Talk:Myalgic encephalomyelitis/chronic fatigue syndrome/Archive 21

Discussion

I much prefer option 1 it basically covers the same thing over two sentence rather than one. And uses simpler language such as "worsening symptoms after physical or mental activity" rather than "post-exertional malaise"

The source defines PEM "Worsening of ME/CFS symptoms after physical or mental activity that would not have caused a problem before illness. This is known as post-exertional malaise (PEM)."[1]

We list symptoms from multiple system and thus do not think we need to also say it is "multi systemic" we also say that it affects the ability to carry out ordinary daily activities and thus no need to also say it is "serious". Both these are clear. Doc James (talk · contribs · email) 14:32, 21 May 2020 (UTC)

I think it's a matter of accuracy rather than preference. The IOM report is literally "redefining an illness" so clearly a change of wording needed. CFS is no longer considered a fatigue disorder or a diagnosis of exclusion, which is a noticeable shift to increase accuracy of diagnosis. Option 1 is closer to the 1990s Fukuda criteria and it's so about fatigue. Having the main systems of orthostatic intolerance and cognitive impairments in the second sentence incorrectly reduces the emphasis on these. That's misleading and doesn't help distinguish the disease from all the other fatiguing illnesses. Long term mild fatigue is clearly excluded when you see the diagnostic criteria. The general population are often fatigued at some point so tend to be unaware that it's a serious condition, or believe it's mostly fatigue, so I think that's why the IOM report calls it "serious" and "multisystem" (my typo was to use multi-systemic). Option 1 isn't clear because the symptom is the substantial reduction caused by the "long-term fatigue" - if someone has long term fatigue without the reduction they might have idiopathic chronic fatigue or another illness causing chronic fatigue, or simply have chronic fatigue from persistently doing too much (think: atheletes over-training) - if they cut back their activities and still have "profound" fatigue that could be CFS. Option 2 is the only one that mentions the reduction in functioning, and by mentioning multiple systems it makes it clearer since almost all well have immune symptoms, endocrine symptoms like chills/sweats, digestive symptoms and/or mitochondria/energy production problems, and multiple types of pain even though these aren't in the main symptoms. The CDC calls it "complex" and "disabling". I suggest a shortened version of Option 3, or directly quoting it. Note also that the Conclusions in the IOM report repeatedly use the words serious, "profound fatigue" (not simply long term but also profound), and "multisystem" (no hyphen). CDC here states 3 main symptoms, plus one of the two optional symptoms. CDC cautions that: "The IOM committee specified that “The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.”" The words "profound fatigue" arts important enough to be in the diagnostic criteria, and only options 2 and 3 include it.

IOM report summary, p5 states:

"RECOMMENDATIONS

The primary message of this report is that ME/CFS is a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is “real.” It is not appropriate to dismiss these patients by saying, “I am chronically fatigued, too.”"

I am unclear what "option three is supposed to refer to? This is mostly about should we have the text over one super long sentence or over three shorter sentences. User:Ward20 thoughts? Doc James (talk · contribs · email) 09:47, 22 May 2020 (UTC)

Doc James, I am pretty clear what all this is supposed to mean: refactoring the article to reflect the belief that CFS is really and only "myalgic encephalomyelitis" despite the lack of convincing pathology to show that it is encephalomyelitis. You know, exactly what the "ME" activists have been trying to do here for owell over a decade. Guy (help!) 10:53, 22 May 2020 (UTC)

user:JzG thoughts on the two versions above? I favor option 1. User:Amousey has put in place option 2 a couple of times. If that is the version Amousey wishes to support we can look to a RfC next I guess. Doc James (talk · contribs · email) 10:55, 22 May 2020 (UTC)

I don't know what happened with the text of Option 3 but I have put it back now. A RfC is premature at this stage

WP:Undue to 3 of the 5 main symptoms, and incorrectly states there is a general decrease in activity - when the diagnostic criteria states that there must be a reduction AND it must be substantial. Amousey (talk

) 11:13, 22 May 2020 (UTC)

Doc James, Option 1 works for me. Guy (help!) 12:36, 22 May 2020 (UTC)

The CDC describes three core symptoms followed by one of two symptoms.[2] The first option includes all 5 just over two sentences rather than 1.

The third sentence "The condition generally limits a person's ability to carry out ordinary daily activities" makes it very clear that the symptoms are substantial.

I see option 2 and 3 as less good. User:Amousey do you want both those in the RfC or just one of them? Doc James (talk · contribs · email) 13:21, 22 May 2020 (UTC)

Not everyone has had the opportunity to read Option 3 - including User:Ward20 - it's only been there a few hours. User:Doc James As I said previously, please do not continue reverting edits while the discussion here is ongoing. The specific issues I have relate to the wording which is substantially different to what is on the CDC and IOM reports: 1. We should be including complex and either "multiple body systems or multisystem given - multiple major success have these in the lead section. Do you have references to justify your removal / omitting of these?

2) "Generally" means typically / normally / in most cases but the criteria say that this is required. Generally is misleading.

3) Editing the link to go to fatigue rather than long-term fatigue is an issue, in medical terms "Chronic" refers to duration, not severity, so that's where the link should go.

4) It is repeatedly described in the lead and summary of the IOM report and the lead of multiple CDC pages as "serious" and the fatigue is described directly as "profound fatigue" meaning extreme fatigue. This should not be buried further down the page in the details or examples. The use of "Chronic" means lasting over 6 months (as opposed to acute). Kindly readup on Idiopathic chronic fatigue eg in the Fukuda criteria (1994) it is a clear exclusion. At present, what is described is closer to idiopathic chronic fatigue or even fibromyalgia.

5) If you wish to highlight tend you think the reader may not be familiar with, we can discuss alternative wording or explanation, but we must not make the mistake of adding in appropriate words like "generally" or omitting very significant easily understood words like serious or extreme.

