts on this talk page now. I can understand that the 2015 paper is recent on-going research and can understand the point that papers need to be presented in an overall review paper rather than in possibly controversial individual studies. That makes sense especially for medicine, as the subject is noted for the prevalence of articles based on limited case studies that suggest that something is a cure for a disease, followed by other articles with more patients that disprove those first ones.

So there is bound to be a lag between the first new leading edge results in medical journals, and those results gaining acceptance to the level where they can be reported in Wikipedia.

However, at the very least, the lede should surely say something like the BBC news story, that "many in the medical community (but not all) think that it is a condition whose sufferers have the delusional belief..." rather than just say "it is a condition whose sufferers have the delusional belief...".

And - I'd have thought it was also okay to use these cites as sources to show that there are members of the medical community who do not consider it to be a delusional belief? After all the authors of these papers clearly don't think it is a delusional belief.

I can see that what is needed are text books, or review articles or other good secondary sources citing these primary sources. I'll see if I can come up with anything more. Robert Walker (talk) 14:02, 2 April 2015 (UTC)

Did a short search, to try to find a recent survey article of Morgellon's disease in a recognized non fringe and peer reviewed medical journal, or a recently published text book on the subject. But have't found anything. Just lots of individual papers - have added another couple to the list section above. Interestingly, none of the recent articles I found on it in Google scholar proposed that it is delusional in origin though some said that it can have delusional beliefs associated that manifest later on after onset of the first physical symptoms.

Nearest to an overview was this one, but it is in a book about mental health - still it may be of some interest as it is quite detailed and takes a hstorical approach to the subject: Beyond Mental Illness: Transform the Labels Transform a Life By David Moyer, LCSW. Anyway that's probably the best I can do for now. Suggest that it needs attention though and that the lede at least should be changed to say something like "many in the medical community (but not all) think that it is a condition whose sufferers have the delusional belief..." for now. Robert Walker (talk) 14:38, 2 April 2015 (UTC)

talk

) 14:57, 2 April 2015 (UTC)

Okay I can understand all that, it makes sense.

As far as I can see your only objection to citing Virginia R Savely and Raphael B Stricker is that they have been the leading researchers in the field - not any evidence of wrong doing or assessment of fringe by other researchers. But I can understand that wikipedia has to wait until it is confirmed and then reviewed.

As for the lede, how about using something like the approach of this quote instead (better model than a news article of course)?

"Proponents of Morgellons disease define it as illness in which thread-like fibers under the skin cause crawling sensations, skin changes, fatigue, pain, and “brain fog.” The term is not widely accepted by the medical community; it is mostly believed that it is a form of delusional infestation or somatic symptom disorder. " - from The Morgellon's Debate, in Practical Psychodermatology (book). (Of course not those exact words unless in quotes would be

WP:COPYVIO

but a similar statement).

The main issue I have with the lead is that it says quite definitively that it is psychosomatic, as a "view from nowhere", without attributing that statement to anyone. The cites I found wouldn't seem to support such a definitive statement as that, and it seems that at least some medical researchers would choose to disagree with that view. So, seems not quite to accord with the guidelines on

WP:NPOV

in the FAQ.

While saying soemthing like " it is mostly believed that it is a form of delusional infestation or somatic symptom disorder." as that chapter intro says would seem to be supported by the cites - bearing in mind this understandable guideline about not including leading edge medical research. Robert Walker (talk) 17:16, 2 April 2015 (UTC)

We can save some time by noting that that book chapter was discussed previously on this talk page; see Talk:Morgellons/Archive 11#Medical Textbook with Chapter on Morgellons. TenOfAllTrades(talk) 17:41, 2 April 2015 (UTC)

Indeed. That plus

WP:MEDRS together say that nothing needs to change. It's never been hard to find individual books providing (generally false) balance between scientific consensus and pseudoscientific drivel, as anyone familiar with the popular literature on quackery will know. Guy (Help!

) 18:48, 2 April 2015 (UTC)

I found a lot of pseudo science yes. But the ones I cited were ones that were published in clinical journals. I didn't realize that this had been discussed so extensively, I've read some of the archives, now, seems it comes up often. It doesn't seem to me, as someone new to all this, that there is a consensus in favour of presenting the lede in its present form. Nor did I find the arguments in favour of keeping it in its present form compelling, didn't seem to be a knock down case for this in the debates - and there were several alternative ledes presented some of which seemed better to me. Have you tried an RfC on it?

As for your remarks about the cites I gave - that they are primary sources - seems to me that many of the cites used by the article in favour of the delusional beliefs hypothesis, e.g. in the lede, would fail the same criteria. For instance, http://link.springer.com/article/10.1007%2Fs11920-011-0188-0 just to take an example, but most of the first few cites in the article are of that nature. I'm not saying that the existing cites are invalid. Just that some at least seem to be equally leading edge primary research to the ones you've left out.

That is unless you have some stronger reason for believing the ones by Virginia R Savely and Raphael B Stricker are fringe than just that they publish frequently on this topic and have many papers on it. Because that is often the mark of a good scientist leading his or her field, as much as a bad one with a fringe hypothesis. In an area I know something about for instance, there are many articles by Nilton Renno on water on Mars - that's because he is a leading expert on this topic and often writes and co-authors. Similarly Chris McKay co-authors an astonishingly large number of articles on astrobiology - he is recognized as an expert in that topic area also. And their 2006 article is cited by 74 later articles which seems a respectable level of citations to me. [4]. I don't see any of the obvious signs of fringe science here at least. Robert Walker (talk) 19:27, 2 April 2015 (UTC)

Of course there are others that are clearly fringe, I came across those also, but the ones listed above, these don't seem to be at all. At least not obviously so on a first look. And published in several different sources, different medical journals. Just my 2cts :). On what is clearly a long running debate on this talk page which I didn't realize. Robert Walker (talk) 19:27, 2 April 2015 (UTC)

Well, Stricker actually has a finding of research misconduct against him [5]; he fudged data to get an NEJM paper that was retracted by his three co-authors when they found out what he did: [6]. As a consequence, was barred by the ORI from receiving or applying for federal grants for three years in the 1990s. So he's previously gotten into serious trouble for throwing out data that doesn't fit his preferred hypothesis.

In recent years, his publications seem to be almost exclusively low-impact papers, opinion bits, and letters related to Morgellons and the related dubious diagnosis of chronic Lyme disease. I suppose it's possible that he might be "leading his field", but if so it's taking an awfully long time for anyone to start following. It's looking much more like he's just wandering in the wilderness.

And the advent of the "open-peer-review" journals (where the journal publicly posts the identities and sometimes the comments of peer reviewers) opens a window on at least some mild shenanigans regarding reviewer selection in some of his recent papers. This 2013 F1000 paper has a publisher's note about an undisclosed conflict of interest, where one of the reviewers was co-authoring another manuscript with the paper's authors while reviewing the F1000 paper. And one of the reviewers of the current paper (BMC Dermatology, 2015) was Robert Bransfield [7], who is actually acknowledged in the paper (!) ([8]) for his contributions. This sort of thing has a couple of likely explanations—Stricker (et al.) are deliberately pointing journal editors at very friendly peer reviewers (and these mostly-crappy, low-impact journals don't do much due diligence), potential conflicts of interest be damned; or these papers are so far out on the fringe that it's very difficult for journal editors to find anyone who is willing to waste time on reviewing manuscripts on these topics, so they're relaxed about their reviewer standards; or both. TenOfAllTrades(talk) 00:27, 3 April 2015 (UTC)

Okay I see, thanks for explaining. Yes I agree, especially that it doesn't look good at all that he was found to have fudged data in the past. That would be a red flag for me also when choosing citations for an article. I understand better now why you are cautious about citing his research. And I can understand, so your point is - that you want to be able to include another

WP:POV if it is valid and supported - but haven't yet been able to find any papers that meets up to the standards needed for citation. It does seem to be a field that attracts a lot of low quality research alongside the good stuff and hard to be able to know which are the good cites to use. Robert Walker (talk

) 01:38, 3 April 2015 (UTC)

I can see the point, still I feel the lede is still overstating the case by saying that it "is a condition whose sufferers have the delusional belief" - you have to say "says who" - I don't think you could say it's been proved definitively. And there are many obviously who think that it is not originated in delusion. So, I think it has to be qualified, I'd say, by saying who it is who says they have a delusional belief. Because it is a matter of conflict, and debate, even if the controversy may be largely between mainstream medical researchers, and other researchers whose status may be less established, and the patients themselves, and various support organizations. I think that should be reflected somehow in the lede. Maybe then you'd get less of these objections on the talk page also.

After all the guidance on the lede is that it should be like a shorter version of the article itself. And later in the article it says "Most dermatologists, psychiatrists, and other medical professionals view Morgellons as a new name for a well established condition, delusional parasitosis" then "This explanation is, however, "unpopular among individuals identifying themselves as having Morgellons disease"" - that's much better than the lede because it attributes everything said to a source and shows that there is controversy here.

Also the article doesn't mention the Charles Holman Foundation. It seems quite a major organization. The thing is that wikipedia should present any significant, noteworthy POV. For instance, it presents the views of climate skeptics. It says clearly in those articles that the main stream scientific view is of climate change - but then presents the views of climate skeptics just as they understand it. So - I think it should present the views of the patients - and the researchers who agree with them, and the Holman foundation - in some form or another. Even if it is currently regarded as fringe (which I don't know if it is) - it should I think be presented in some form or other.

Even if it was views of medical researchers all on one side, and views of alternative medicine and fringe on the other side, if it is a significant widely held POV then it needs to be covered I think appropriately labelled, e.g. as fringe, or as alternative medicine if that is what it is, or as minority mainstream if that is what it is. Also - I see that the Holman foundation has an article about this very article, saying that they regard it as biased because it leaves out peer reviewed citations of views not covered in the article. See Anonymous Editing on Wikipedia Keeps Morgellons Sufferers in the Dark. It's an article from 2013. So details probably not up to date.

They hosted a conference in 2015, with many speakers on Morgellon's disease, eleven speakers on the page here: 8th Annual Medical Scientific Conference on Morgellons Disease. With a diversity of views but quite a few presenting the possiblity that infectious agents are involved in causing the disease.

Also, what you say about Saveley having in the past falsified data doesn't prevent the possibility that his more recent research he has turned a leaf and is doing good research now, and with seems quite a few other researchers following similar lines also it would seem.

Anyway - I think that the lede has to somehow present a diversity of views - that it is not just delusional as the only view. The main thing then being how to characterize the other views. Which again are surely not just patients also and not just internet self diagnosis as the article claims at present. But quite a large body of people who have this

) 02:13, 3 April 2015 (UTC)

Stricker, not Savely, is co-author of the disputed paper. Mistaken attribution above (both are among many 'LLMD' practitioners.) — Preceding unsigned comment added by 66.108.88.29 (talk) 10:32, 3 April 2015 (UTC)

Yes you are right: Exploring the association between Morgellons disease and Lyme disease: identification of Borrelia burgdorferi in Morgellons disease patients Marianne J Middelveen, Cheryl Bandoski, Jennie Burke, Eva Sapi, Katherine R Filush, Yean Wang, Agustin Franco, Peter J Mayne1 and Raphael B Stricker, BMC Dermatology 2015, 15:1 doi:10.1186/s12895-015-0023-0

Also the introduction to that article says

"Morgellons disease (MD) is a complex skin disorder characterized by ulcerating lesions that have protruding or embedded filaments. Many clinicians refer to this condition as delusional parasitosis or delusional infestation and consider the filaments to be introduced textile fibers. In contrast, recent studies indicate that MD is a true somatic illness associated with tickborne infection, that the filaments are keratin and collagen in composition and that they result from proliferation and activation of keratinocytes and fibroblasts in the skin. Previously, spirochetes have been detected in the dermatological specimens from four MD patients, thus providing evidence of an infectious process."

Which I'd have thought fulfills the requirements of being a review of previous research rather than leading edge new research, and so capable of being cited in this article. And Savely is not an author. And one of the co-authors is Marianne J. Middelveen, a Veterinary Microbiologist, which makes sense with the Bovine disease connection - the results of that article, that they found similar fibres, also analysed to be a mixture of keratin and cellulose, in a disease of cattle.

And this is her abstract for the conference, says much the same.

Abstract: Morgellons disease is a controversial topic in medicine. There are two polarized views regarding Morgellons disease: one, that it is a somatic illness and that it has an infectious etiology and two, that it is a psychiatric illness. Those that maintain it has an infectious etiology argue that the lesions are primary and result from an infection. Those that believe it is psychogenic in origin argue that there are no primary lesions and that lesions are secondary to psychiatric illness, the result of self-excoriation. The evidence supporting these two hypotheses will be examined.

