Talk:Myalgic encephalomyelitis/chronic fatigue syndrome

Research published since 2015 shows a gradual change in direction

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)

JFW It's not baffling: 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."

I will update the ref. It's here: IOM report 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)

First sentences

Option 1a

is a medical condition characterized by long-term fatigue, worsening symptoms after physical or mental activity, and unrefreshing sleep. Difficulty sitting and standing upright or problems with memory or thinking are also present. The condition often limits a person's ability to carry out ordinary daily activities. People's ability to function differs from that before the onset of the disease. Other symptoms may involve numerous body systems and are present in many of those affected.

Option 1b

"is a medical condition characterized by long-term fatigue that limits a person's ability to carry out ordinary daily activities, worsening symptoms after physical or mental activity, and sleep problems. There is also either worsening or symptoms when sitting or standing upright or problems with memory or thinking."

Option 2

"is a complex, multi-system medical condition characterized by an inability to produce enough energy on demand, a greatly lowered ability to do usual activities, extreme long-term fatigue, sleep problems, and either worsening symptoms upon sitting or standing or problems with memory or thinking."

Option 2b

"is a serious, multi-system medical condition characterized by:

• a greatly lowered ability to do usual activities along with extreme, long-term fatigue
• worsening of symptoms after mental or physical activity (e.g. "crashes")
• sleep problems, and
• either worsening symptoms upon sitting or standing or problems with memory or thinking.""

Option 3

is a complex medical condition characterized by extreme long-term fatigue, sleep problems, problems with thinking or memory, worsening symptoms upon sitting or standing, pain, and other symptoms that are made worse by effort of any sort. Chronic fatigue syndrome can severely impair a person's ability to carry out their normal activities.

Option 4

is a complex, frequently long and debilitating, often misunderstood medical illness. It is diagnosed by: a large reduction in a person's functional ability to carry out ordinary daily activities, along with extreme, long-term fatigue, worsening symptoms after physical or mental activity, and unrefreshing or disturbed sleep. Difficulty with sitting and standing or cognitive dysfunction are also present. Other symptoms frequently occur in those affected, and may involve numerous body systems.

References

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 User:JzG. Option 1 is misleading and incorrectly gives 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)

What symptoms should we list in the lead?

The lead is to be a summary, thus IMO listing >15 possible symptoms "Other symptoms may include muscle pain, joint pain without swelling or redness, muscle weakness, shortness of breath, irregular heartbeat, headache, tender lymph nodes in the neck or armpits, recurring sore throat, digestive issues, chills or night sweats, or sensitivities to foods, odors, lights, chemicals, or noise." is excessive.

Can we trim it down to like 8 maybe such as "Other symptoms may include muscle and joint pain, headaches, tender lymph nodes, recurring sore throat, digestive issues, night sweats, or sensitivities to foods, smells, or lights." Doc James (talk · contribs · email) 14:34, 21 May 2020 (UTC)

There are 5 core symptoms, with either cognitive dysfunction and orthostatic intolerance required (doesn't have to be both but is often is both). I have just noticed there is a 4 page IOM report brief, we would be best using those symptoms, although with post-exertional malaise first since it's become the hallmark symptom. The CDC Core symptoms section used the same ones. I suggest using the same order but simplifying the medical terms:

"The disease chronic fatigue syndrome is characterized by profound fatigue, difficulties with thinking and memory, sleep problems, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort."

I think "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, dizziness or other problems when sitting or standing, pain, and other symptoms that are made worse by exertion of any sort."

Beyond that of course are common optional symptoms including sore throat, painful or swollen lymph nodes, endocrine symptoms etc. Amousey (talk) 18:04, 21 May 2020 (UTC)

With sensitivities, when they are mentioned they need to continue to include light and chemical sensitivity. Similarly, chills and night sweats are mentioned together - part of the "flu-like" symptoms caused by the endocrine system and not to be confused with menopause sweats. I agree that 15 symptoms is too many to list at once, so using "complex" and refering to multiple body systems at the start helps clarify that. I'm happy to work out a table layout if this makes it more readable. Amousey (talk) 18:16, 21 May 2020 (UTC)