The IOM report, and it's reception by the CDC have changed things in the consensus of understanding this disease. There has been significant change in the CDC information. Adding to that are the varies ICD-11 commentators and requests. This means all of us need to revisit our prior thoughts and reflect on the new understanding coming through. The Oxford criteria is no longer relevant according to the Pathways to Prevention findings. This same process has happened many times before with CFS, including when the CFS name was introduced by the CDC, and the Fukuda report. Amousey (talk) 17:09, 22 May 2020 (UTC)

I have just now gotten to read over the talk page after working on the article. It appears some of the changes I made sort of fall between option 1 and option 3, but is closer to option 1. I tried to work carefully and conservatively while adhering to the sources given. I am very open to careful and considerate changes to anything I have edited and hope that a

WP:BRD

process will lead to improvement of the article without edit wars or walls of acrimonious text on the talk pages that is difficult to read. So far, in this time period, the editing has been cooperative on this difficult article and I hope it stays that way.

I think there should be more work on the lead to plainly describe the debility the illness often causes. I do think there is a middle ground between some of the wording User:Doc James favors and some of the wording Amousey favors. I also believe that the wording needs to be enclopedic and the lead closely follow references mainly from the CDC, IOM, and NICE guidelines. Ward20 (talk) 19:24, 22 May 2020 (UTC)

Certainly we can discuss more options. Doc James (talk · contribs · email) 08:08, 23 May 2020 (UTC)

I have amended the wording slightly, in particular shortening and simplifying option 2. and including a bullet point version. Option 4 has a first sentence that doesn't mention symptoms. Significant things I noticed from re-reading the (badly laid out) CDC Symptom info 1. Unrefreshing sleep is not there. It is "sleep problems" instead, which is broader. 2. Fatigue is not a symptom - the drop in activity level is the symptom (accompanied by fatigue is part of it) - I had in my mind that it was the other way around. Therefore the drop in activity levels can't go last. The first words of the first core symptom are "greatly lowered" so I have included that. I hope we can move forward with one of these options but am open to other suggestions. Amousey (talk) 00:15, 24 May 2020 (UTC)

I think spliting it into 2 sentences similar to #4 is better. Otherwise too complicated. Yes. Reduced activities with fatigue over 6 months should be first symptom similar to description in #2. Ward20 (talk) 02:02, 24 May 2020 (UTC)

Feel free to edit #4 User:Ward20 Amousey (talk) 18:44, 24 May 2020 (UTC)

I changed the whole 1st paragraph and added the present article wording for reference,

WP:BRD as needed. The first sentence is supported by the CDC page, "What is ME/CFS".[3] The rest is supported by the CDC page, "Symptoms of ME/CFS".[4] I used "diagnosed" instead of "characterized" because characterized implys an understanding of the illness. We don't understand it well, and it is just one prominent definition of diagnosis among 20 or so that are out there. The diagnostic criteria has been changing and will continue to do so until there is a diagnostic test. Then subgroups, etc. There is no reason to give the impression the illness is "characterized". I also used "cognitive dysfunction" instead of "problems with memory or thinking" because I think cognitive and dysfunction are simple enough words, and just as easy to understand. Ward20 (talk

) 21:46, 24 May 2020 (UTC)

I couldn't find your changes so quickly did a lead using 2 sentences as suggested. In case it gets overwritten its this: Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME), is a complex, fatiguing medical condition that causes worsening symptoms after physical or mental activity, a greatly lowered ability to do pre-illness activities and unrefreshing sleep.[10] Difficulty sitting and standing upright or cognitive dysfunction are also present. Amousey (talk) 02:13, 26 May 2020 (UTC)

OK. I edited #4 of your options above, under suggestions. No one has commented on it so far. Ward20 (talk) 03:44, 26 May 2020 (UTC)

Okay will start the RfC soon. I formatted it to 6 options. Doc James (talk · contribs · email) 11:55, 26 May 2020 (UTC) Doc James (talk · contribs · email) 11:48, 26 May 2020 (UTC)

Amousey has returned to Wikipedia after a six year hiatus, and piled in to effectively completely rewrite this article from the "ME and only ME" perspective. He just removed CBT from the treatments based on sources that do not do that. He is cherry-picking from sources to emphasis what he likes, taking out graduated exercise based on a Cochrane report that does not rule out exercise, and so on. I think this needs to stop. And with under 300 edits in total, with this far and away his most edited article, I see this as

Wikipedians are expected to remain

Ad hominen comments or accusations of cherry picking are inappropriate. Amousey (talk

) 20:57, 24 May 2020 (UTC)

Amousey, Wikipedians are also expected not to make massive changes at high speed to stable articles when they have viurtually no other edits to Wikipedia. Especially when those changes have the efffect of completely rewriting an article to a perspective that has been pushed and rejected as fringe for over a decade here. Guy (help!) 14:06, 26 May 2020 (UTC)

Amousey keeps adding a POV lede to the treatment article. You have made some useful changes to the article, so don't jeopardise it by getting yourself blocked. NPOV is fundamental to wikipedia, and if you're going to keep trying to insert a specific POV into an article, you're just wasting everyone's time. Time to have a rethink, and start editing accordingly. Think of this as friendly advice, and it will help us all moving forward. --sciencewatcher (talk) 14:22, 26 May 2020 (UTC)

−

Several editors are making changes besides myself. Changes are necessary when a page becomes so noticeably out of date that it contradicts newer version of exactly the same sources or uses - particularly the CDC, Smith2015 which had an addendum changing conclusions and recommendations in 2016, and the Cochrane 2002 review for exercise therapy which has been updated many times and had a new announcement this week. This is absolutely no policy that I can find that suggests pages should stay how they were when the current status quo changes. I outlined at the top of the talk page evidence of some significant changes since 2016/2017, which have received little comment. The main changes are in fact new sections on APT, counseling, exercise plus altered conclusions by the AHRQ and CDC been updated, and the order has changed. I have posted the new order on this talk page, and have had lengthy discussions with other editors about the lead. I dispute your claim the page was "stable" before - it was regularly being updated. Wikipedia does not allow for new information to be removed in order to put back someone's preferred view. In future please use scientific sources to update the page or if you feel a source is disputed Amousey (talk) 14:34, 26 May 2020 (UTC)