If you look at the conference listing, seems a wide range of authors.

Two are from the Center for the Investigation of Morgellons Disease at Oklahoma University.

They say in the page for the center, on the Oklahama University website:

• "Morgellons is a multi-system disease of unknown etiology
• Morgellons disease is discounted as psychiatric illness or other skin condition by many public health officials and physicians
• Physical and neurological symptoms are often dismissed or ignored
• Sufferers are labeled with delusions of parasites or neurotic excoriations from obsessively picking at the skin
• OSU-CHS physicians/researchers have physical evidence of Morgellons Disease
• Morgellons is not psychiatric in origin
• Morgellons is an emergent disease
• Tangible fibers are found in Morgellons lesions"

Director Randy Wymore, Research associate Carol Saylor-Hefley

If you look at the list of presenters to the conference and click through to find out more about the presenters, some of them have impressive backgrounds.

It doesn't have the tell-tales of fringe for me at all. Seems more like a medical controversy, and not just a couple but many authors who have this alternative

WP:POV

. Many of them clearly notable. And not credible at all, seems to me, that they are all falsifying this data.

I feel that it has to be covered just on basis of notability, that they publish many papers, that they have a foundation, and several organizations and centers devoted to the research and so on. And it's not the place of wkipedia to say that they are wrong in their views.

Also another relevant thing, this is how the United States National Library of Medicine characterizes it as:

Morgellons Disease "An unexplained illness which is characterized by skin manifestations including non-healing lesions, itching, and the appearance of fibers. There appears to be a strong association with LYME DISEASE."

The Mayo Clinic summary says

• "Some health professionals believe that Morgellons disease is a specific condition that needs to be confirmed by research.
• Some health professionals believe that signs and symptoms of Morgellons disease are caused by another condition, often mental illness.
• Other health professionals don't acknowledge Morgellons disease or are reserving judgment until more is known about the condition."

Suggestion: new article on the Morgellons Disease Foundation

One other thought I had, I could do a stub article on the Morgellons Disease Foundation. It is easily notable enough to have a page on wikipedia, according to the guidelines, seems to me. Any organization that organizes an annual conference with many academic speakers, and which is linked to by universities and the likes of the Mayo clinic, seems to me, easily fulfills the Wikipedia guidelines for notability.

Then that might help defuse the situation here a bit perhaps. You could link to that page in the lede, and then because it is an article about an organization rather than a medical condition, may then be easier to present the material in a

.

There is a very short summary of the foundation here, in the press release for the 2014 conference

"The Charles E. Holman Morgellons Disease Foundation, based in Austin, TX, is a 501(c)3 nonprofit organization committed to advocacy and philanthropy in the battle against Morgellons Disease. The foundation was named for Charles E. Holman, a pioneer in the fight against Morgellons Disease, and is led by Director Cindy Casey-Holman, "

which could be a starting point for the new article, as well as including some of the other material here. I can try a draft over the weekend in user space first. Robert Walker (talk) 11:38, 3 April 2015 (UTC)

These issues have all been discussed at length. What you need to do is go away, persuade the scientific community of the validity of morgellons, and then come back, by which time we will already have picked it up. Wikipedia is not the place to fix the fact that reality does not coincide with the beliefs of advocates of "new" diseases. Guy (Help!) 17:02, 3 April 2015 (UTC)

Here is my draft in user space: Morgellons Disease Foundation.

What do you all think? Shall I submit this as a new article? I've been careful to be

and make it clear also that they are an advocacy group. And end with the conclusion, "Note, that all this is leading edge research, and has not reached the stage where it is generally accepted by the medical profession.".

I think it would be acceptable as an article according to wikipedia guidelines. And then you could link to it in the lede and that would, I think, also defuse a lot of the hositility of some of the posts in this talk page too. It shows that wikipedia is covering the topic, is not ignoring it, which I think is the main thing of concern by many of the posters here. And by making it clear that it is leading edge research and that this is an advocacy group - is a way to bypass all the issues that you feel make it hard to cover it here. Robert Walker (talk) 12:51, 3 April 2015 (UTC)

"Leading edge" is loaded and the MDF position has generally been rejected (rather than not yet accepted) by the medical profession. 109.144.222.250 (talk) 12:57, 3 April 2015 (UTC)

It's a draft, it can be edited to be more

WP:POV

still. I can see your point there. However, the Mayo clinic summary doesn't read like a rejection of it to me, and they are reasonably reputable are they not? I think to say it is rejected is to go too far the other way.

Here is another suggestion for the conclusion, use "cutting edge" rather than "leading edge" and removing suggestion that it will some day be accepted:

"Note, that all this is recent "cutting edge research", and is not at present generally accepted by the medical profession.".

I don't think you can say it is rejected, or that it is not accepted at all by anyone, that seems going too far from the cites.

But "not generally accepted" seems okay. I've edited it with this new version of the last sentence conclusion. Robert Walker (talk) 13:04, 3 April 2015 (UTC)

Hi Robert, "cutting edge" is just as loaded as "leading edge". The research is marginal and unproven. I understand you may not want to say that, so perhaps it would be best not to characterise the research at all? Take your point about "rejected" and agree that "not generally accepted by the medical profession" is good (omitting "at present" to remove the suggestion that it will some day be accepted, as you say). Result: "Note that this research is not generally accepted by the medical profession." 109.144.222.250 (talk) 13:21, 3 April 2015 (UTC)

Okay I'm fine with that, have edited it accordingly. Of course details of sorting out the article to make it

WP:NPOV are likely to be result of discussions of many editors after the article goes into main space. But can do our best to get it off to a good start, and I'm happy with that as the final sentence myself on the basis of the material I've read on it so far. Robert Walker (talk

) 13:42, 3 April 2015 (UTC)

The article you're starting on has some significant issues, so I've tagged your draft, pointing them out to you so that you can work on resolving them before submitting it. Fundamentally, you need to locate independent secondary sources instead of relying on press releases, etc. Also the article cannot 're-litigate' what's found it other articles, see

WP:POVFORK. Zad68

13:47, 3 April 2015 (UTC)

Okay, saw the tags and wondered about that. I have removed all the quotes from the footnotes, I assume that is the main "coatrack" issue? It wasn't meant to be a way of upholstering their views, just a way for users to know what they are that's all. Anyway now it is just a list of cites to articles on the topic. Does that fix the coatrack?

Seems to me that the Mayo Clinic reference of them is a reasonable secondary source to show that they are a significant organisation. Also that they are a 501(c)3 charity. And that they organize yearly conferences with many speakers. Also as a page about an advocacy group, the secondary sources need to show notability, but no more than that. So long as the article clearly states that they are an advocacy group, which it does. There are many pages about various groups on wikipedia that have far less to substantiate them than this, and they are accepted as articles. Robert Walker (talk) 14:02, 3 April 2015 (UTC)

I've found a critical news report as well, which may help to add balance to the article. See the bit at the end that I've added: "Some professionals have shown concerns about some of the treatment regimes prescribed to Morgellons patients." Robert Walker (talk) 14:24, 3 April 2015 (UTC)

I've made this into a new section

WP:NPOV by other editors once it is in mainspace. Robert Walker (talk

) 14:33, 3 April 2015 (UTC)

(ec) It looks like the draft article will be mostly a

WP:POVFORK

to re-present essentially the same topics as this article, but with a friendlier slant to the fringe perspective. (Creating a "Criticisms" section is just a way to shuffle off the negative stuff to the very bottom of the page.) There's very little information about the Foundation itself (the nominal subject of the draft article), none of which comes from independent sources. The draft is dominated by big Morgellons-friendly pull quotes and overly-detailed information about their really quite minor conference.

In all honesty, it's just a little tiny 501(c) charity that would like to pretend it's a big, important 501(c) charity. (This is not uncommon among charitable organizations and foundations; every charity wants to be thought of as important.) They've got a snazzy website with a large (if not particularly impressive) list of directors and advisors, and some nebulous claims about the research and education programs that they're funding.

If you pull their Form 990 (PDF link, note that their IRS filings are also under "New Morgellons Order Inc."), you can see that in 2013 (the last year for which tax filings are available) they had total disbursements of...about $55,000 (line 17). Of that, they made $29,873 in grants; schedule O (page 9) identifies just two recipients for that money: Marianne Middelveen ($8,118) and the New Haven Lyme Disease Program ($13,500). The remaining spending (about $25,000) went to the website, marketing, travel expenses, and their conference. And 2013 was a better year for revenue than was typical for the Foundation. They have no full-time staff, no part-time staff, they award a handful of very small grants, and they have an annual get-together for their small band of believers.

It really looks like the organization isn't sufficiently notable to require a separate Wikipedia article, and any article that is created on the topic is likely going to end up deleted. TenOfAllTrades(talk) 15:14, 3 April 2015 (UTC)

Okay, I can see your points.

If you prefer the criticism section to go at the top of the page, before the statement of their views, I can do that. Actually, I thought that the end position was more prominent actually myself.

If it is a matter of balance, well why not expand the criticism section? Any suggestions of more material to include there?

The article would have to cover the nature of the research they cover. So I don't think that can be an objection. I don't mean it as a POV fork of this article. But rather - that this is an advocacy group. You've explained that their researches don't belong in this article, and I can understand the reason for that - but still are notable in the sense that they are causing controversy and debate, and are quite widely mentioned, and I think do belong in an article about the group itself.

It's useful to have the information about their level of finance. I'll add that in, to help reader judge the size of the organization in terms of finance. I don't think the level of finance by itself is enough to judge their notability which is what is the basis for deciding whether to cover them in wikipedia or not. Some organizations with large amounts of funding may not be notable and some with hardly any funding may be notable. Also there are many small organizations covered by separate wikipedia articles. Their activities seem to have lead to a fair bit of controversy and coverage, seems to me. It does have cites in independent sources, two of them quite critical, the article in the Atlantic and the Harry Quinn Schone criticism., and then neutral, the Mayo clinic mention.

I removed all the quotes from the footnotes, so - there is now one quote from Marianne J. Middelveen, one from the Mayo clinic, and then the other is just a short one sentence quote about their advocacy of scientific research. It doesn't seem excessive to me, considering that they are an advocacy group, and this is what they are advocating. Robert Walker (talk) 15:50, 3 April 2015 (UTC)

You've completely missed the point of what both TenOfAllTrades and I have been telling you, please review what we actually said. Zad68 15:55, 3 April 2015 (UTC)

Sorry I don't understand. I've read what you say. It seems okay to me. So long as it is done in a

WP:GNG" ( Notability of ICASMR

. I suppose it is because of that experience I got this idea of treating the Morgellons foundation in a similar way.

So, it's been my experience that the wikipedia guidelines on notability for small organizations are reasonably inclusive, and I think myself that this article on the Morgellons Disease Foundation would also pass them with the cites it has already. I've also been a PROD patroller on occasion and the articles are often about quite small topics (e.g. you can do an article about any star visible to the naked eye). If not, well would be a matter of searching for more cites, including news stories. For an advocacy group, then news stories are a reasonable way of establishing notability. Robert Walker (talk) 16:08, 3 April 2015 (UTC)

Added in a finances section, which makes it clear they are financially a small organization, and expanded the criticism section with another quote. Robert Walker (talk) 16:23, 3 April 2015 (UTC)

Also retitled it to Concerns about influence on patients of the researches sponsored by the Morgellons Disease Foundation. Expresses more accurately the intention behind that section. Robert Walker (talk) 16:27, 3 April 2015 (UTC)

Do say more if there is some important point I'm missing. And - it's just a suggestion at this stage, is a user draft, not yet an article. Thanks! Robert Walker (talk) 16:30, 3 April 2015 (UTC)

If that goes to main space, I will be nominating it for deletion as a

WP:POVFORK and as lacking any credible evidence of the significance of the organisation. It's a tiny group promoting a quack diagnosis, and it is adequately covered in this article along wiht the essential context on the bogus nature of its claims. Guy (Help!