I agree with Doc James. Irregular heartbeat is although a common symptom, however, a person with ME/CFS may not easily detect it and I have not seen any studies that state it causes widespread difficulties. The description "without swelling or redness" is diagnostic but not terribly impactful. "In the neck or armpits" is likewise too detailed. "Muscle weakness is disputable because some studies have shown only a neurological perception of muscle weakness. I haven't noticed good studies on "shortness of breath" to determine prevalence or pathology. Ward20 (talk) 22:54, 21 May 2020 (UTC)

Without joint swelling or redness is essential to keep in because it rules out the majority of alternative causes of joint pain - they've chosen to keep that detail on the short list because of of significance. I think with the lymph nodes, many different criteria have mentioned that without specifing which lymph nodes so I am fine to leave it out. It would be wrong to leave out irregular heartbeat however. It made the short list of symptoms after they read thousands of research papers.

User:Ward20 I would expect it be in large studies not case studies with only a handful of patients. See PMC6703845, the list of symptoms in the Canadian Consensus Criteria and International Consensus Criteria too. It needs to stay. Heart palpitations are in the this primer. Also bear in mind what the T in POTS stands for... the deaths from heart related problems are one of the three leading causes of deaths in this disease. It's clearly important. Amousey (talk) 23:21, 21 May 2020 (UTC)

I agree "without swelling or redness" should be part of the sign and symptoms diagnostic discussion section, but I believe it is too much detail in the lead where the article is summarizing the symptoms. Irregular heartbeat is not the same as heart failure described in Jason's paper. He hypothesizes several different mechanisms as possible contributors to the heart failure such as; "decreases in circulating blood volume, lower cardiac output, as well as sympathetic transmission to the heart". That said, I would not have a issue keeping it in due to the fact it's mentioned so often in so many secondary sources.Ward20 (talk) 00:11, 22 May 2020 (UTC)

Let's just keep the main 5, and take out/move the "other symptoms" paragraph from the lead section, and put after the main 5 something like:

"although many [#Signs_and_Symptoms other symptoms] typically occur, which affecting multiple body systems".

They can click the link to jump lower if interested. Amousey (talk) 00:36, 22 May 2020 (UTC)

I think that is an excellent idea. Working on it. Ward20 (talk) 01:57, 22 May 2020 (UTC)

The lead is getting repetitive. We say "multisystem" and "affecting numerous body systems". We do not need both in the same paragraph of the lead. Doc James (talk · contribs · email) 13:28, 22 May 2020 (UTC)

Repetitive terms in lead: "multisystem" and "affecting numerous body systems", Fixed now, correct? Ward20 (talk) 01:49, 24 May 2020 (UTC)

Short description

This is out of date. It currently says:

• Medical condition involving extreme fatigue among other symptoms

I think it should say

• Complex disease involving multiple body systems that results in exertion intolerance, extreme fatigue and other symptoms.

"Complex" and "multiple body systems" coming from the CDC description, the use of exertion intolerance from the Systematic Exertion intolerance Disease name. Amousey (talk) 18:11, 21 May 2020 (UTC)

Appears like an improvement to me. Ward20 (talk) 22:57, 21 May 2020 (UTC)

Were does the article say "Medical condition involving extreme fatigue among other symptoms" Doc James (talk · contribs · email) 09:54, 22 May 2020 (UTC)

User:Doc James In the short description template, the single line above the table. Amousey (talk) 10:38, 22 May 2020 (UTC)

Amousey, no thanks - "complex disease" incorporates a number of unproven assumptions. Guy (help!) 10:48, 22 May 2020 (UTC)

Guy it's the primary conclusion of the IOM report, see bottom of page 5. The CDC also consistently uses the term "complex" and the World Health Organization classes it under Diseases, and excludes it from "General signs and symptoms". The name SEID is Systemic Exertion Intolerance Disease Amousey (talk) 11:20, 22 May 2020 (UTC)

Amousey, feel free to show the pathology that shows this is a disease rather than a condition or disorder. Guy (help!) 12:46, 22 May 2020 (UTC)