User:Sciencewatcher please clarify what POV this is and provide sources to show that is is a point of view rather than current fact or consensus. The IOM2015 report was partly titled "redefining an illness". That has been accepted by the CDC so their view appears to have changed. Anything which is solely a POV can be shown as such by adding references, so please do this so I can see exactly what you are disputing and what the sources you are using. The illness has been called a "disease" since 1969 by the World Health Organization and the CDC have more recently accepted it as a disease - if that is your point? CDC info on causes clearly point to an underlying disease process as confirmed by the IOM report, and many other reliable sources, which may be why CBT and GET couldn't help - because they do not tackle am underlying disease process and rely on the disputed deconditioning model. I am trying to work collaboratively and find comprises here, but I am unsure on what sources alternate wordings are based on. Amousey (talk) 14:34, 26 May 2020 (UTC)

It's very simple. You keep changing the lede in the treatment article to say there are no treatments, but the article itself still has lots of text saying that CBT and GET are effective. I see you have also done the same to this article. The lede needs to be a summary of the page. You seem to be intent on pushing a POV based on some sources. If the sources disagree then the article needs to reflect that. There is no "disease process" which has been identified, and CDC specifically says "Scientists have not yet identified what causes" it, and list various possible causes. And, no, CBT isn't just about "deconditioning". --sciencewatcher (talk) 14:50, 26 May 2020 (UTC)

Thanks for clarifying. I thought I had updated all the CBT and GET references since the sources for those have updated their recommendations and no longer support it - although that has been disrupted by frequent reverts from others without good cause. If I archive those sections on CBT and GET to the Controversies page, and add a 2 line explanation of each, plus 2 lines explaining where they are / are not used, that would be consistent. What do you think

WP:Undue to treatments that have been abandoned in the last few months, and to the Controversies. I would prefer to expand on what the current treatment recommending are - which are management strategies. We also have a separate treatment page as an alternative place for them. Amousey (talk

) 21:17, 26 May 2020 (UTC)

We do not use press releases for stuff. So trimmed this. Doc James (talk · contribs · email) 11:39, 26 May 2020 (UTC)

"Rintatolimod has been approved for use in people with CFS in Argentina."

"AIM ImmunoTech's Ampligen Receives Clearance from FDA for Exportation to Argentina for the Treatment of Severe Chronic Fatigue Syndrome". www.nasdaq.com. Retrieved 2020-05-26.

I have no problem finding other refs, however this should not have been reverted. Please tag instead, otherwise we each waste time reverting and redoing. It's in no way controversial or disputed that rintatolimod is approved in Argentina. One of the "prove it" or "verify" templates could be added with a reason. Amousey (talk) 21:19, 26 May 2020 (UTC)

Patient groups and patient views can be expressed in medical articles as long as they as clear that it is a view point. This is required to maintain a

Have you got any diffs of this behaviour? -Roxy the elfin dog . wooF 15:24, 26 May 2020 (UTC)

Amousey, you are extremely inexperienced. This is a contentious article and "ME" asdvocacy groups have been attacking it for over a decade trying to reframe CFS as ME-and-only-ME - which is the effect your edits have. At this point I am starting to wonder if you're a member of one of these groups. Guy (help!) 20:37, 26 May 2020 (UTC)

Roxy I am not sure if you are referring to the talk page or edits or both. I'm simply trying to update the page to reflect the CDC website rewrite and the change in treatment recommendations. Talk page - 1 2 3 4 5 6 7 8 9 10

As regards edits, the International Consensus Criteria link was removed, the page is categorized on WP as both neurological and immune and I sourced in the lead that "neurological" was removed from the lead - click ICD-10 or ICD-11 in the footer but I did reference it separately at World Health Organization classification (ICD-10 is cat G Diseases of the nervous system - same category for decades now). After that the lead had medical condition removed without source or valid reason. Obviously it's a physical health condition as multiple source on the page can confirm including the CDC quote on the page. Amousey (talk) 22:09, 26 May 2020 (UTC)

single-purpose advocacy accountss. Guy (help!

) 10:05, 27 May 2020 (UTC)

Really?? I had no idea of the history of the WP page. That's for explaining. So some here might be thinking I'm an editor who got banned before on a sock puppet alias. That would explain a lot. I have come across a few people who only want to use the International Consensus Criteria. That's not a smart move. I'm using the primer as a secondary source because it covers so much. It's not appropriate to use for things like symptoms of the illness because in my view the CDC holds more weight and it's much newer. Not much detail on CDC though. International Consensus has got a summary of major findings and pretty much backs up the CDC on possible causes/triggers. There's very few tiertary sources so it's mostly systematic reviews, government reports, government websites and consensus documents as secondary sources. The names are on the international consensus source there's about 20. A number of them also did the Institute of Medicine report in 2005 on behalf of the US government. Immunologist Nancy Klimas of Nova Southeastern's Neuroimmune research centre, who mostly researches HIV/AIDS, CFS, Gulf War Syndrome, Ronald W. Davis, Lucinda Bateman who does fibromyalgia and CFS research and treatment, a few who have quit the field, and a few medical advisors to patient groups, a few I don't know anything of. It's obvious from the document what's coming from references and what's coming from consensus of opinion. I think it's worth having as an external link at the bottom of the page since it's not controversial among clinicians (the criteria gets ignored, the management and screening tools aren't controversial). One or two of the authors I don't like and don't cite but that's committees for you. I will bear in mind your reasoning. I do think it's unfair to remove a link to it just because the link goes to a patient group. When I Google to get the primer link that's what shows up. It isn't in an open access journal and you can only get the diagnostic criteria part on pubmed - which is the least relevant since nobody uses it. Despite how it's been used before, it is a valid secondary source for a wide range of topics. Is there a standard list of examples of medical websites used for the external links section? Amousey (talk) 14:27, 27 May 2020 (UTC)

I think the sections referencing the CDC need updating to reflect the updated CDC website. The focus on fatigue should be changed to recognize post-exertional malaise as the hallmark symptom rather than fatigue. See sources below