) 16:55, 3 April 2015 (UTC)

As far as I can see it is not covered in this article at all. Just searched the page to check. Maybe it was in the past? Please, don't be so hostile towards me. I just did this as a user space draft and in the hope it would help. It doesn't seem obviously "quack" or fringe to me, because of the mention in the Mayo clinic particularly. I don't think the Mayo clinic would mention an organization that was known to promote a quack diagnosis. And the authors of the papers seem genuine as far as I can judge that they believe in their own research, especially Marianne Middelveen, Morgellons Disease Marianne Middelveen talking about her research, seems like a genuine person to me and not someone out to make money out of it either. I'd welcome other views on this also as other editors may have diverse views on whether wikipedia should have an article on the topic. Robert Walker (talk) 17:07, 3 April 2015 (UTC)

Just retitled that section to just retitled it to Concerns - as the previous title suggested that the foundation themselves are promoting treatment with antibiotics which I don't think is true, they are just promoting research, and not any particular treatment. Robert Walker (talk) 17:12, 3 April 2015 (UTC)

(ec) Yes, you're still missing the point, per Zad68. You still haven't identified independent third-party sources that actually discuss the Foundation itself and indicate that it is

independently notable. You've just created an article that essentially restates their claims and website, with a tacked-on bit about criticism of Morgellons disease. It's not a useful exercise or article, because we already have an article that does that in a more thorough and more neutral way: this one. The fact that you have to go digging through old IRS filings (actually, the fact that I had to go through their old IRS filings) to find any sort of specific and detailed information about the Foundation's activities should tell you how little independent coverage they have actually received. TenOfAllTrades(talk

) 17:45, 3 April 2015 (UTC)

Okay. Yes, just copied over what you said about the finances - have simplified it now, just says "Their funding amounts to about $50,000 a year, which is used for small grants, website, marketing, travel expenses and an annual conference."

It's just a draft for dicussion. I've removed the criticisms section, since aim was not at all to do a POV fork of this article, It reads better I think as just a short article as it was before I added that section, ending with the sentence "Note that this research is not generally accepted by the medical profession." and can leave them to come to this article to find out more.

Latest: User:Robertinventor/Morgellons_Disease_Foundation

We don't have anything in wikipedia says that this organization exists AFAIK or says what their aims are, so not sure what you are saying there. My own vote still would be that it seems notable enough to have a separate page, since the bar for a separate article on wikipedia is not particularly high, e.g. any naked eye star, however faint, is notable enough for an article, to give an example from a different topic area. Robert Walker (talk) 20:56, 3 April 2015 (UTC)

Yes we do, this article. Mere existence is explicitly not a criterion ofr a separate Wikipedia articles. The only things that should have articles are those which have been the primary focus of non-trivial coverage in reliable independent sources: for crank groups like the MRF, the sources are invariable either reliable or non-trivial. The only coverage in mainstream sources are as background and namechecks in articles that are actually abut the bogus disease itself. Guy (Help!) 22:14, 3 April 2015 (UTC)

Sorry - I think it must be some communication glitch, I can't make sense of your first sentence, when you say "Yes we do, this article". It seems to me that you are saying that this article covers the topic of this draft already, which is the Morgellons Disease Foundation. But it doesn't. There is no link to it or mention at all as far as I can see. Or is there? Or are you saying something else? I'm missing something there. Sort of thing that can happen easily in text based conversations I find.

As for the guidelines on notability, yes, checking now, in

WP:GNG - it says "Significant coverage is more than a trivial mention but it need not be the main topic of the source material". It doesn't go so far as to say it has to be primary focus. But I can see what you mean there, that for instance the Mayo Clinic mention is not significant coverage in that sense. It may depend then on whether anyone has any other cites with more extensive coverage in reliable sources like the Mayo clinic. Robert Walker (talk

) 22:39, 3 April 2015 (UTC)

And just to say, I know far too little about all this to make a judgement myself, either way. I've known expert researchers to make mistakes and climate of opinion can change in medical matters, so I don't automatically assume that the established views are right. And the researchers seem genuine, at least, just now listening to Marianne J. Middelveen in the radio interview of her, I felt she came over as genuine, and what she said seemed believable and credible. And I see nothing obviously wrong with the papers, if the data is correct, and no reason to suppose the data is falsified. So, I just keep an open mind about it myself. After all, it's not so long ago that it was accepted that Helicobacter_pylori causes stomach ulcers. Before the mid 1980s the received wisdom was that bacteria can't grow in the acid conditions of the stomach, so it couldn't have a microbial cause. The discoverers got the 2005 2005 Nobel Prize in Physiology or Medicine.

So, though it does seem the received wisdom of the medical community that it is a psychosomatic disorder, I think we need to be careful about making the additional deduction, that therefore this research has to be incorrect, or deceitful, etc etc. Or to deduce that their research has to be wrong. As scientists we need to keep open minds both ways. Including the possibility of new results coming in out of left field and overturning received wisdom on the subject. Even if we think it is improbable. But it works both ways, scientific verifiability. It can end up with new results being verified that surprise everyone. Robert Walker (talk) 01:37, 4 April 2015 (UTC)

Per established policy, Wikipedia content reflects the current scientific consensus. This isn't open to negotiation here - if you want to propose a change of policy, I suggest that you do so in the appropriate place. Because without such a change in policy, your personal opinions regarding whether researchers seem 'genuine', along with your speculation about 'new results.. overturning received wisdom' has no bearing on the way this article will be written. AndyTheGrump (talk) 03:10, 4 April 2015 (UTC)

Yes of course, I'm not talking about that. Of course my opinions have no bearing there. Just saying that other editors personal opinions on the matter also should have no bearing on how the article is written either.

It is when some editors here go one step beyond and say that they are a quack organisation, or that they are bogus. I think there is no evidence of that at all. Yes one of the researchers in this field - just one of 10 in the recent conference listing, two decades ago, was proved to have falsified data. But that's not enough reason at all to blacken the whole organization. All I see are researchers who are trying to prove a hypothesis that their early results suggest is true. And there is nothing wrong at all in scientific experimental work about attempting to prove a hypothesis that your colleagues don't believe is true. That's not psuedoscience, we can all think of examples where that's what lead to a breakthrough - gave one example above. It's only pseudoscience if you ignore experiments that disprove your results or make statements that are so unclear in their meaning that there is no way they can be falsified by any experiment at all, and you just shift the meaning depending on what you observe. All that is pseudoscience, but I don't see any evidence of that here.

So - I agree that their research is not established and the consensus is that the are wrong. But in an article about them as an organization is no need at all to deduce that therefore they are quack, or say that they shouldn't be mentioned because you think they are wrong, and say that their papers and conference shouldn't 'be mentioned in an article about them as an advocacy group. Every indication, at least from what I've seen so far, is that it is genuine scientific research following scientific methods, but minority research. Do you see what I'm saying here?

Even extremely minority research can be covered if it is presented as such and is sufficiently notable to be covered. For instance in astronomy, then the opinion of Hoyle and Wickramasinghe on diseases from space is a minority view held by fewer researchers in the field, only those two and an occasional co-author. Yet it is notable - everyone who is up to date on astronomy and astrobiology has heard of their views, even though hardly anyone apart from those two thinks it is at all likely. So - this is how wikipedia covers it: Hypotheses on extraterrestrial sources of illnesses. And in that case for instance again - their ideas about diseases from space is not generally accepted. But they had many other ideas that are now accepted. The general idea of the possiblity of Panspermia, that microbes can theoretically at least be transferred between celestial bodies via meteorites, is accepted by everyone in the astrobiological community now. Though when I was young, only Hoyle and Wickramasinghe were arguing this way.

It's not the place for a wikipedia editor to suggest their research is going to be the new consensus in the future, naturally! But it is also not the place for a wikipedia editor to say that some particular line of research can never lead to anything. It's just not our job to do either. Just to check it for notability. If it passes that test, then we have to cover it in as

WP:NPOV a way as we can. If it doesn't then we don't cover it. And if it is fringe and notable, we label it as fringe but still cover it. If it is minority research ditto, label it as minority and still cover it. But in either case might not be the most appropriate place to cover it in an article on a medical condition - it might be that it is notable enough so we need to cover it, but that sometimes it needs separate treatment. Here I'm suggesting that it may be notable enough to cover it as the views of an advocacy group. Robert Walker (talk

) 03:58, 4 April 2015 (UTC)

'Separate treatment' would constitute a POV fork. AndyTheGrump (talk) 04:07, 4 April 2015 (UTC)

Some types of POV forks are acceptable. I'd say this is related to

Articles whose subject is a POV. It is not attempting an article fork of Morgellons. Because it is not attempting a comprehensive treatment of Morgellons and it states quite clearly that it is covering an advocacy group, and the views of that group, and it also says clearly that "Note that this research is not generally accepted by the medical profession" It is my understanding that an article like that is acceptable. Robert Walker (talk

) 04:29, 4 April 2015 (UTC)

What sources will you be citing to demonstrate that the MDF meets Wikipedia notability guidelines? You will need to demonstrate "significant coverage in reliable sources that are independent of the subject". I can see little evidence of such coverage in your draft. AndyTheGrump (talk) 05:07, 4 April 2015 (UTC)

Incidentally, you seem to have got the name of the organisation wrong. [9] AndyTheGrump (talk) 05:15, 4 April 2015 (UTC)

We are not asking Wikipedia to declare that a particular line of research can never lead to anything. In reflecting the current scientific and medical consensus, we only make the reasonable judgement that a particular line of research has not yet led to anything (credible)—and unless or until it does, it's not appropriate for us to cover minor, non-notable 501(c)(3) charitable foundations devoted to those widely-rejected ideas.

And we particularly don't add coverage of minor, non-notable 501(c)(3) charitable foundations devoted to those widely-rejected ideas solely or largely as a way to provide expanded coverage of those ideas. That's pretty much the definition of a

WP:COATRACK

.

Incidentally, I've noticed that you're taking a lot of stuff "personally", on behalf of the small number of individuals (particularly and especially Marianne Middelveen) who publish favorable papers in this area. Watching video clips and declaring that she comes across as "genuine" entirely misses the point, again, of what we're talking about. It is possible for people to hold beliefs that are simultaneously a) completely sincerely held; b) factually incorrect; c) likely to cause harm to other people if acted upon; and d) held by such a small minority (with so little independent coverage) as to not justify or warrant extensive Wikipedia coverage. TenOfAllTrades(talk) 12:27, 4 April 2015 (UTC)

Again of course I agree that her research could be factually incorrect. That is true of all science, indeed the scientific method is such that even the most widely held beliefs in science could in principle be proved to be factually incorrect by a series of repeatable experimental observations that go against the predictions. Just saying that as far as I can tell they are following the scientific method in their researches. I'd characterize it as Fringe science in the first sense given on that page, as valid science (in sense of following the scientific method and published in peer reviewed scientific journals) but not mainstream.

"Fringe science may be

field of study

."

As to whether it is notable enough to merit coverage - if that's the main point then I think it is worth searching a bit more. First thing I'd do there is to contact the organization themselves. Because if they have had coverage of this type, then chances are high that they know about it. Explain that we are looking for coverage by a reputable organization, giving the Mayo clinic, as an example - but a reference that is more than just a passing mention, that discusses their organization in some depth - and that is not a direct result of their own self promotional activities (such as writing to reporters) or a mention in articles written by the researchers themselves. Then we can decide whether to include it as an article based on that.

And also please note, there is no need to have any concern about this article in my user space. I would not add this as an article to the main space unless there is a reasonable consensus that this is a good thing to do. At present it seems that I'm the only one here saying that the proposed article is notable enough to be included. That might change if we can find better evidence of notability. But for as long as there is only me here suggesting that it is good to have this as an article, I can't see it being added.

With the other points - I say it depends on notability. If there is sufficient evidence of notability then it should be covered, and if not, then not. I can understand the point about potential harm from following their advice. After someone explained that early in this discussion, I saw the point right away and it seems an understandable reason for not covering them in the main article. But it doesn't, for me, seem sufficient reason for not covering them as an advocacy group. Or indeed for not covering the researches as Fringe science in the first sense of the word, so long as clearly labelled as such, and if it is considered to be notable enough to be covered.

I've done a couple more changes. I've added a sentence to the lede labeling it as Fringe science not mainstream. Also, now that now that the article mentions the CDC report, I felt it should therefore mention the suggestions made by these researchers that the cotton fibres extracted by the CDC are surely indeed from clothes and swabs - but that the fibres they are studying are far smaller, require 60 times magnification to be seen, and can be found subcutaneous, beneath unbroken skin.

Also added an "Activities" section as well which I felt should mention the yearly conference. It is okay as just a one sentence bullet point mention, so that is how I did it now. But it meeds to be mentioned in the article somewhere I think, as that is one of their main activities.