I know there's a policy about "Not A Forum," but chances are you won't be hearing from me much. I just got to a point where I had to mention something about statements like this. I'm not completely up on WP policy to the point of which one supersedes the other, but this struck me as something caught somewhere in the truth/verifiability vortex. You're asking him to 'show pathology' when what he's doing is citing verifiable sources that meet MEDRS. Confusing at best. Moreover, and I don't mean to pick on Guy here, but further up the page he laments the current cluster of edits as a manifestation of an activist agenda. What does that have to do with the reliability of sources such as the CDC and the Institute of Medicine? It sort of reminds me of a few years ago when a now self-banished editor vetoed an edit from a NIH publication because he claimed it didn't meet MEDRS. It was published in the Annals of Internal Medicine (there were editorials alongside actual studies, but the edit was about one of the actual studies) but didn't meet MEDRS? It's sort of difficult to accept that there's only been a one-way agenda to attempt to keep the content of this article neutral over the years. But when it comes to this topic there can be a real lack of common sense, on both sides, but...geez. Guy, you're now claiming that the changes we've seen in this area over the past few years have anything to do with activist lobbying of the CDC? Seriously? They consistently drew criticism from patient lobbies for decades, but now all of a sudden they're going in a direction you find unscientific/inaccurate because of activist pressure? If you haven't been paying attention, it's nearly five years since qualified professionals started to take a good, long, hard look at PACE (perhaps because, although it would constitute OR here, there were, apparently, people who wondered how you treat an intolerance to exertion resulting in relapse, with graduated exercise). That, I believe you'll find, is a large part of why this is happening, with the other being the large volume of research published in recent years that conflicts with prior guidance about ME/CFS. Look, the CFS article you created on RationalWiki is quite revealing: you're hardly alone in this, but for a lot of medical science, CFS is characterized mostly by what we know about patient activism, but little about the illness itself. Now we don't have convincing pathology or a number of other essential components here, yet the IOM said we need to classify this as a disease. The CDC has adopted their criteria and apparently many of the recommendations. You can't dismiss that because it conflicts with your previously held views, but you knew that. Did you ever consider that the activists might have been correct? Okay, enough, I apologize for the soapboxing, but I've followed this article for over a decade and read the Talk archives, and in spite of whatever stupidity or pigheadedness from this or that 'activist,' it's simply maddening at times. I know this is against policy, I won't do it again, I promise, apologies. But I had to get that off my chest. NeurastheniaMilkshake (talk) 04:43, 23 May 2020 (UTC)

Thanks for your comments NeurastheniaMilkshake. Guy sources for the disease: IOM report including the SEID name - Systemic Exercise Intolerance Disease, the WHO classification [https://icd.who.int/browse10/2016/en#/G93 — Preceding unsigned comment added by Amousey (talk • contribs) 15:51, 24 May 2020 (UTC)

Cochrane (2019) embargoed

The ref named Lar2019 is embargoed - see here, not released until October 2020, but it's used in a number of places even with a direct quote. I assume this is a mistake and the reference refers to one of the previous versions of this review. If someone could figure out which that would be helpful. At present, a rewrite is ongoing due to it failing to meet the Cochrane requirements - so we can't rely on its accuracy as we normally would. I think we should look to other systematic reviews on this. The latest amendment was May 21, 2020. It now points to this update stating "...It now places more emphasis on the limited applicability of the evidence to definitions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) used in the included studies, the long-term effects of exercise on symptoms of fatigue, and acknowledges the limitations of the evidence about harms that may occur." The May 21st Cochrane Review now states:

"Exercise therapy may make little or no difference to fatigue at end of treatment (MD 0.20, 95% Cl -1.49to 1.89; 1 study, 298 participants; low-certainty evidence), or at long-term follow-up (SMD 0.07,95% Cl -0.13 to 0.28; 2 studies, 351 participants; moderate-certainty evidence).

We are uncertain about the risk of serious adverse reactions because the certainty of the evidence is very low (RR 0.67,95% Cl 0.11 to 3.96; 1 study, 321 participants).