• CDC has rewritten it's CFS website, and removed GET and CBT as recommendations, emphasizes the 2015 Institute of Medicine report, and the Immunological and Neurological causes, de-emphasizes psychological by grouping it with physical stress (meaning some kind of exertion).
• Post-exertional malaise is now consistently being regarded as the hallmark symptom rather than fatigue - those using the Oxford criteria are added PEM as an additional requirement, see CDC, [* IOM report], and here, Chu 2018
• The ICD-11 is now approved and specifically excludes chronic fatigue syndrome from the Mental and behavioral disorders section, classing Post-viral fatigue syndrome, myalgic encephalomyelitis and chronic fatigue syndrome all under the same neurological disease code. No US adaption has been decided on. It is also being listed as an exclusion for the new Bodily Distress Disorder more updates here
• The UK's NICE guidelines review has chosen the name ME/CFS rather than the old name CFS/ME. A huge patient survey commissioned by NICE showed CBT was more often harmful rather than helpful, and GET was shown with very high rates of harm 2019 Oxford Brookes survey
• Systematic review of randomized controlled trials for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) by Kim et al 2020 does not support GET or CBT.
• Assessment of the scientific rigour of randomized controlled trials on the effectiveness of cognitive behavioural therapy and graded exercise therapy for patients with myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review by Aham et al. 2019 is similar - pointing to low quality evidence and prominent bias.
• A number of new research projects announced to study COVID-19 survivors and see if they develop CFS, an outbreak of CFS appears to be expected given that SARS appears to have triggered CFS cases, M.E. Association already have a leaflet on COVID-19 recovery
• Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - Successful drug trial although no control group yet
• First study from the ME/CFS Gene Study at Nova Southeastern University found genetic components mostly affecting neurological, Immune and endocrine systems, which may explain the female gender risk factor
• ME/CFS Big Data Study found that genetic defects in the gene encoding IDO2 may be causing a "metabolic trap" in patients, causing tryptophan to increase excessively but not kynurenine
• The Oxford criteria being recommended for retirement, this is the criteria most heavily focused on fatigue and does not recognize PEM
• Cochrane exercise therapy review rewrite is in early stages
• Several new treatment trials, particularly for Mestinon
• Nanoneedle biomarker study for a blood based biomarker published, based on Canadian Consensus Criteria which includes PEM, found that the blood cells of patients treated differently when under (salt) stress - possibly linked to metabolic trap theory - see Open Medicine Foundation videos on YouTube - a Kynurenine clinical trial just announced for this Amousey (talk) 22:12, 19 May 2020 (UTC)

  Amousey, it's pretty clear that CDC has been lobbied hard by the "ME" community. It's extremely rare for them to adopt a term like "myalgic encephalomyelitis" when, as they state, there is actually no known cause, no diagnostic or pathological test, and no evidence that it is a form of encephalomyelitis. But it's also not a surprise to find treatment guidelines for a diagnosis of exclusion changing over time. They have no clue what causes it, so all treatment is down to statistical analysis of what appears to help empirically. One of the reaosns the "ME" community attacked Simon Wessely so viciously was that he did exactly that, and they did not like the implications of what he found. Guy (help!) 13:03, 20 May 2020 (UTC)

Guy Please remember to WP:Assume good faith. Ad hominen attacks are not welcome and do not help the editing process. Amousey (talk) 17:13, 22 May 2020 (UTC)

• It is beyond baffling that anyone would give a drug like cyclophosphamide to a condition where actual immune involvement has been hypothesised rather than demonstrated. The above litany does not propose a unifying theory for pathophysiology and no clear framework for intervention. There is a huge abundance of very poorly conducted science with small sample groups, unclear case selection criteria, lack of a control group. We should be really careful not to give the impression that this is clear cut. JFW | T@lk 13:26, 20 May 2020 (UTC)

Chronic_fatigue_syndrome#Immunological immune system activation in CFS is documented on the page, although it is a little dated. Immune disregulation is proven, and was also the reason for the recent rituximab trials which ultimately failed for most patients. Patients with ME/CFS who developed cancer had already been given Cyclophosphamide as an adjunct within their cancer treatment, and some had noticeably improved as a result. Cancer is fairly common in people with ME/CFS, it's what killed Jodi Bassett of the Hummingbirds' Foundation. Jen Brea of Unrest got thyroid cancer. The autoimmune hypothesis is a theory - and might only apply to a subset - but immune system symptoms and evidence are well documented - sore throat, lymph nodes swollen or painful, permanent worsening for some people with flu, lots of Interleukin and cytokine abnormalities etc. Amousey (talk

) 23:47, 20 May 2020 (UTC)

• Jfdwolff, how the hell do you do an open label phase 2 trial with no control group? That seems contrary to all sense. Guy (help!) 14:08, 20 May 2020 (UTC)

  Guy Supposed "lobbying" can't interfere with science in such a way. The additional research especially since 2015 - in fact since the release of the PACE trial data has changed the knowledge base about the illness. I don't really see the relevance of the name in terms of edits since I haven't suggested renaming the page, although it is noticeable that recent research continues to emphasize both central nervous system involvement and immunological involvement, with encodrine system involvement also. It was the CDC who invented the name chronic fatigue syndrome in 1988, the original name comes from clinical observations and autopsies etc, reflecting the involvement of the brain, spinal cord and muscles, which is why the World Health Organization used the name and continues to do so. Sophia Mirza's abnormalities find after she died of the illness are one of many clear indicators of the nervous system basis. It is best not to confuse a lack of full understanding of a condition with having enough of an understanding to be able to classify it. As we have seen with COVID-19, we don't know how it works and we don't know why it is so different to SARS but it can still be classified under Infectious diseases. Etiology does not need to be fully known if the main area of the body causing the issue can be identified - in this case the central nervous system. The information from dxrevisionwatch.com recently on the ICD-11 classification has been good for summarizing this. Melvin Ramsay publications too. The DNA studies are showing up specific alleles which are already known to be linked to different parts of the nervous system and immune system in particular.