Then apart from that, I can check with them to see if they have any materials that can establish notability. Then would see if they provide anything suitable enough to convince the other editors here that it is a notable organization. And leave decision about whether to include it as a new article until then. Are you okay with this? Robert Walker (talk) 14:16, 4 April 2015 (UTC)

If it is necessary to 'contact the organization themselves' to find evidence of notability, they aren't notable... AndyTheGrump (talk) 14:20, 4 April 2015 (UTC)

Oh I wouldn't say so. Google and Google scholar are pretty good, to the extent that nowadays many people tend to take them as the only criterion for notability - but not infallible. Often you search with one key word and don't find something, use a slightly different keyword and it goes to the top of the results. And it can't search material that is behind a paywall, so that can rule out significant scientific articles and reviews if the material is not mentioned in the abstract. And it also can't search material served up dynamically from databases in response to queries. And it is limited in its depth of coverage, it doesn't by any means index all the pages from every site it visits for large sites. I think many people don't realize that it is limited in this way. And we don't need that much by way of material to make it notable according to the wikipedia guidelines on notability. An article behind a paywall for instance on Scientific American, Nature or New Scientist covering the organization in some depth I'd have thought would be plenty. Or significant coverage in a reputable text book which doesn't have its contents indexed by google scholar or google books. That's why I'd ask them. Robert Walker (talk) 15:38, 4 April 2015 (UTC)

Since there has been significant coverage of Mitchell's "condition" in the media, it needs short mention here. It is currently mentioned in this section of her article here.

This is obviously not covered by MEDRS, but by the normal RS rules. Here are some sources, with some of her statements:

• Joni Mitchell and the mystery of Morgellons disease

In 2010, Mitchell told a reporter at the Los Angeles Times that she has a "weird, incurable disease that seems like it's from outer space." She said the condition is the reason why she often hides from the public eye. Mitchell described seeing "fibers in a variety of colors protrude out of my skin like mushrooms after a rainstorm: they cannot be forensically identified as animal, vegetable or mineral."

"Morgellons is a slow, unpredictable killer -- a terrorist disease: it will blow up one of your organs, leaving you in bed for a year," she continued. "Morgellons is always diagnosed as 'delusion of parasites,' and they send you to a psychiatrist. I'm actually trying to get out of the music business to battle for Morgellons sufferers to receive the credibility that's owed to them."

• Morgellons Disease, Joni Mitchell's Condition: Yes, It's 'Real' (NOTE the quote marks around "Real". The author recognizes the mental condition.)

• Joni Mitchell's Mysterious Skin Disease: What Causes Morgellons?

• Inside Morgellons: Joni Mitchell’s Mystery Illness

"I couldn’t wear clothing. I couldn’t leave my house for several years. Sometimes it got so I’d have to crawl across the floor. My legs would cramp up, just like a polio spasm. It hit all of the places where I had polio,” she said at the time. “Morgellons is constantly morphing. There are times when it’s directly attacking the nervous system, as if you’re being bitten by fleas and lice.”

Mitchell was aware at the time, and is likely even more now, that many in the science world doubt her disease to be real. It’s a side that, for once, she refuses to see. “It’s all in the tissue and it’s not a hallucination. It was eating me alive, sucking the juices out,” she says. “I’ve been sick all my life.”

Does anyone have any suggestions for doing this properly? --

) 18:02, 4 April 2015 (UTC)

I'm not sure. I thought that, generally, the rule of thumb for disease articles was not to add lists of "celebrity" sufferers (or celebrity endorsements). The exception tends to be instances where the disease is particularly well known because of a particular celebrity sufferer. Joni Mitchell is not strongly linked in the public mind to Morgellons in the same way that, for example, Stephen Hawking (and his wheelchair, and voice synthesizer) are linked to

amyotrophic lateral sclerosis. It's not clear to me that she should be mentioned at all in this article. TenOfAllTrades(talk

) 19:10, 4 April 2015 (UTC)

Yup. Joni Mitchell isn't notable for having Morgellons (whatever that signifies), and Morgellons isn't notable because Mitchell has it. Possibly if she attracts commentary over a significant period, it might be worth mentioning, but I don't think a brief flurry of media interest is enough to justify this for now. AndyTheGrump (talk) 19:31, 4 April 2015 (UTC)

Good points. Right now mention in her own article is likely sufficient. Thanks. --

talk

) 19:57, 4 April 2015 (UTC)

The tone of this article is almost mocking rather than serious or biased. It clearly presents one side of the argument while discounting the other without references or support. This article clearly needs to be rewritten to meet wikipedia objectivity standards. The Moody Blue (Talk) 23:08, 4 April 2015 (UTC)

Please familiarise yourself with

WP:NPOV policy, and the explain exactly why you think the article violates it - a simple assertion of 'bias' unaccompanied by any policy-based arguments is insufficient to justify tagging the article. AndyTheGrump (talk

) 23:11, 4 April 2015 (UTC)

Specifically this article violates the sections the following: Structure by segregating text to make one side seem unsupported (WP:STRUCTURE), undue weight to one side of the argument (WP:WEIGHT) in it gives undo weight to "aspects of the subject including distorting " criticisms, or news reports about a subject" to make a fallacious case for one side (WP:BALASPS); It clearly violates the requirements of (WP:IMPARTIAL) which states that a controversial article "requires presenting viewpoints with a consistently impartial tone". The self appointed editors on here need to FIX the article instead of simply reverting tags. This article violates each of these requirements and should remain tagged until such time as they are ALL fixed to the overall satisfaction of editors; in other words, a consensus. Please don't change it until corrected. The Moody Blue (Talk) 23:23, 4 April 2015 (UTC)

Nope. It doesn't work like that. You don't get to slap a tag on an article and then demand a consensus before it is removed - there was no consensus to add it in the first place. I suggest you actually read the sources cited by the article - which establish that there is a clear and unambiguous scientific consensus that Morgellon's is a form of delusional parasitosis - and then explain here why

WP:NPOV policy should not accordingly be followed in making this simple fact clear. We DO NOT give 'equal weight' to fringe theories in articles just because someone makes vague assertions of 'bias'. As an encyclopaedia, per long-established policy (arrived at by consensus) we reflect the views of the scientific mainstream. And the views of the mainstream are not open to question regarding Morgellon's. AndyTheGrump (talk

) 23:34, 4 April 2015 (UTC)

I agree that there is no current justification for a tag of shame. Solid and VERY specific arguments should be presented here and then let's fix the problems. If there is no resolution, then add the tag and proceed with further dispute resolution. --

talk

) 00:23, 5 April 2015 (UTC)

Fine, I give up. You win. Write what you want. Arguing with wikipedia editors is like trying to dig a hole at the beach. It never gets finished, lots of other stuff fills the hole in that shouldn't be there, and the tide of people who think they are the guardians of actual knowledge wash it away like the tide. If you guys actually had any evidence for your positions, I would like you to post that specific, concrete evidence. In actual medicine, very few conditions have enough known about them that one could say that "the views of the mainstream are not open to question regarding Morgellons." That is simply bad research, bad medicine and bad diagnosis. However, you guys must clearly specialize in psychosomatic mass delusion like specialists such as Dr. Robert E. Bartholomew, who started the "this disease is a social disease spread by the internet" nonsense. The TRUTH is that neither side has much research at the moment to back up their position. It is a disease that may or may not be a psychiatric delusion, it may be parasitosis delusional syndrome, or it may be something new. Until I have seen proper research, I am not willing to say anything about it, and unless you are a research physician you are also not qualified to make statements such as "the views of the mainstream are not open to question regarding Morgellons". I simply don't know yet about this condition and its twin, Fibromyalgia. Until I do I will keep an open mind; that is good medicine and good research. You guys go ahead and write what you want, although I am sure you won't post what you demand of me to back it up - "Solid and VERY specific arguments". The Moody Blue (Talk) 00:47, 5 April 2015 (UTC)

See

WP:FRINGE for why we can't treat both sides equally. DreamGuy (talk

) 03:47, 5 April 2015 (UTC)

talk

) 05:06, 5 April 2015 (UTC)

Suggestion for another way to write the lede

I had another thought today about the lede. It's closely related to the

researchers in this field (in the sense of research following the scientific method and published in peer reviewed science journals, but not mainstream) think that it is caused by the same parasite in many patients.

Also note that

so is quite an old article. With just one archive.

While this article has 11 archives now, and there is a continuing on going battle between equally well meaning wikipedia editors and readers of the article.

I think that is some indication that there is an issue of some sort with the article, something that isn't addressed in it, to have so many complaints for so long with nothing resolved. While

Lyme disease controversy

seems to have hit on a good solution to a similar situation.

So why not model it on that article?

Problems with current lede

"Morgellons (/mɔː(ɹ)ˈdʒɛlənz/, also called Morgellons disease or Morgellons syndrome) is a condition whose sufferers have the delusional belief that they are infested with disease-causing agents described as things like insects, parasites, hairs or fibers, while in reality no such things are present"

• The established view, e.g. of the CDC, is that it's not a diagnosis at all, but just a name that some people use for a cluster of conditions, so starting with "Morgellons is a condition"... is paradoxical from that view as the CDC etc don't think it is a single condition
• It says "have the delusional belief " - We have a controversy here between patients and a small number of scientists who disagree with the majority of scientists and the CDC. That is enough so that the statement I think has to be qualified by saying who says this.
• It says "in reality no such things are present" - again since there is a controversy here, we have to say who says this.

New lede suggestion modeled on

Lyme disease controversy

That article starts with

"Chronic Lyme disease is a controversial diagnosis that encompasses post–Lyme disease syndrome, as well as "a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection".

So, I'd suggest modelling it after

Lyme disease controversy

and start by saying it is a controversial diagnosis.

And that article starts by saying "Most medical authorities advise against long-term antibiotic treatment for Lyme disease". So could say the same.

"Morgellons disease is a controversial diagnosis related to the

Lyme disease controversy. It's advocates claim that patients are suffering from effects of B. burgdorferi infection and other spirochetes, while the general consensus of the CDC and other medical researchers is that it is a form of delusional parasitosis

and that there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection".

Most medical authorities advise against long-term antibiotic treatment for Morgellons".

→

And later on

says

"An advocacy group called the International Lyme And Associated Diseases Society (ILADS)[15] argues the persistence of B. burgdorferi may be responsible for manifestations of late Lyme disease symptoms"

So similarly why not say, later in the article

"An advocacy group called the Charles E Holman Morgellons Disease Foundation, and previously another group the Morgellons Research Foundation, argues the persistence of B. burgdorferi and other spirochetes may be responsible for manifestations of Morgellons disease symptoms"

If it works for the Lyme disease article it could work here.

Just a suggestion. Robert Walker (talk) 07:57, 5 April 2015 (UTC)

Before we can even start considering your suggestion you must first provide reliable sourcing to support every claim. Surprising claims (those that go against scientific consensus) require extraordinary sourcing, see

WP:MEDRS is the guideline for sourcing biomedical content. Frankly, so far, your suggestions on this Talk page haven't been a very productive use of time. Zad68

15:35, 5 April 2015 (UTC)

Okay just trying to help, if nobody here finds my suggestions helpful then that's fine. I've got plenty of other things to do :). Robert Walker (talk) 16:47, 5 April 2015 (UTC)

Rothorpe (talk) 00:25, 2 April 2015 (UTC)

• UK /mɔː(ɹ)ˈdʒɛlənz/
• US /mɔɹˈdʒɛlənz/

has now appeared at Wiktionary, 'MorJELLons'. Rothorpe (talk) 17:53, 2 April 2015 (UTC)

Rothorpe, this is a great question. One thing I read guessed that Thomas Browne, who wrote the 17th Century work the modern name comes from, probably pronounced it "mor-GAY-yon" because of its French origin. Modern speakers seem to say "mor-JEL-uns" or "MOR-gell-ons" with either a hard or soft g. It's been hard to find a scholarly work to cite. This one indicates "mor-JEL-uns" and is the best I've found. Zad68 13:57, 6 April 2015 (UTC)

Nice to have an answer to this at last. I must say 'MOR(hard)gellons' was my instinctive pronunciation. The trouble with the Browne theory is that to get that pronunciation in French, a U would need to be inserted to keep the G hard: morguéllons. Anyway, I can believe both pronunciations are heard. My computer wouldn't give me the link, but it's been having trouble with ELs in general. Thanks anyway. Rothorpe (talk) 16:26, 6 April 2015 (UTC)

whereby the article should be based on reliable, third-party, published secondary sources and *accurately reflect current medical knowledge*.