The available evidence suggests that there may be little or no difference between exercise therapy and CBT in physical functioning or sleep (low-certainty evidence) and probably little or no difference in the effect on depression (moderate-certainty evidence). We are uncertain if exercise therapy compared to CBT improves quality of life or reduces pain because the evidence is of very low certainty."

— Preceding unsigned comment added by Amousey (talk • contribs) 00:30, 22 May 2020 (UTC)

Taking this into account, I don't think graded exercise therapy should be a treatment in the summary box - and the CDC website confirms it isn't an approved treatment. The CDC states "There is no cure or approved treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, some symptoms can be treated or managed." I think perhaps activity management (pacing) should be added based on the CDC info, plus this huge survey conducted for NICE in the UK. In brief the survey showed:

• Graded exercise therapy or GET with CBT made most people worse
• CBT didn't help or worsen most people, and people were more likely to get worse than better with it
• CBT only improved physical health for 16% of patients, but mental health improved for a large number - suggesting this can't be a primary treatment but may be helpful for those with mental health issues in addition to chronic fatigue syndrome (CFS doesn't have any any mental health symptoms itself but as with other Chronic illnesses rates of depression are higher than in healthy people).
  

• Pacing (ie activity management) has some evidence from many different patient surveys, plus the Consensus pmid 22181560 on it by Goudsmit, Jason and Wallmam (2012). Amousey (talk) 00:02, 22 May 2020 (UTC)

I think this should be handled with care. I am not sure it requires a substantial change in the lead at this time because appropriate caveats about GET were put in a while ago. When the revised Cochrane review comes out in October and the NICE guidance for CFS/ME comes out in December there should be better guidence about GET. It would be better to work on consensus in GET section first and it will be easier to determine how to describe GET in the lead.

About Pace. The CDC is recommending it and I just reviewed the NICE Clinical guideline.[5] Although they say at 1.4.2.7 "there is insufficient research evidence on the benefits or harm of pacing", at 1.7.2.3 they do recommend pacing for managing a setback/relapse. So, I agree that Pacing should probably be elevated into the lead as a recommended therapy. The survey designed by a steering group of Forward ME members, implemented by others, and forwared to NICE is interesting, but NICE will have to report on it before the acticle should give it any WP:WEIGHT. Ward20 (talk) 01:27, 22 May 2020 (UTC)

Agree with User:Ward20, we should wait for these guidelines / reviews to be published. Doc James (talk · contribs · email) 09:52, 22 May 2020 (UTC)

User:Doc James You agree with User:Ward20 on elevating pacing to the top box, but on not referencing the survey until NICE review it? The NICE guidelines are under review, partly because they rely so heavily on a contested exercise review by Cochrane which Cochrane has updated a number of times since the 2007 guidelines were published - including changing the Conclusions. In the top box, perhaps the wording for treatment could be "symptomatic; pacing is recommended for post-exertional malaise". Source: Amousey (talk) 11:43, 22 May 2020 (UTC)

We currently say "gradual increase in activity" which I think is fine in the infobox. Doc James (talk · contribs · email) 11:58, 22 May 2020 (UTC)

What references to you have to support that User:Doc James? I have given substantial references against it. Gradual increases are the definition of graded exercise therapy (GET involves increase in any activity not simply "exercise" - increasing the length of time spent on schoolwork is typical for GET in children). "Activity management" would be ok. CDC does not mention "gradual increase".Amousey (talk) 17:25, 22 May 2020 (UTC)

I don't think that gradual increase in activity, describes pacing properly. The CDC defines pacing similar to staying within individual limits for mental and physical activity.[6] Ward20 (talk) 19:57, 22 May 2020 (UTC)

The one source says "Exercise therapy probably has a positive effect on fatigue in adults with CFS compared to usual care or passive therapies."[7]

The other says "graded exercise therapy suggest benefit for some patients meeting case definitions for CFS"[8]

Doc James (talk · contribs · email) 09:35, 23 May 2020 (UTC)