Jfdwolff Read the study and it will be clearer. Phase I studies weren't needed. And while there was technically no control group it was a crossover trial, so effectively up until the start of the crossover the second group functioned at as control group. The four year follow up is impressive. Amousey (talk) 23:17, 20 May 2020 (UTC)

Amousey, lobbying can and does interfere with science. Consider, for example, NCCIH, which owes its entire existence to special interest lobbying by pseudoscientists. Guy (help!) 08:59, 21 May 2020 (UTC)

I see you choose to respond with another Ad hominen comment. I repeat: be civil. Do not make insinuations about the motivates or health status of other editors. Amousey (talk) 21:31, 26 May 2020 (UTC)

Amousey, I am an admin and I am looking right now at a case of what look like abuse. Guy (help!) 10:10, 27 May 2020 (UTC)

I ceased editing about 24hrs ago and responded to you, User:Doc James too since then. I'm asking again - please link to whatever policy you think I might be breaking. If I need to change how I'm interacting here then where do I get that info? I'm not a sock puppet. I don't know the history of the page. I'm asking how to update the page in light of the changed info. I have already agreed and done some changes that others are happy with, and decided not to pursue some others based on input here. I didn't know that citing one particular source would count against me. I'm editing in good faith. I don't think my input should be ignored if the sources are as good as they are. Amousey (talk) 14:42, 27 May 2020 (UTC)

Update on the pathology of ME/CFS

A widely popular article from JAMA giving an update on findings up to 2019. I found it interesting and a time saver. Amousey (talk) 23:47, 20 May 2020 (UTC)

• Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome

"Viewpoint". That is, an opinion piece. Meanwhile there remains no evidence that CFS is a form of encephalomyelitis. Guy (help!) 09:01, 21 May 2020 (UTC)

Overview of symptoms

I have trimmed the full list of symptoms in the lead and moved some of them to the body of the text. Have also updated the signs and symptoms section in the body to the 2020 CDC reference. Doc James (talk · contribs · email) 06:23, 21 May 2020 (UTC)

Specialty

The specialty refers to what medical specialty people with this condition are generally sent to. CDC is clear that this is generally neurology, rheumatology, and sleep medicine. https://www.cdc.gov/me-cfs/symptoms-diagnosis/diagnosis.html Doc James (talk · contribs · email) 06:25, 21 May 2020 (UTC)

The CDC says "Doctors might refer patients to see a specialist, like a neurologist, rheumatologist, or a sleep specialist, to check for other conditions that can cause similar symptoms. These specialists might find other conditions that could be treated." There's no source anywhere for rheumatology, but many for Infectious diseases specialists. Amousey (talk) 09:15, 21 May 2020 (UTC)

Since CDC is following the IOM report I was able to find specialities listed.

chaper 9 "rheumatology, infectious diseases, neurology" Amousey (talk) 09:21, 21 May 2020 (UTC)

I guess that works. Doc James (talk · contribs · email) 15:03, 21 May 2020 (UTC)

Were does this ref says this

"Symptoms may develop gradually or suddenly.^[1]"

I will update the ref. It's here: IOM report ^{: 158 : 181} Amousey (talk) 17:10, 21 May 2020 (UTC)

https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

We already say this a bit higher so why say it twice "worsened by normal physical or mental activity"? Doc James (talk · contribs · email) 14:24, 21 May 2020 (UTC)

Perhaps we should use the proper term - post-exertional malaise instead. It's the hallmark symptom and is significant because there are great many fatiguing illness but very few trigger symptoms with activity or exertion - this means not only physical activity by mental activity like conversation, reading, kids doing homework. Amousey (talk) 15:53, 21 May 2020 (UTC)

The lead should be written for a general audience and thus try to use more commonly known language. Doc James (talk · contribs · email) 13:19, 22 May 2020 (UTC)

Is this a new routine event? Is this someting that is optional? That information is helpful when trying to update older references and material. Ward20 (talk) 20:49, 27 May 2020 (UTC)

Patient groups and patient views can be expressed in medical articles as long as they as clear that it is a view point. This is required to maintain a

Have you got any diffs of this behaviour? -Roxy the elfin dog . wooF 15:24, 26 May 2020 (UTC)

Amousey, you are extremely inexperienced. This is a contentious article and "ME" asdvocacy groups have been attacking it for over a decade trying to reframe CFS as ME-and-only-ME - which is the effect your edits have. At this point I am starting to wonder if you're a member of one of these groups. Guy (help!) 20:37, 26 May 2020 (UTC)

Roxy I am not sure if you are referring to the talk page or edits or both. I'm simply trying to update the page to reflect the CDC website rewrite and the change in treatment recommendations. Talk page - 1 2 3 4 5 6 7 8 9 10

As regards edits, the International Consensus Criteria link was removed, the page is categorized on WP as both neurological and immune and I sourced in the lead that "neurological" was removed from the lead - click ICD-10 or ICD-11 in the footer but I did reference it separately at World Health Organization classification (ICD-10 is cat G Diseases of the nervous system - same category for decades now). After that the lead had medical condition removed without source or valid reason. Obviously it's a physical health condition as multiple source on the page can confirm including the CDC quote on the page. Amousey (talk) 22:09, 26 May 2020 (UTC)

single-purpose advocacy accountss. Guy (help!