Secondary is simply not enough. _New_ research should be included, particularly when it is a correction to null results. In addition, the article as started draws false conclusions. The CDC article concludes that more research is needed, whereby the article writer chooses instead of *claim* that the disease is psychological.

User:lizard1959 — Preceding unsigned comment added by 60.242.99.106 (talk) 05:34, 6 April 2015 (UTC)

Yes, I agree.

The CDC report mentions several limitations of their study in their conclusion^[1]

For instance, it was limited to KPNC enrollees with symptoms over the last 3 months, and so they couldn't describe the full clinical course of illness, or to assess risk factors for the illness. Also it was based on self diagnosed patients as there is no definition or diagnostic tests for the condition. And say that "There are few studies of Morgellons in the medical literature with which to compare our study findings." and cite only two previous studies, each based on a limited number of patients.

"Despite these limitations, our study provides a number of insights. The study was done among a well-defined and highly representative population of California, allowing generation of the first prevalence estimates of the condition and allowing us to look systematically for illness clustering. We extensively characterized the skin lesions afflicting case-patients, including systematic examination of intact and involved skin. We also performed detailed spectral and molecular analyses of fibers and other materials that have been reported as the condition's hallmark. Lastly, we assessed cognitive deficits, psychiatric co-morbidity and functional impairment among those affected."To our knowledge, this represents the most comprehensive, and the first population-based, study of persons who have symptoms consistent with the unexplained dermopathy referred to as Morgellons. We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition, as has been proposed by those who use the term Morgellons, or wider recognition of an existing condition such as delusional infestation, with which it shares a number of clinical and epidemiologic features . We found little on biopsy that was treatable, suggesting that the diagnostic yield of skin biopsy, without other supporting clinical evidence, may be low. However, we did find among our study population co-existing conditions for which there are currently available therapies (drug use, somatization). These data should assist clinicians in tailoring their diagnostic and treatment approaches to patients who may be affected. In the absence of an established cause or treatment, patients with this unexplained dermopathy may benefit from receipt of standard therapies for co-existing medical conditions and/or those recommended for similar conditions such delusions infestation"

So they didn't rule out any possibility of future developments in the field, which is what the article seems to imply and the editors of the article in their discussion. As you'll see in my proposal for a new lede below, I've suggested that it should be treated similarly to the

Chronic lyme disease

is impossible.

After all the NIH say that spirochetes do persist in animal studies in the case of Lyme Disease, including humans,so the controversy for Chronic Lyme Disease is over whether the are still infectious and whether they also persist in humans. "In one study, NIAID-supported scientists found that remnants of B. burgdorferi remained in mice after antibiotic treatment (J Clin Invest 122(7):2652-60, 2012). Another team of NIAID-supported investigators found that intact B. burgdorferi persist in nonhuman primates after antibiotic treatment. It was not possible to culture these bacteria and it is not clear whether they are infectious."

Mechanisms of persistence

.

To me, it seems that the situation for Morgellons is similar and that we should have a section, or a separate article, on

WP:NPOV

as far as you can get - scientific background, coming to it with an open mind. I don't know of anyone with the condition personally, and have no connection with any of the organizations involved. And to me this article seems to be biased, based on following up links and discussing it with the editors here to the point where as you see below, eventually I gave up.

My suggestion basically was to treat it as Fringe science in the first sense, as research following the scientific method and published in peer reviewed scientific journals but not considered to be mainstream. But I have had no support for that suggestion, so I left it at that. I think their basic argument, from previous discussion, is that it is not notable enough - it's of course generally agreed that Wikipedia should cover fringe science, and does, so it just being fringe is not enough reason to leave it out. Robert Walker (talk) 10:24, 6 April 2015 (UTC)

Why should new, inconclusive, research override previous (mainstream) conclusions? — Arthur Rubin (talk) 17:52, 6 April 2015 (UTC)

It doesn't. You just cover it if it is notable, you don't say it is right. As with the

Lyme disease controversy

where the research in favour of chronic Lyme disease is considered inconclusive by most, and not mainstream, but is notable enough to be mentioned.

In case of some of the fringe science ideas covered here in wikipedia, they have been considered fringe for decades. E.g. the Viking labelled release then Levin's conclusions that the Viking lander detected life on Mars have been considered Fringe science in this sense of following the scientific method but not mainstream since the mid 1970s. It's handled by adding a quote from CNN "Though most of his peers concluded otherwise, Levin still holds that the robot tests he coordinated on the 1976 Viking lander indicated the presence of living organisms on Mars.".

So that's one way to do it. In the case of

Lyme disease controversy the article opens by saying " is a controversial diagnosis" which makes the situation pretty clear. There are lots of ways to cover fringe science once you decide it is notable enough to include, and no need at all to imply it overrides mainstream science. Of course you need citations also for the statements that it is fringe. Robert Walker (talk

) 18:11, 6 April 2015 (UTC)

"To maintain a neutral point of view, an idea that is not broadly supported by scholarship in its field must not be given undue weight in an article about a mainstream idea. More extensive treatment should be reserved for an article about the idea, which must meet the test of notability. Additionally, when the subject of an article is the minority viewpoint itself, the proper contextual relationship between minority and majority viewpoints must be clear."

For details, see Wikipedia:Fringe theories Robert Walker (talk) 19:09, 6 April 2015 (UTC)

(

WP:NPOV

.

To conclude that [the CDC] didn't rule out any possibility of future developments in the field just because they didn't explicitly state that they ruled out such developments is a misleading interpretation of the CDC paper. It is a logical fallacy to conclude that an idea is supported when the idea hasn't been mentioned, let alone explicitly ruled out. Ca2james (talk) 19:29, 6 April 2015 (UTC)

Reason for what I said about the CDC, I took this as an explicit statement that their research has limitations and can't be taken to rule out all possibilities of future developments in the field:

"We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition, as has been proposed by those who use the term Morgellons, or wider recognition of an existing condition such as delusional infestation, with which it shares a number of clinical and epidemiologic features ".

Also - for decades the mainstream view about Gilbert Levin's theory that Viking found life on Mars was that research in its favour was nonexistent - mainstream scientists simply discounted his interpretation of the results and ignored the papers he published. But everyone had heard of his ideas if you knew anything about the search for life on Mars, so it was undoubtedly notable. You can still cover fringe science even if mainstream views are that the research has no substance at all.

After all there are quite a few papers published on these ideas about Morgellons as related to Lyme disease and spirochetes, so you can't say the research on this topic itself is non existent. But similarly to Levin's researches, the mainstream scientists discount this research.

"A fringe subject (a fringe theory, organization or aspect of a fringe theory) is considered notable enough for a dedicated article if it has been referenced extensively, and in a serious and reliable manner, by major publications that are independent of their promulgators and popularizers. References that debunk or disparage the fringe view can be adequate, as they establish the notability of the theory outside of its group of adherents."

So - as I understand the guidelines, notability is the main thing therefore for fringe science, and the criteria for notability don't include a need for mainstream acceptance. Mainstream debunking or disparaging is also enough to make it notable enough to be mentioned in wikipedia. Robert Walker (talk) 20:36, 6 April 2015 (UTC)

So if that is right - then the main question is just, are they sufficiently notable - have they caused enough controversy for instance? If so it needs to be covered, otherwise the readers who come here to find out about it will leave wikipedia and search elsewhere for the information to try to find out more. As I did indeed. Which then shows that wikipedia is not covering a topic that some of its readers want to know about. As a reader, if there is a significant fringe theory or controversy in a topic area, you want to know about it. You don't want to be told it is true, you may even not care all that much either way if it is true or not, you just want to know about it because it is notable. Same as anyone who has heard of searches for life on Mars would be expected to have heard about Levin's ideas. Robert Walker (talk) 20:53, 6 April 2015 (UTC)

Whether scientists in other fields were proved right is irrelevant and such discussion is not appropriate here. Article content is not determined by what readers expect or want to see in that article: it's determined by what information can be

appropriate weight

.

If and only if there are

WP:MEDRS-compliant sources supporting the theory that Morgellons is a physical disease or discussing this controversy then a corresponding statement can be added to the article. Ca2james (talk

) 21:34, 6 April 2015 (UTC)

Sorry, can't have explained properly, I wasn't giving Levin as an example of someone who has been proved right. He hasn't, is still a minority view. For many decades only about 2 people thought there was any chance of him being right, and still, the mainstream view is that he is wrong.

Fringe science doesn't have to be proved right ever, or have any expectations to be proved right. It can be constantly debunked, and still is notable for that reason. You don't of course cover it as

WP:NFRINGE if considered notable enough to do so. And my own personal vote would be that probably it is, if this was taken to an RfC or similar. Robert Walker (talk

) 21:49, 6 April 2015 (UTC)

Whether the scientist in this other field was proved right or not, such a situation is irrelevant to this article and does not belong here.

Notability only applies when creating an article or deciding whether or not the article itself should remain on wikipedia. If you were creating another article then it would need to meet notability guidelines (and also not be a

WP:MEDRS. Ca2james (talk

) 22:09, 6 April 2015 (UTC)

In

WP:ONEWAY

that an article about Fringe science generally should mention the mainstream idea, but the mainstream article doesn't have to mention the fringe idea

It depends on whether the two are linked in reliable sources, and it's a matter of decision also. "If discussed in an article about a mainstream idea, a theory that is not broadly supported by scholarship in its field must not be given undue weight, and reliable sources must be cited that affirm the relationship of the marginal idea to the mainstream idea in a serious and substantial manner.". So, for instance, is this Scientific American article discussing the relationship in a serious and substantial manner? What is Morgellons Disease? Is it a physical or psychological condition?. I'd say so. It is refuting it of course. But that's fine for a fringe theory. Plus The Mayo clinic page. Plus all the many newspaper articles that cover this in the recent news about Joni Mitchell. Many of them mention this theory. I'd say myself that all this is enough to make a notable enough connection so that the mainstream article should mention it as a fringe theory. If not as a section, then as a separate article then. I suggested an article on the Charles Holman society. If not that, then a separate article on the theory itself as a fringe theory.

Just putting my 2 cts here. Not making a big thing about it. As I've said already I've got no personal connection with this at all and nothing invested in the idea :). Robert Walker (talk) 22:42, 6 April 2015 (UTC)

"Why should new, inconclusive, research override previous (mainstream) conclusions? — Arthur Rubin (talk) 17:52, 6 April 2015 (UTC")" Why should it be left out, not mentioned, ignored or discounted? Science does not stand still. — Preceding unsigned comment added by 38.88.222.106 (talk)

Exactly. And wikipedia has many articles, and sections in mainstream articles, about new and inconclusive research as well as long established Fringe science also, I gave examples, many more are easy to find. Robert Walker (talk) 23:17, 6 April 2015 (UTC)

I still don't see, why a new, inconclusive, study is notable. Even if there were a definite connection between Morgellons and a specific bacteria, one would expect an occasional inconclusive study. It isn't a survey article, but a single study. Even if it showed a connection, it wouldn't meet

WP:MEDRS, as it's a single (small) study, not a meta-study or survey article. — Arthur Rubin (talk)

15:16, 7 April 2015 (UTC)

I think I misunderstood what you were saying. You don't want to add a controversy section to this article (which is what I thought you were suggesting): you are instead pproposing that a new article be written that focuses on the fact that some think that Morgellons is a unique physical illness whereas mainstream science says it's a manifestation of a known psychological illness. I'm not convinced that this rises to the level of a controversy since there hasn't been much in the way of ongoing news coverage and there's no

WP:MEDRS-compliant medical evidence to support their theory. You're welcome to create the article and see what happens. Ca2james (talk

) 15:14, 7 April 2015 (UTC)

Okay I'll give that a go then. First draft: Hypothesis of a connection between Morgellons and Lyme disease - a rewrite of my article on the Morgellons Disease Foundation which had various issues with it. Hopefully I've learned from that one. Still in my user space for now.

As for the ongoing news coverage - well perhaps not a huge amount but it has come up a bit in news stories recently, mainly because of the connection with Joni Mitchell. Anyway, I've added a short section about that to the article. And,

WP:NFRINGE and have said clearly that it is fringe at the top of the page. Robert Walker (talk

) 17:35, 7 April 2015 (UTC)

Your draft appears to be a

POV fork. AndyTheGrump (talk

) 19:38, 7 April 2015 (UTC)

And

WP:OR. Wikipedia articles summarize what reliable sources say on a subject, not provide an editor's analysis of that subject. The CDC and Mayo stuff can only be included if there are reliable sources that say it. Also, the controversy is not just whether Morgellons is related to Lyme disease but whether Morgellons is a unique disease at all. Ca2james (talk

) 20:23, 7 April 2015 (UTC)

Sorry I don't understand how it is

WP:OR

, as the CDC and Mayo are reliable sources, and the Mayo section is just a straight quote from their website. The CDC one also is mainly quotes and I don't say anything OR there, I just summarize what they say themselves in the PLOS ONE paper - which is the paper summarizing the conclusions of the study.