Not saying that graded exercise therapy is not supported by reliable sources or that it should be changed in the article. I'm saying that pacing is a separate strategy that is recommended by CDC and NICE (see above) in order to prevent relapses from exertion. These therapies are not mutually exclusive. A gradual increase in activity is fine if it stays within the energy envelope of an individual so that it does not induce a severe bout of PEM. Since it is recommended by at least the two guidelines I think it should be mentioned in the lead and infobox. The Pacing material in the body needs updating though. Maybe after that there will be a consensus (or not) for wording in the lead. Ward20 (talk) 10:12, 23 May 2020 (UTC)

What wording do you propose? Would be good to describe pacing therapy in common English. Not sure how to do so. Doc James (talk · contribs · email) 08:01, 24 May 2020 (UTC)

(Out) Well I still need to finish the article Pacing section, probably based on the second and third paragraphs of the Treatment PEM section of the CDC page.[9] Avoiding severe PEM during the initial illness onset is very important. ("Prominent risk factors that predict progression are the severity of the symptoms at the time of onset, the standard of early management of the disease,...poor control over the symptoms have been associated with worse outcomes".)[10]

But my thinking for the lead wording is something similar to: Activity management may help avoid worsening of symptoms caused by the exertion of doing routine tasks. Ward20 (talk) 09:54, 24 May 2020 (UTC)

Simply "pacing (activity management)" added to "symptomatic". Although we could put "symptomatic e.g. pain medication" since the is extensive evidence for that treating the pain symptom only. User:Doc James to avoid confusion with the Adaptive Pacing Therapy that the PACE trial tried and found not effective (see my new section on this). To be honest shocked to see no page on pacing on Wikipedia, despite the huge one in spoon theory (which is a way to understand / explain / use pacing). BTW note the Oct 2019 update from Cochrane about the results having limited relevance to ME/CFS. Amousey (talk) 15:58, 24 May 2020 (UTC)

Something is wrong with citation ref name=Lar2019. The 2020 version can be accessed,[11] but I don't know which version the article is using so if someone could help... Ward20 (talk) 09:51, 25 May 2020 (UTC)

Looks like User:Amousey fixed it. Thanks. Ward20 (talk) 01:53, 26 May 2020 (UTC)

Next time just revert as many times as needed. It was a nightmare to fix. Amousey (talk) 01:58, 26 May 2020 (UTC)

Yes I found out it was a bugger and couldn't fix it. I wasn't editing anything in that section so I had no idea what to revert and didn't want to take out anyone's hard work. Ward20 (talk) 02:07, 26 May 2020 (UTC)

References

Free 1hr CPD module

I had this flagged up to me recently, 1hr free online training on CFS, with CPD credits

• https://www.studyprn.com/p/chronic-fatigue-syndrome

I ran through it the other day and noticed some very good referencing and explanations. I thought it might interest you. If you don't assess patients that option can be left blank. Amousey (talk) 00:07, 22 May 2020 (UTC)

We do not generally link CME links within Wikipedia articles. Doc James (talk · contribs · email) 09:49, 22 May 2020 (UTC)

I wasn't planning to, simply posting here for editors interested in some free training resources. I presume some professionals are editors here. User:Doc James Amousey (talk) 16:00, 24 May 2020 (UTC)

This text failed verification

Onset was listed as "Any age" with this as the reference https://www.cdc.gov/me-cfs/index.html

I am not seeing that this page supports? Doc James (talk · contribs · email) 13:34, 22 May 2020 (UTC)

I will add the reference. User:Doc James "ME/CFS is often thought of as a problem in adults, but children (both adolescents and younger children) can also get ME/CFS." CDC - children. Previously stating only ages 40-60 I felt was misleading, given the number of pediatric primers and the fact that I have never seen any reference to a maximum age or that pensioners can't get it. There are some references showing it is the main source of school absence. Amousey (talk) 16:04, 24 May 2020 (UTC)

That is not "any age". Best to list the most common age in the infobox as that is what the line indicates. Doc James (talk · contribs · email) 05:32, 25 May 2020 (UTC)

Not disputing what should or shouldn't go in the infobox, but Risk Factors does state "any age" based on the CDC epidemiology page that states "anyone can get ME/CFS".[12] Does that support "any age" in Risk factors in your opinion? Ward20 (talk) 06:53, 25 May 2020 (UTC)

Yes agree "but can occur at other ages including in children" is supported. Moved next to the usual age in the lead. Doc James (talk · contribs · email) 08:52, 25 May 2020 (UTC)

Risk factors

User:Ward20 I can see you editing this at the moment, so posting risk factors here rather than risking an edit conflict.