) 10:05, 27 May 2020 (UTC)

Really?? I had no idea of the history of the WP page. That's for explaining. So some here might be thinking I'm an editor who got banned before on a sock puppet alias. That would explain a lot. I have come across a few people who only want to use the International Consensus Criteria. That's not a smart move. I'm using the primer as a secondary source because it covers so much. It's not appropriate to use for things like symptoms of the illness because in my view the CDC holds more weight and it's much newer. Not much detail on CDC though. International Consensus has got a summary of major findings and pretty much backs up the CDC on possible causes/triggers. There's very few tiertary sources so it's mostly systematic reviews, government reports, government websites and consensus documents as secondary sources. The names are on the international consensus source there's about 20. A number of them also did the Institute of Medicine report in 2005 on behalf of the US government. Immunologist Nancy Klimas of Nova Southeastern's Neuroimmune research centre, who mostly researches HIV/AIDS, CFS, Gulf War Syndrome, Ronald W. Davis, Lucinda Bateman who does fibromyalgia and CFS research and treatment, a few who have quit the field, and a few medical advisors to patient groups, a few I don't know anything of. It's obvious from the document what's coming from references and what's coming from consensus of opinion. I think it's worth having as an external link at the bottom of the page since it's not controversial among clinicians (the criteria gets ignored, the management and screening tools aren't controversial). One or two of the authors I don't like and don't cite but that's committees for you. I will bear in mind your reasoning. I do think it's unfair to remove a link to it just because the link goes to a patient group. When I Google to get the primer link that's what shows up. It isn't in an open access journal and you can only get the diagnostic criteria part on pubmed - which is the least relevant since nobody uses it. Despite how it's been used before, it is a valid secondary source for a wide range of topics. Is there a standard list of examples of medical websites used for the external links section? Amousey (talk) 14:27, 27 May 2020 (UTC)

I think the sections referencing the CDC need updating to reflect the updated CDC website. The focus on fatigue should be changed to recognize post-exertional malaise as the hallmark symptom rather than fatigue. See sources below

• CDC has rewritten it's CFS website, and removed GET and CBT as recommendations, emphasizes the 2015 Institute of Medicine report, and the Immunological and Neurological causes, de-emphasizes psychological by grouping it with physical stress (meaning some kind of exertion).
• Post-exertional malaise is now consistently being regarded as the hallmark symptom rather than fatigue - those using the Oxford criteria are added PEM as an additional requirement, see CDC, [* IOM report], and here, Chu 2018
• The ICD-11 is now approved and specifically excludes chronic fatigue syndrome from the Mental and behavioral disorders section, classing Post-viral fatigue syndrome, myalgic encephalomyelitis and chronic fatigue syndrome all under the same neurological disease code. No US adaption has been decided on. It is also being listed as an exclusion for the new Bodily Distress Disorder more updates here
• The UK's NICE guidelines review has chosen the name ME/CFS rather than the old name CFS/ME. A huge patient survey commissioned by NICE showed CBT was more often harmful rather than helpful, and GET was shown with very high rates of harm 2019 Oxford Brookes survey
• Systematic review of randomized controlled trials for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) by Kim et al 2020 does not support GET or CBT.
• Assessment of the scientific rigour of randomized controlled trials on the effectiveness of cognitive behavioural therapy and graded exercise therapy for patients with myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review by Aham et al. 2019 is similar - pointing to low quality evidence and prominent bias.
• A number of new research projects announced to study COVID-19 survivors and see if they develop CFS, an outbreak of CFS appears to be expected given that SARS appears to have triggered CFS cases, M.E. Association already have a leaflet on COVID-19 recovery
• Intravenous Cyclophosphamide in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. An Open-Label Phase II Study - Successful drug trial although no control group yet
• First study from the ME/CFS Gene Study at Nova Southeastern University found genetic components mostly affecting neurological, Immune and endocrine systems, which may explain the female gender risk factor
• ME/CFS Big Data Study found that genetic defects in the gene encoding IDO2 may be causing a "metabolic trap" in patients, causing tryptophan to increase excessively but not kynurenine
• The Oxford criteria being recommended for retirement, this is the criteria most heavily focused on fatigue and does not recognize PEM
• Cochrane exercise therapy review rewrite is in early stages
• Several new treatment trials, particularly for Mestinon
• Nanoneedle biomarker study for a blood based biomarker published, based on Canadian Consensus Criteria which includes PEM, found that the blood cells of patients treated differently when under (salt) stress - possibly linked to metabolic trap theory - see Open Medicine Foundation videos on YouTube - a Kynurenine clinical trial just announced for this Amousey (talk) 22:12, 19 May 2020 (UTC)

  Amousey, it's pretty clear that CDC has been lobbied hard by the "ME" community. It's extremely rare for them to adopt a term like "myalgic encephalomyelitis" when, as they state, there is actually no known cause, no diagnostic or pathological test, and no evidence that it is a form of encephalomyelitis. But it's also not a surprise to find treatment guidelines for a diagnosis of exclusion changing over time. They have no clue what causes it, so all treatment is down to statistical analysis of what appears to help empirically. One of the reaosns the "ME" community attacked Simon Wessely so viciously was that he did exactly that, and they did not like the implications of what he found. Guy (help!) 13:03, 20 May 2020 (UTC)

Guy Please remember to WP:Assume good faith. Ad hominen attacks are not welcome and do not help the editing process. Amousey (talk) 17:13, 22 May 2020 (UTC)

• It is beyond baffling that anyone would give a drug like cyclophosphamide to a condition where actual immune involvement has been hypothesised rather than demonstrated. The above litany does not propose a unifying theory for pathophysiology and no clear framework for intervention. There is a huge abundance of very poorly conducted science with small sample groups, unclear case selection criteria, lack of a control group. We should be really careful not to give the impression that this is clear cut. JFW | T@lk 13:26, 20 May 2020 (UTC)

Chronic_fatigue_syndrome#Immunological immune system activation in CFS is documented on the page, although it is a little dated. Immune disregulation is proven, and was also the reason for the recent rituximab trials which ultimately failed for most patients. Patients with ME/CFS who developed cancer had already been given Cyclophosphamide as an adjunct within their cancer treatment, and some had noticeably improved as a result. Cancer is fairly common in people with ME/CFS, it's what killed Jodi Bassett of the Hummingbirds' Foundation. Jen Brea of Unrest got thyroid cancer. The autoimmune hypothesis is a theory - and might only apply to a subset - but immune system symptoms and evidence are well documented - sore throat, lymph nodes swollen or painful, permanent worsening for some people with flu, lots of Interleukin and cytokine abnormalities etc. Amousey (talk

) 23:47, 20 May 2020 (UTC)