I'm happy to trim out anything that is OR of course, but need to understand in what sense and how it is OR so that I understand what the problem is - you need to know what the issue is before you can fix it.

As for the POV fork, then as a fringe science then I don't think it is one of the disallowed POV forks. It's an article whose subject is a fringe science POV, see

WP:ONEWAY

makes it clear that Fringe theories are normally given a separate article, and in any case there are lots of examples also to model it on, where that is exactly how it is done as a new article, which need not be mentioned in the mainstream article - whether it is or not is a matter of discussion.

Thanks! Robert Walker (talk) 23:47, 7 April 2015 (UTC)

I've added a bit to the lede about the mainstream view being that it is not a unique disease. Robert Walker (talk) 23:51, 7 April 2015 (UTC)

Note also that I added quotes from the CDC next to my paraphrases of them, as footnotes. Perhaps it's not clear what they are - I've just edited the footnotes to make it clear that they are direct quotes from the CDC report. I started with them as quotes in the body of the text - but then it ended up with much of the article consisting of quotes from the CDC report which seemed disproportionate when the subject of the article is the fringe science. You can check the quotes - or of course the report itself, to make sure I paraphrased it correctly. Do suggest corrections if you see anything that needs to be fixed in the paraphrases. Robert Walker (talk) 23:54, 7 April 2015 (UTC)

Not only are you citing the Daily Mail - a source that should in the opinion of many experience contributors not be used at all (see repeated discussions on

WP:RSN) - but you seem to be citing it for something it doesn't say. The words 'Lyme disease' do not appear in the article cited. And the CBS citation is to a dead link. AndyTheGrump (talk

) 00:02, 8 April 2015 (UTC)

When you are the one deciding which quotes to include in an article, and you're not relying on reliable sources to decide which quotes are important, you are engaging in

WP:SYNTH thrown in) because you, not the reliable sources, are deciding that it's important. The CDC article and Mayo site can be used as reliable sources for statements in an article about a Morgellons controversy but using them the way you are by focusing on them in that article is OR. Ca2james (talk

) 00:13, 8 April 2015 (UTC)

AndyTheGrump Search for "Borrelia burgdorferi" - that's the spirochete which causes Lyme disease. I'm fine with removing that cite if it is not appropriate. It was just a cite to back up the sentence saying "This hypothesis has been mentioned in the news quite a few times recently", but can understand why some would say that it is better not to cite the Daily Mail even in a context like that. Robert Walker (talk) 00:20, 8 April 2015 (UTC)

Ca2james Oh, okay I understand now. I've seen the limitations mentioned but I think only in the articles by the authors of the fringe theory itself. So probably that section will be okay if I hunt up where I found the mentions of them, and then attribute it to them instead of presenting this as unattributed. I can't remember now where I read it, read it somewhere then went to the report and it confirmed what they said. But you are right, it wasn't the CDC themselves who drew attention to this paragraph in the report or the critics of the spriochete hypothesis, and I understand your point now. Robert Walker (talk) 00:20, 8 April 2015 (UTC)

Is there anything else while I'm at it? I'll probably do the editing tomorrow. Robert Walker (talk) 00:21, 8 April 2015 (UTC)

See User talk:Robertinventor/Hypothesis that Morgellons is linked to borellia spirochetes, and Lyme disease. Ca2james (talk) 17:36, 8 April 2015 (UTC)

Improvement with antibiotics

WP:NOTFORUM
The following discussion has been closed. Please do not modify it.
The fact that many patients with morgellons have improved with antibiotic use gives tremendous support to the theory that they do not in fact have morgellons but rather, the multi systemic bacterial parasitic infection of Lyme Disease which has either infected the central nervous system or neuro pathways of the brain causing damage to the myelin sheath of the nerves and giving the sensations of itching, crawling, and even in some cases, electric shocks throughout the body. Garyden1982 (talk) 15:21, 15 April 2015 (UTC) [3] References ^ Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy Michele L. Pearson, Joseph V. Selby, Kenneth A. Katz, Virginia Cantrell, Christopher R. Braden, Monica E. Parise, [1] ^ [2] ^ theresa Denham President of the Oregon Chapter of the Lyme disease network

Delusional Parasitosis

If this is just delusional parasitosis, why isn't the Morgelleon's article just a redirect to DP? — Preceding unsigned comment added by 69.65.91.78 (talk) 20:01, 18 April 2015 (UTC)

Because there are sources specifically discussing it detail. Take a look at Wikipedia:Notability. Morgellons is considered to be notable enough for an article, regardless of whether or not it is a valid diagnosis. Grayfell (talk) 20:08, 18 April 2015 (UTC)

Please at least mention the possibility of organic aetiology

As I said, if you do a simple search at least on pubmed, you'll find many studies done of the subject of a possible organic cause of Morguellons, I think that whether it turns to be organic or not, this view and the efforts done to corroborate it should no doubt me mentioned. Eg: http://www.ncbi.nlm.nih.gov/pubmed/25879673— Preceding unsigned comment added by 190.97.41.133 (talk) 16:56, 19 April 2015 (UTC)

the term "delusional" is NOT neutral

If Wikipedia truly wants to present a "neutral" stance, it would do well to remove the term "delusional" as if this were indeed fact. By all appearances, the condition is still being researched and the CDC study does not close the case as a final answer. Perhaps Wikipedia could borrow phrasing from the Mayo Clinic [11] and describe the Morgellons as "mysterious and controversial" or better yet "still being researched". Keep in mind that mainstream science was skeptical of Helicobacter pylori for some 30 years until dedicated scientists and medical research technology could prove its existence (and validate sufferers worldwide that it wasn't "just" their diet/neurosis/self-inflicted). 70.185.250.4 (talk) 14:15, 21 April 2015 (UTC)

We follow the sources here. You are under the mistaken impression that our NPOV policy means that we don't document very non-neutral facts, beliefs, and opinions, from very non-neutral sources. That is not the case. If we did that, we would fail our mission to document the sum total of human knowledge as found in reliable sources, and the encyclopedia would be a tenth its size and be extremely boring.

Reliable sources agree that Morgellons is best described as a "delusional belief" and a form of "

talk

) 14:22, 21 April 2015 (UTC)

Read Wikipedia:Neutral point of view for an explanation for what Wikipedia means by neutrality - our objective is to accurately report the current scientific consensus on topics like these, not to engage in a wooly-minded abstract 'neutrality' that taken to its logical conclusion would require that our article on the planet Earth suggested that it might actually be flat after all. And for the record, without 'mainstream science', nobody would know anything about Helicobacter pylori... AndyTheGrump (talk) 14:32, 21 April 2015 (UTC)

I would be reluctant to cite a selective reading of what amounts to a patient-targeted pamphlet – even one from the Mayo Clinic – over and above (or next to) robust secondary and tertiary sources written by and for clinicians and medical experts. The last section of the article gives advice to self-diagnosed 'Morgellons' sufferers. Tellingly, it doesn't say a damn thing about antibiotic therapies or parasites. Instead, it tells patients

• to find a health care team that "acknowledges" (note, not "accepts") their particular concerns;
• to be patient and let that team test for other, known conditions;
• to keep an open mind and be receptive to suggestions regarding mental health therapy; and
• to seek treatment for anxiety, depression, and other mood disorders.

In other words, when presented with delusional patients, they don't immediately say "You're delusional and totally wrong about your illness." Instead, they try to walk them towards the therapy that they need. TenOfAllTrades(talk) 15:36, 21 April 2015 (UTC)

Exactly... to put a bit of a sharper point on it, Mayo sells their services and so they're going to tailor their patient information to be acceptable to (potential) patients who may be looking for treatment. If they put right on their website "this is delusional" that would turn off many people. It's better to use scholarly instead of patient-focused material. Zad68 15:42, 21 April 2015 (UTC)

As much as I typically dislike Mayo, they seem to have done a very good job on this condition (that is, their approach aims to keep the patient coming back, and avoids naming a delusion outright). In terms of care of the patient, a good strategy (which is not typical of Mayo IMO) ... not encyclopedic, though, per TenOfAllTrades. SandyGeorgia (Talk) 15:46, 21 April 2015 (UTC)

Middelveen (2015) BMC Dermatology paper

The whole artcle has to now be rewritten to include new published research on Feb. 12, 2015. http://www.biomedcentral.com/1471-5945/15/1 WildAppleLeaf (talk) 06:18, 7 March 2015 (UTC)

No it doesn't. Read

WP:MEDRS: "All Wikipedia articles should be based on reliable, published secondary sources. Primary sources should generally not be used for health related content, because the primary biomedical literature is exploratory and not reliable - any given primary source may be contradicted by another, and the Wikipedia community relies on the guidance of expert reviews, and statements of major medical and scientific bodies, to provide guidance on any given issue." The study you cite is a primary source. AndyTheGrump (talk

) 06:50, 7 March 2015 (UTC)

http://www.mayoclinic.org/morgellons-disease/art-20044996?pg=1 Now that the Mayo clinic is being more neutral, maybe y'all can knock off the bully's game and start showing some objectivity! :)

Nobody is bullying anyone. Please go read

WP:MEDRS. Dbrodbeck (talk

) 15:57, 20 April 2015 (UTC)

http://www.people.com/article/morgellons-disease-first-person-cindy-casey-holman My goodness, here's another of these secondary sources popping up! And yes, the tone is quite derogatory, as multiple users have noted on this talk page over the last few years. — Preceding unsigned comment added by 72.211.105.197 (talk) 04:50, 8 May 2015 (UTC)

People magazine, umm yeah, no, that does not meet

WP:MEDRS. Dbrodbeck (talk

) 11:32, 8 May 2015 (UTC)

morgellons is not a delusion

Anybody can search online and find so much evidence including horrifying and vivid photographs - how can you say that morgellons is a delusion of the sufferer? I don't have it myself, but I have compassion for those who do. With this article, Wikipedia proves itself to be under the control of those who don't want us to know the truth. I will no longer use Wikipedia. Very disappointing. — Preceding unsigned comment added by Kellenrhoads (talk • contribs) 16:15, 8 May 2015 (UTC)

David Brin called the Internet "the net of a billion lies". There are already more lies than that. — Arthur Rubin (talk) 18:46, 8 May 2015 (UTC)

I meant to say that there already more lies than that about Morgellons on the Internet. You need better sources than that to convince editors. — Arthur Rubin (talk) 01:38, 9 May 2015 (UTC)

Neutrality concerns

This article shows that wikipedia unable to treat topics in a neutral and unbiased manner. This article suggests this condition is psychological, when it is a type of skin legion.

http://www.biomedcentral.com/content/figures/s12895-015-0023-0-1.jpg

This is a person with skin lesions and sores on their back, with visible fibers within the skin lesion. This is a picture from a peer reviewed study from a doctor studying the condition. This is what is being studied by doctors when they refer to Morgellons. According to wikipedia, these skin lesions are psychosomatic in origin and are created by the victim's thoughts and beliefs. According to wikipedia, delusions absorbed by the internet create skin lesions and fibers under the skin, like the above.

The article should reflect the fact that Morgellons is a cluster of symptoms, involving skin legions, whose origin is in dispute. This article attempts to redefine Morgellons into an internet hoax and shared delusion, when it is actually a dermatological skin condition.

Go to the acne article and tell people that their condition exists in their head and that "Scientific Consensus" says it does not exist and that belief in acne is transmitted by the internet and is a psychological delusion. There is an absolute Orwellian absurdity to this article and the level of censorship and misrepresentation.

Wikipedia is making me lose faith in humanity. There is no evidence that it is a psychological condition and there is no peer-reviewed studies or primary sources claiming that it is psychological in origin and therefore there is no valid claim to "consensus". When confronted with this, trolls respond "only secondary sources count" and when confronted with secondary sources they say "they are not valid because I dont agree with them".

Secondary sources and what some random person said in a newspaper is not science. Science requires systematic study, theories, evidence and data. An opinion piece by a doctor is not science. A statement by a doctor in a secondary source is not science.