• Jfdwolff, how the hell do you do an open label phase 2 trial with no control group? That seems contrary to all sense. Guy (help!) 14:08, 20 May 2020 (UTC)

  Guy Supposed "lobbying" can't interfere with science in such a way. The additional research especially since 2015 - in fact since the release of the PACE trial data has changed the knowledge base about the illness. I don't really see the relevance of the name in terms of edits since I haven't suggested renaming the page, although it is noticeable that recent research continues to emphasize both central nervous system involvement and immunological involvement, with encodrine system involvement also. It was the CDC who invented the name chronic fatigue syndrome in 1988, the original name comes from clinical observations and autopsies etc, reflecting the involvement of the brain, spinal cord and muscles, which is why the World Health Organization used the name and continues to do so. Sophia Mirza's abnormalities find after she died of the illness are one of many clear indicators of the nervous system basis. It is best not to confuse a lack of full understanding of a condition with having enough of an understanding to be able to classify it. As we have seen with COVID-19, we don't know how it works and we don't know why it is so different to SARS but it can still be classified under Infectious diseases. Etiology does not need to be fully known if the main area of the body causing the issue can be identified - in this case the central nervous system. The information from dxrevisionwatch.com recently on the ICD-11 classification has been good for summarizing this. Melvin Ramsay publications too. The DNA studies are showing up specific alleles which are already known to be linked to different parts of the nervous system and immune system in particular.

Jfdwolff Read the study and it will be clearer. Phase I studies weren't needed. And while there was technically no control group it was a crossover trial, so effectively up until the start of the crossover the second group functioned at as control group. The four year follow up is impressive. Amousey (talk) 23:17, 20 May 2020 (UTC)

Amousey, lobbying can and does interfere with science. Consider, for example, NCCIH, which owes its entire existence to special interest lobbying by pseudoscientists. Guy (help!) 08:59, 21 May 2020 (UTC)

I see you choose to respond with another Ad hominen comment. I repeat: be civil. Do not make insinuations about the motivates or health status of other editors. Amousey (talk) 21:31, 26 May 2020 (UTC)

Amousey, I am an admin and I am looking right now at a case of what look like abuse. Guy (help!) 10:10, 27 May 2020 (UTC)

I ceased editing about 24hrs ago and responded to you, User:Doc James too since then. I'm asking again - please link to whatever policy you think I might be breaking. If I need to change how I'm interacting here then where do I get that info? I'm not a sock puppet. I don't know the history of the page. I'm asking how to update the page in light of the changed info. I have already agreed and done some changes that others are happy with, and decided not to pursue some others based on input here. I didn't know that citing one particular source would count against me. I'm editing in good faith. I don't think my input should be ignored if the sources are as good as they are. Amousey (talk) 14:42, 27 May 2020 (UTC)

Update on the pathology of ME/CFS

A widely popular article from JAMA giving an update on findings up to 2019. I found it interesting and a time saver. Amousey (talk) 23:47, 20 May 2020 (UTC)

• Advances in Understanding the Pathophysiology of Chronic Fatigue Syndrome

"Viewpoint". That is, an opinion piece. Meanwhile there remains no evidence that CFS is a form of encephalomyelitis. Guy (help!) 09:01, 21 May 2020 (UTC)

Overview of symptoms

I have trimmed the full list of symptoms in the lead and moved some of them to the body of the text. Have also updated the signs and symptoms section in the body to the 2020 CDC reference. Doc James (talk · contribs · email) 06:23, 21 May 2020 (UTC)

Specialty

The specialty refers to what medical specialty people with this condition are generally sent to. CDC is clear that this is generally neurology, rheumatology, and sleep medicine. https://www.cdc.gov/me-cfs/symptoms-diagnosis/diagnosis.html Doc James (talk · contribs · email) 06:25, 21 May 2020 (UTC)

The CDC says "Doctors might refer patients to see a specialist, like a neurologist, rheumatologist, or a sleep specialist, to check for other conditions that can cause similar symptoms. These specialists might find other conditions that could be treated." There's no source anywhere for rheumatology, but many for Infectious diseases specialists. Amousey (talk) 09:15, 21 May 2020 (UTC)

Since CDC is following the IOM report I was able to find specialities listed.

chaper 9 "rheumatology, infectious diseases, neurology" Amousey (talk) 09:21, 21 May 2020 (UTC)

I guess that works. Doc James (talk · contribs · email) 15:03, 21 May 2020 (UTC)

Were does this ref says this

"Symptoms may develop gradually or suddenly.^[1]"

I will update the ref. It's here: IOM report ^{: 158 : 181} Amousey (talk) 17:10, 21 May 2020 (UTC)

https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html

We already say this a bit higher so why say it twice "worsened by normal physical or mental activity"? Doc James (talk · contribs · email) 14:24, 21 May 2020 (UTC)

Perhaps we should use the proper term - post-exertional malaise instead. It's the hallmark symptom and is significant because there are great many fatiguing illness but very few trigger symptoms with activity or exertion - this means not only physical activity by mental activity like conversation, reading, kids doing homework. Amousey (talk) 15:53, 21 May 2020 (UTC)

The lead should be written for a general audience and thus try to use more commonly known language. Doc James (talk · contribs · email) 13:19, 22 May 2020 (UTC)

Is this a new routine event? Is this someting that is optional? That information is helpful when trying to update older references and material. Ward20 (talk) 20:49, 27 May 2020 (UTC)

"Evidence suggests that cognitive behavioral therapy (CBT) and a gradual increase in activity suited to individual capacity may be beneficial in some cases.^[2][3] Exercise therapy is probably beneficial for fatigue in the short-term; however, long-term effects, effects on quality of life, and adverse effects are unclear.^[3][4] Some support groups have criticized the use of CBT and graded exercise therapy (GET).^[5]"

Doc James (talk · contribs · email) 11:41, 26 May 2020 (UTC)

May 2020 Cochrane update I referenced on the page stated this had limited relevance to ME/CFS and a new review was needed. CDC and Dutch Health Council both removed their recommendations for this (see Vink2018 ref), and OxfordBrookesSurvey referenced plus Smith2016 both disputed this evidence also. CDC. Both Cochrane 2020 update and Smith 2016 have highlighted use of Oxford criteria is likely to capture people with fatiguing conditions that do not have CFS. Also PACE 2011 (even before the data release) only claimed 22% improved - which is not very much over the typical 10% placebo response expected.