This is not something mysterious or fictional. It is literally a very specific type of skin rash, which wikipedia editors are attempting to redefine as a psychological condition. This article needs to be split into two conditions, the psychological condition (psychosomatic) and the skin rash (dermatological).

This article is a pseudo scientific piece of biased and one sided propaganda which completely misrepresents the CDC findings as a conclusive positive finding, which the actual report was inconclusive and clearly stated that it could not come to a positive finding about causation. In other words, the article misrepresents and then lies about the content of a single study and then represents a position the study did not come to, as representing a strong "consensus" when the study itself disavows the existence of any such positive finding or consensus.

In defending these lies and misrepresentation wikipedia's editors disavow any intent at an unbias, neutral or true treatment and claim that wikipedia only reflects secondary sources that confirm their biases (neutrality be damned) and willfully states everything else should be ignored or censored from consideration.

First and foremost Morgellons is a dermatological condition (not a psychological condition). The article should clearly state that and have pictures of the condition. Then the article may speculate about the cause and nature of the dermatological condition and whether it is psychological in origin. 23.243.162.38 (talk) — Preceding undated comment added 00:16, 13 May 2015 (UTC)

This article complies with Wikipedia policies and guidelines - and accordingly reflects the overwhelming medical/scientific consensus that Mogellons is a psychological condition. That doesn't make it any less 'real' for those expressing the symptoms, and it certainly doesn't make it 'fictional'. And please read what you have written before hitting 'save page' next time... AndyTheGrump (talk) 00:32, 13 May 2015 (UTC)

Language

IMO we should strive to use boring neutral languages. So we should state "people with the condition" rather than "sufferers of the condition". The later language is not encyclopedic IMO. Doc James (talk · contribs · email) 22:35, 15 May 2015 (UTC)

Agreed. Dbrodbeck (talk) 11:31, 16 May 2015 (UTC)

Fork

I have redirected Hypothesis that Morgellons is linked to Lyme disease, with common cause of Borellia spirochetes, created by Robertinventor to here. It relied on two primary sources to create a POV fork. SandyGeorgia (Talk) 02:50, 20 May 2015 (UTC)

Good call. Dbrodbeck (talk) 02:53, 20 May 2015 (UTC)

User:SandyGeorgia - it is a fringe science article. Not a fork. With fringe theories, the recommendation is to do separate articles on the topic. See Wikipedia:Fringe_theories.

"Inclusion and exclusion of content related to fringe theories and criticism of fringe theories may be done by means of a rough parity of sources. However, if an article is written about a well-known topic, it should not include fringe theories that may seem relevant but are only sourced by obscure texts that lack peer review."

This article doesn't mention the fringe theory at all. So by redirecting it here, you have removed all mention of this fringe theory from wikipedia. That's like redirecting

Lyme disease controversy to Lyme disease. Wikipedia is here to cover fringe theories as well as mainstream theories - that's a principle that is long established and it has many fringe theories in it and an article in my view shouldn't be removed just because it is about a fringe theory. Robert Walker (talk

) 02:59, 20 May 2015 (UTC)

If you are suggesting that

Lyme disease controversy is based on two primary sources, with the rest of the article repeating content that is in the main article, I disagree with your comparison.

If you are stating that this article should mention the Morgellons/Lyme hypothesis, then perhaps if secondary sources cover that fringe theory, we should, too. SandyGeorgia (Talk

) 03:06, 20 May 2015 (UTC)

"With fringe theories, the recommendation is to do separate articles on the topic"? Actually, no. We cover fringe theories that have had "significant coverage in reliable sources that are independent of the subject". Your article ('essay' would be a more accurate description) cited almost nothing but primary sources. When it cited anything at all. AndyTheGrump (talk) 03:11, 20 May 2015 (UTC)

Sorry where do you get the two sources from? There are four scientific papers and as well, the Mayo clinic reference and some references to news articles reporting this hypothesis. Yes you marked two of them as primary sources - but those are permitted are they not for fringe articles? See References

I agree it's not as notable as the

Lyme disease controversy

but I think it still passes the border of what counts as notable for wikipedia.

Please note, I'm not at all an advocate for this hypothesis. I don't know any of the researchers or have any connection with them at all and haven't contacted any of them. I didn't create the article in order to promote the hypothesis. Just added it because I thought it was notable enough as a fringe theory to deserve mention in wikipedia.

I did suggest that this article mentioned this hypothesis. But as you'll see from the conversation above they thought it was not appropriate here. So then I thought, well why not just write it as a fringe science article - which then doesn't need to be mentioned by the mainstream article? And I discussed that idea also - above - then created the article out of that discussion.

You mention all sorts of other fringe theories in this article

"In 2008 the Washington Post Magazine reported that Internet discussions about Morgellons include many conspiracy theories about the cause, including biological warfare, nanotechnology, chemtrails and extraterrestrial life.^[1]"

All those hypotheses are mentioned based on a single citation to a Washington post article reporting internet discussions/

So why not mention the Lyme Disease connection which has articles in peer reviewed science journals? And is also reported in newspaper articles as well as by the Mayo clinic.

If you don't want to mention it in this article - that's okay - no reason why you have to - but then - well I'd remove the chemtrails and nanotechnology and extraterrestrial life etc hypotheses as well in that case.

And if you don't want the material included here - why not permit it as a separate "fringe science" article which you don't have to mention in the mainstream article? It seems the obvious solution to me, as a mainstream article doesn't have to mention a fringe theory article.

I just "don't get" it - as someone who comes to this from a reasonably neutral view I think with no prior preconceptions about Morgellons. I "don't get it" yet anyway. I'm ready to be persuaded, and have found in the past that the wikipedia guidelines are sometimes understood in ways that were not clear to me when I first read them. But so far, I don't follow the explanations given or understand how it relates to the guidelines I've read on wikipedia content. Robert Walker (talk) 03:24, 20 May 2015 (UTC)

References

1. ^ "Figments of the Imagination?". Washington Post Magazine. January 20, 2008.

First, I suggest you examine the quality of the sources at the example you provide--

WP:AFD. I don't think there's a snowball's chance in hell that would survive AFD, and I believe if you were to revert the redirect, the article would be submitted instantly to AFD, and it would be removed.

On the other hand, since we surely have secondary reviews debunking/discussing/covering the Lyme hypothesis, I don't know why that isn't covered in this article. SandyGeorgia (Talk

) 03:45, 20 May 2015 (UTC)

I'd rather get it settled here rather than AfD if at all possible. If it was covered in this article instead I'm okay with that also. I just feel that it has to be mentioned somewhere in Wikipedia. Don't care about how exactly that is solved. BTW I tend to repeat myself - have just trimmed my above comment to remove some repetitition - but it is essentially the same comment you replied to :) Robert Walker (talk) 03:55, 20 May 2015 (UTC)

I agree, no way is it as notable as

Lyme disease controversy. I couldn't provide a list of sources like that on this topic because they don't exist. But it is I think as notable as some fringe theory articles on wikipedia. BTW sorry to have put you to unnecessary work on the article. I realize that I never added a "Fringe theory" tag to the article which might have helped. Robert Walker (talk

) 03:59, 20 May 2015 (UTC)

I'm glad to hear you say that you think it should be covered in this article. If you look at the archives for this talk page you'll see that numerous other editors have been arguing just that point for months. But so far it's not lead to anything. I think because the editors here tend to think to be covered it has to be supported by MedRef criteria articles. But so long as it is clearly labelled as fringe science I don't think that is necessary at all to apply the MedRef criteria to it. Because fringe science has different criteria for notability. Robert Walker (talk) 04:05, 20 May 2015 (UTC)

Also just to say, I'm a non contentious editor. I don't do reverts, even single reverts, except in the most obvious of cases. I like to settle things on talk pages instead. So don't worry that I'll revert your redirect  :). Robert Walker (talk) 04:14, 20 May 2015 (UTC)

Could you please spend some time reading the talk page guidelines at the top of the page and try to learn how to thread discussions, sign them, not introduce wonky spacing, and keep your commentary brief? You have some posts unsigned, and others where you are signing every paragraph, and wonky indentation. I'm spending more time trying to sort out your poorly formatted and unsigned posts than I am digesting them.

Why do you think we would use primary sources anywhere for medical content? See

WP:MEDRS. And I think you're misunderstanding Mayo.

Perhaps the fastest way to solve this discussion is to restore the article and send it to AFD (no problem if anyone wants to revert me and do that-- just seems a longer course that will end up at the same place). I suggest that a more productive approach would be to cite from secondary sources the text you want to see included here on Lyme. The article you created claimed to source the Lyme controversy to secondary reviews, which means it's not fringe, and which means you should be able to cite that text here. But then you advanced the "fringe" section of the article on primary sources; so which is it? Two primary studies advancing a hypothesis for research, and reported on in the press, don't make a "fringe" theory; it's how science works.

Further, your article went way off-topic into territory unrelated to the medical issue, and please, consider article naming conventions; that name was unmanageable. SandyGeorgia (Talk

) 06:12, 20 May 2015 (UTC)

I have added a Lyme blurb:[12]. I'm sure it can be improved. SandyGeorgia (Talk) 08:50, 20 May 2015 (UTC)

Sandy - I've now manually archived that section to its proper place. I did sign it but the signature was in a second very short subsection which was then followed by a long discussion which was within that subsection. The archiving bot archived the second subsection and the entire thread but left the lede and first subsection on this page. I've now archived it all to its proper place.

See Archive 12#Is this article WP:NPOV? and then | You forgot the part....

At the time it was part of a very long and extensive talk page with many editors contributing because that was soon after the news story about Joni Mitchell broke. I came here along with many other editors to find out more about her condition and then was surprised to see no mention at all of the Lyme disease connection which I'd read about in a google search for information about her condition.

The way I understand this is in terms of fringe science in the first sense. See the Wikipedia article on Fringe science:

"There are differing definitions of fringe science. Fringe science may be valid science which is not considered mainstream. Alternatively, it may be a questionable scientific approach to a field of study. In any case, it is an inquiry in an established field of study which departs significantly from the mainstream theory in that field."

So - it has articles in peer reviewed journals. It follows the scientific method. But it is generally just ignored by mainstream scientists. I understand it in the first sense on that page, as valid science that is not considered mainstream.

The situation as I understand it is that mainstream scientists accept the CDC conclusions. They are not prepared to discuss any other scientific theories at present and have stopped research into the topic which was quite active before the CDC review. However a few researchers didn't accept the CDC's conclusions as final. They continued to research into the topic area and continue to publish their researches.

I searched carefully to try to find other studies that either contradict their conclusions or debunk them. The only thing I did find was one comment on a FL100 article by a reviewer - and a reply to it by the researchers leading to a short discussion thread. But in that case, both the article itself, and this discussion thread I felt were not notable enough to cite in wikipedia. I found nothing else.

Then as well as that there is a patients advocacy organization, the Morgellons Disease Foundation - and they raise funds as a 501 c(3) charity, which is mainly spent on an annual conference which has about a dozen contributers every year which reports the latest researches of this small group of researchers.

The nearest I know to this is the case of the Viking Labelled release, which Gilbert Levin to this day thinks discovered evidence of life on Mars. There's an even smaller group of researchers in that case, mainly Levin himself, and recently a few more researchers, who regularly publish research on this topic in peer reviewed journals, which is largely ignored by the rest of the scientific community. It is treated in wikipedia like this: Labelled Release which might perhaps give ideas about how to deal with the situation.

I think that it is good that the article now mentions it, but that - in my view - the theory itself should also be mentioned, in enough detail so the reader knows what the researchers hypothesis is.

Their hypothesis is that spirochetes related to those that cause Lyme disease infect keratinocytes and fibroblasts cells. They hypothesize that this infection alters their expression so that they proliferate and create micro-fibres of keratin / collagen beneath the surface of the skin. And they hypothesize that it is these micro-fibres that lead to the itching and painful sensations reported by sufferers. In support of this hypothesis they present research in which they analyse the micro-fibres and found that they are made of keratin and collagen. They also found spirochetes in all the Morgellons patients in their sample, using tests which they say are more sensitive than the ones used by the CDC. They also suggest a connection with Bovine Digital dermatitis which has similar symptoms of subcutaneous microfilaments of keratin and collagen. They accept that the CDC study found cotton fibres but they say that the microfilaments they study are a different phenomenon which you need a microscope to see, which wasn't investigated by the study.

I think that hypothesis should be mentioned somewhere in wikipedia. Whether as a separate article or as part of this one I don't care. And if it is a separate article I don't care whether or not this article links to it. It is something of interest to readers like myself to know that there is such a hypothesis being investigated as a fringe science theory.