WP:UNDUE must not be given to abandoned treatments that are no longer referred to in the CDC treatments section. Info is better suited to the CFS controversies page. Apologies if not enough info in edits to make this clear. Amousey (talk

) 11:55, 26 May 2020 (UTC)

Can you provide a link to the 2020 Cochrane update of which you speak? Urls are very helpful to figure out what sources you are talking about.

The source listed as Smith2016 https://www.ncbi.nlm.nih.gov/books/NBK379582/ says "Existing treatment studies examining counseling and behavior therapies or graded exercise therapy demonstrate measurable improvements but may not yield improvements in quality of life (QoL). Therefore, these interventions are not a primary treatment strategy and should be used only as a component of multimodal therapy."

So it is included as a treatment.

This is not a suitable source OxfordBrookesSurvey https://www.meassociation.org.uk/2019/04/forward-me-and-oxford-brookes-university-announce-results-of-patient-survey-on-cbt-and-get-in-me-cfs-03-april-2019/

Vink2018 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6176540/ is also not a great source with an impact factor of less than 1.[5] Doc James (talk · contribs · email) 11:57, 26 May 2020 (UTC)

So we are replacing Cochrane reviews and reviews in the Annals of Internal Medicine with advocacy websites and journals that have an impact factor of less than one... Doc James (talk · contribs · email) 12:07, 26 May 2020 (UTC)

Doc James, Clearly Amousey needs to revert that and start discussing edits before making them, given his inexperience. Guy (help!) 20:35, 26 May 2020 (UTC)

@Doc James, sorry I changed the IOM ref to Rosa2018 Vink[6] because there was no text changed and I didn't look for the impact factor. I was looking for a newer review to replace the 2002 ref, and the IOM ref was being used a lot. I will either find a higher impact factor review for the matrial or switch the older refs back. Thanks for catching that. IF about 4.i over two years, if that is still an issue please reply. Ward20 (talk) 21:18, 26 May 2020 (UTC)

Impact factor is less than one on a very large number of journals and does not justify removal of a secondary source. Vink comments on several different issues, and his comments refer directly to the release of the PACE trial data which was the year after the IOM report.

WP:VERIFY

. 21:26, 26 May 2020 (UTC)

@

WP:MEDRS, the highest quality reference normally over-rules a lower quality one. As I recall, Impact Factor, number of cites, and age of the reference all play a part in the quality decision. How to juggle those is sometimes difficult, and contentious edits are best done with consensus on the talk page. Also, frequent edits on an article show up on editor's watch lists talk pages so there will be more interest; yes more POVs too. Any major change to the lead of a controversial article is going to get some pushback. Take the single word complex that was objected to in the first sentence, I think I have seen somewhere between 5-10 newer reviews (including the CDC) state that while I was looking for citations. But it would have been better to list those citations and wording on the talk page first and let people with an alternate POV list their citations too. This article is horribly out of date IMO. When the CDC changed course a few years ago and revamped their website many medical journal article's POVs about the illness were changing. If the article sources are audited I believe there are many CDC pages moved or changed that no longer relate to the material on this article. It is going to take time to bring the article up to date so please be patient, but there has been some progress. As far as the URLs being removed, I think that it is just someone doing what they think is routine maintenance on the references. Should bring that up on the talk page because hunting around for full text URLs, and not having an accessed date is a handicap on this article. Ward20 (talk

) 22:40, 26 May 2020 (UTC)

User:Doc James I'm actually trying to cite the most recent Cochrane statement - Cochrane has changed - check out the crazy history of updates on it. The newest is the one that says the results aren't relevant so they've decided to do a new review. Check the history for the statement, although you can confirm with a quick check on Hilda Bastian's blog. She's been appointed by Cochrane. The Cochrane update is a reference on the actual page... I added a direct quote from it. Amousey (talk) 23:03, 26 May 2020 (UTC) Alternatively look at the current Cochrane exercise review and click history, then you will see the link to the latest Cochrane article which states "limited applicability to ME/CFS". I have also included the Smith2016 reference where they no longer recommend CBT or GET, and the CDC treatment reference which I expect you have already checked. Vink2018 also refers to the Dutch Health Council and CDC dropping both treatments. The status quo has changed. I don't understand why you are skeptical of the CDC or the sources provided. Times change, and the Freedom of Information Act request that released the #PACEtrial data definitely proved the treatments don't work - not really a surprise when the unblinded trial relied fully on subjective measures (questionnaires), after telling patients that the treatments worked in their newsletter and in the CBT and GET they had to go through. PACE trial prior to the data release refused to release the 6 min walking measures, and even with questionnaires and lots of hard selling, only 22% improved and not by much. PACE even lowered the level of illness needed to join the trial to slightly below the value they considered recovered - someone who joined late could get a little worse and still be counted as recovered. Exercise became contentious because the illness is defined by post-exertional malaise - which occurs after mental or physical activity. Having seen your user page today, I urge you to read up all you can on the science of the trial. A smoke screen was put up to detract from it, which is why I told you not to label me as you have done - I only wish to discuss science. The Wessely school is just a handful of influential Brits who've earned millions in funding for doing not a lot. (£5m PACE trial, about £100,000 attempting to not release the anonymous data). The NICE guidelines have been in place since 2007, and apparently people have not recovered, they haven't recovered because the treatments don't work. They are based on a "deconditioning" theory that has been disproved. I'm not a fan of many of the past popular theories but it does appear progress is moving forward. Amousey (talk) 23:03, 26 May 2020 (UTC)

Can you provide a link to the 2020 Cochrane update of which you speak? Is that too much to ask? Doc James (talk · contribs · email) 10:44, 27 May 2020 (UTC)