BTW I'm a science blogger. And it is my plan to write this up as a science blog post after all this is over, as I think it is an interesting topic. There's an MSc thesis about it also, but it wasn't considered notable enough to mention it in the article - an earlier draft of it did mention it. At times I find it difficult to adapt to the way topics of this nature are treated in wikipedia - but am doing my best to follow the guidelines here. Robert Walker (talk) 11:25, 20 May 2015 (UTC)

I mentioned on your talk page (the appropriate place for that discussion) that you had made this talk page indecipherable, [13] and your response was to:

1. Write a post on this page without a datestamp.[14]
2. Add an incorrect date stamp and sig to old posts.[15]
3. Cut to archive that section (incorrectly signed, which makes me wonder what kind of mess this talk page archives are in).[16]
4. Discuss that section and the concern I raised on your talk, here in this section, which is about an entirely different matter. (Adding, by the way, an outdent, when there is none-- I mention that because you did that to one of my posts earlier.)
5. And then make five posts about the same matter to your talk page, which hits my watch list.[17] But, you
6. Never comment on the fact that I added mention of Lyme to this article.

Now, that sort of editing to this talk page explains the concern I raised on your user talk page: this article talk page and archives are being impacted to the point of disrupting article development. And we haven't even started to address the problems with your interpretations of policy and guideline above so that we can discuss content.

In good faith, after walls of text and trying to decipher archives and a messy talk, one is supposed to now spend another half hour sorting out a long post-- a good deal of which is not focused on article improvement-- and explaining policy and guideline to you. I am going to be traveling and unable to follow up on this, but as you indicate that you are still learning (yet your talk page doesn't indicate you are a new editor), I am wondering if you are ready yet to contribute to a discussion on a difficult and controversial medical topic. As I suggested on your talk, it might be helpful for you to strengthen your knowledge of Wikipedia policy, guideline, and protocols in a less controversial arena. I have to pack, so must leave it to others to attempt to address the confusion in your post above (if we all followed the logic you use for FRINGE, we would have a separate article on every primary source marginal hypothesis ever published). I would also suggest that you leave talk page archiving to others. SandyGeorgia (Talk) 12:35, 20 May 2015 (UTC)

Yes I forgot to sign my post but signed it soon after. I did mention your addition when I said "I think that it is good that the article now mentions it, but that - in my view - the theory itself should also be mentioned, in enough detail so the reader knows what the researchers hypothesis is."

I haven't edited the talk archive here before. I put it in the same place it was originally in the talk page to best of my knowledge. The posts in the archive are bound to be out of order, they nearly always are with big talk pages like that in my experience, because the archiving bot archives discussion threads only when they are inactive, which frequently puts posts into a different order from the one they were in originally in the talk page. That's none of my doing.

Sorry for the trouble I caused. Yes I'm a long term editor. I understand that the way I interact on talk pages is still causing problems here and I am sorry about that. I have no intention at all to disrupt anything and am doing my best to help improve wikipedia and am only sorry that for some reason, it seems that these matters of how I format and structure my talk page posts and edit them still keep getting in the way of communication here. Robert Walker (talk) 13:46, 20 May 2015 (UTC)

It rather looks as if I should leave this discussion now, so I will, unless anyone wants to take this any further. But I think the point I tried to make is an important one that someone should try to sort out. I.e. that somewhere wikipedia surely should state the nature of this hypothesis that these researchers are investigating, presented as fringe science. Best regards to everyone here. I do hope that some day, somehow this gets sorted out. Robert Walker (talk) 13:53, 20 May 2015 (UTC)

I see this article already has a {{

recruiting}} template, so this is just an additional heads up. SandyGeorgia (Talk

) 12:33, 22 May 2015 (UTC)

Yes just to say - whenever I refer to wikipedia discussions outside of wikipedia - on facebook, quora, or my science blog, I am always careful to say that anyone reading what I say there shouldn't join any wikipedia discussion as a result of it. I've now written up what I found as a science blog post here, and I mention this talk page as part of the "personal story" which makes articles more interesting to read. But hopefully in a measured balanced way and I say clearly that nobody should come to this discussion and take part in it as a result of reading the article. I don't expect anyone will as in the past in similar situations nobody ever has. Robert Walker (talk) 13:33, 22 May 2015 (UTC)

Not

WP:SOAP

Not a Soap box

More research being done to prove Morgellons is very real and not delusional (Cornicom Institute) Please note all this information is written by myself with permission from Cornicom Institute as they are doing ongoing studies that involve the public. The purpose is to get to the truth behind this horrible ailment. With thousands upon thousands afflicted worldwide it is becomming very difficult for government health organizations to deny the fact that this many people are NOT DELUSIONAL. Morgellons is very real and very devastating not only to the human population but animals as well. I urge the reader to research the many studies done by Clifford Cornicom at the institute. http://www.cornicominstitute.org Independent study being done at Independent Morgellons Study https://carnicominstitute.website/wp/mrpstatus/ PLEASE NOTE THAT CLIFFORD CORNICOM FOUNDER OF CORNICOM INSTITUTE HAS MADE PRELIMINARY FINDINGS THAT MORGELLONS "IS NOT A DELUSIONAL DISEASE" IT IS VERY REAL AND RESEARCH IS ONGOING. SO FOR THE CDC TO SAY THAT THE ONE STUDY THEY HAD DONE IS CONCLUSIVE IN SAYING THIS IS A DELUSIONAL AILMENT IS CRIMINAL TO THE HUMAN POPULATION!!!THIS AUTHOR HAS SUFFERED FROM THIS AILMENT SINCE 2006, AND I KNOW FROM MY OWN EXPERIENCE AND THOUGHROUGH DOCUMENTATION OF MY OWN THAT THIS DISEASE IS NOT ONLY REAL BUT HAS DEVESTATED MY LIFE. MY PAGE IS HERE; https://www.facebook.com/pages/Morgellons-Disease-and-Other-Very-Real-Gmo-Sickness/106875499412820?ref=hl Morgellons Truth Network (talk) 18:54, 25 June 2015 (UTC)Since the first case of "Morgellons" was brought to the world, there has been a stigma placed on it of "Delusional Parasitosis) This stigma has been in place since day one, however, there is more and more scientific proof that this is by no means a delusional disease. There is great controversy about the CDC's study and since the CDC study has been published, there has been numerous other studies that totally contradict the CDC study. The most notable study being done is by Clifford Cornicom with the Cornicom Institue which can be seen here: https://carnicominstitute.website/legacysite/articles/announcement_files/JourneyIntoTheUnkown.pdf Morgellons, or Unexplained Dermopathy (which ever name you choose) is in fact, a debilitating ailment in which it produces lesions on the skin that can take literally years to heal. There is strange fibers that are deep within the lesion and these vary in size and color. It would seen there are many factors involved with the infection or active phase of the ailment. There is a feeling of crawling sensation over the skin along with stinging. There's also black specs that can be found on skin a clothing. There are many signs and symptoms that are involved with this such as; Morgellons Disease is systemic; affecting all body systems, once an infection is fully established. Initial symptoms often present as skin related, as if afflicted with mites, lice, fleas and 'dandruff' and dry skin - but unresolved after medical treatment. Integumentary system: Itchy scalp and skin Sensation of crawling on/under skin (formication) and in ears (especially nocturnally or after consuming sugar) Insect-like 'bites' and stinging sensations on skin Skin rash, including red areas on cheeks Small ‘blood spots' on skin Burning sensation on skin or feeling of very small pin pricks White flakes, 'spores', 'eggs', granules and 'glitter' from skin pores and hair Fibres coming from skin pores and lesions, of different lengths and colours: (blue, white, transparent, black, red) Fibre balls/bundles coming out of skin pores Black specs coming out of skin pores Skin lesions, sores, pimples or spots - that heal slowly (eg. red spots or scabs on nose & checks) Healed lesions causing scarring or hypopigmentation Mole 'like' spots appearing, raised on skin (Micro-angiomas 0.5 to 3.0 mm in diameter) Skin thinning (shins, back of hands) and unexplained bruising Cellulitis (above major muscle groups) Dark circles under eyes Hair loss on scalp, eye brows, eye lashes Growth of soft, white villous hairs on face and arms Ingrowing hairs and black roots on infected hairs Scalp hair irritating skin when wet and highly static when dry Pitting on nails and fungal infections Cardiovascular system: Irregular/fast heart beat and sudden pain without exertion Circulation & temperature regulation problems (low core temperature) Poor capillary refill, Reynaud's syndrome Endocrinal system: Thyroid dysfunction Hypercalcaemia Weight loss/gain Digestive system Irritable bowel Distended abdomen Malabsorption Colo-rectal discomfort Constipation or loose bowels Rumbling stomach Musculoskeletal system: Stiff neck upon movement and aching shoulders Pain at base of spine around sacrum (pelvis) and coccyx (anus) Inflammed, aching and stiff joints (fingers, elbows, hips, knees) Weakness in wrists Lymphatic & Immune system: Inflamed lymph nodes (eg. under jaw line, arm pits, groin) Immune system disruption Central Nervous system: Numb fingers and/or toes (peripheral neuropathy) Short-term memory loss Racing thoughts Insomnia Brain fog - (eg. problems with finding words) Fatigue and lack of concentration Pressure headaches Urinary system: Kidney ache (can manifest as lower back pain) Bladder weakness Urinary tract infections Eyes, ears, nose and throat: Declining sight, grit feeling, white particles in tear ducts and eye inflammation Declining hearing Loss of balance Heavy staining on teeth/gum interface Gum disease and pain in gums Furrows in tongue Increased saliva Psychological: Depression Increased irritability and decreasing patience Bipolar ADD Morgellons disease shares characteristics with various recognized conditions and may be found in patients with Chronic fatigue syndrome, Lyme disease, Lupus, Fibromyalgia, Irritable bowel syndrome, Gulf War syndrome, Attention-deficit disorder and various skin disorders caused by fungus and bacterial. Morgellons sufferers have thread-like filaments appearing from skin sores and/or unbroken skin, which can be the cause of much discomfort and itching. Unfortunately, Morgellons patients are often given a clinical misdiagnosis of delusional parasitosis or obsessive-compulsive disorder. This is largely due to a lack of detailed observation, and correlation of patient cases. It is thought that a trauma or overload of stress can increase or kick off these symptoms. Indeed, Morgellons seems to progress in a body that has a compromised immune system or state. Many sufferers report an association with being bitten, handling soil, being in close contact with sick humans or animals. The Morgellons Research Foundation (MRF), in the United States initially had over 15,000 registered families. They had found that often more than one family member was affected by Morgellons Disease. They also reported that nurses and teachers were the occupational groups affected the most. Their work and funding has been transferred to the Charles E. Holman Foundation, with research being led by Randy Wymore (Assistant Professor of Pharmacology & Physiology, Oklahoma State University). The page below includes the MRF's case definition, giving more details on symptoms and signs. It also provides details on laboratory tests that can show abnormalities in Morgellons patients: http://www.morgellonsuk.org.uk/support_medical.htm [1] Denise Epke

Mayo Clinic Study

Why is this section here? It's a primary source. I can see how/why it is needed here (because of the misconception and publicity and misunderstanding about exactly where Mayo stands), but we've got a problem when one editor wants to add primary sources about Lyme-- which we reject per MEDRS-- at the same time that we include a Mayo primary study.

I do not have access to all the journal articles; is the Mayo study not covered in a secondary review? SandyGeorgia (Talk) 09:16, 20 May 2015 (UTC)

Shouldn't be and removed it Doc James (talk · contribs · email) 11:45, 20 May 2015 (UTC)

Hmmm. "Walsh, Nancy; Zalman S. Agus, MD (May 16, 2011). "Bugs and Worms in Patients' Heads, Not the Skin" . MedPage Today. Retrieved 16 May 2011." seems to be a secondary source? Guy (Help!) 13:05, 22 May 2015 (UTC)

You are correct, and I missed that page. I raised the question because I believed the Mayo study had been covered in a stronger-- journal-- source, but I don't have journal access; it can probably be cited to a stronger source. SandyGeorgia (Talk) 13:35, 22 May 2015 (UTC)

What the Mayo clinic actually says about Morgellons is quite the opposite of Wikipedia's version. [18] — Preceding unsigned comment added by 50.70.15.157 (talk) 06:43, 29 June 2015 (UTC)

1. ^ (Information from Morgellons UK) (Morgellons Truth Network By: Denise Epke)