• Female gender
• Viruses (Epstein-Barr, Ross River Virus, etc)
• Nonviral infections
• Genetic predisposition
• Major injury or anaesthetic
• Bodily response to severe stress
• Exposure to toxins
• Vaccinations

Is it worth mentioning SARS or flu with the other viruses (SARS CFS outbreak in Hong Kong - Lam 2009)? Amousey (talk) 23:32, 22 May 2020 (UTC)

OK thank, I have a bit more to do there to find reliable sources for some material cited to the CDC where the page was removed. Then I will come back here and write when I am done for the day. All good points on the risk factors but make sure that the information can be cited from well known journal and is a review and just not a primary study. Makes it much easier to justify the material. Ward20 (talk) 23:51, 22 May 2020 (UTC)

Done with risk factors for now. Concering the recent edits: I believe ("brain fog") is too detailed, and too much jargon for the lead. biological, genetic, infectious, and psychological was better wording than what is there now, as it was concise and covered all the hypotheses, physical or psychological stress affecting body chemistry is the same as biological but just more words. The Suggested diagnostic tools section is nice but these articles don't normally present this type of information. See WP:NOTMANUAL. Ward20 (talk) 01:23, 23 May 2020 (UTC)

I've updated the wording User:Ward20 and added references. It can also be any virus as a risk factor. The CDC's physical or psychological stress affecting body chemistry is different to biological but an example of biological so I guess there's some duplication, it's referring to physical trauma (major accident, surgery) or overwhelming stress (new CDC wording that replaces psychological) - this is coming from the CDC page. The IOM report only says "The cause of ME/CFS remains unknown, although in many cases, symptoms may have been triggered by an infection or other prodromal event, such as "immunization, anesthetics, physical trauma, exposure to environmental pollutants, chemicals and heavy metals, and rarely blood transfusions" (Carruthers and van de Sande, 2005, p. 1)." p1. . Any of the primers or clinician consensus documents in the external sources also make good secondary sources. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6370741/ Chu 2019 is a major study of onset factors. Amousey (talk) 19:33, 24 May 2020 (UTC)

Top box info

Prevention

For the top box, I suggest adding "Early rest". Many refs for this. Amousey (talk) 23:32, 22 May 2020 (UTC)

Early rest prevents CFS? Please provide a suitable reference. Doc James (talk · contribs · email) 09:36, 23 May 2020 (UTC)

Closest I've found in reviews are "risk factors:..the standard of early management of the disease"[13], and "The standard of early management of the illness (e.g. late diagnosis or overexertion in the early stages of the illness are likely to lead to deterioration)"[14] Ward20 (talk) 01:24, 24 May 2020 (UTC)

Will do the refs tomorrow. If I remember correctly it's in the first 6 months (the hypersomnia stage). Amousey (talk) 01:39, 24 May 2020 (UTC)

Hypothetically you can't be diagnosed until 6 months. Ward20 (talk) 06:56, 25 May 2020 (UTC)

Yes User:Ward20 which means if a particular event happens, there is up to 6 months for prevention. I have about 5 sources for this but none come directly from studies comparing early rest with controls. I am not sure it's worth discussing with more important issues unresolved. Would 5 well known clinicians or patient charities be worth considering? Amousey (talk) 21:09, 26 May 2020 (UTC)

Comorbidities

For the top box, IOM p223 lists some and refers to the ICC and CCC.

"...including fibromyalgia, myofascial pain syndrome, temporomandibular joint syndrome, irritable bowel syndrome, interstitial cystitis, irritable bladder syndrome, Raynaud's phenomenon, prolapsed mitral valve, depression, migraine, allergies, multiple chemical sensitivities, Sicca syndrome, obstructive or central sleep apnea, and reactive depression or anxiety." p223 Amousey (talk) 23:32, 22 May 2020 (UTC)

Can go in the body. There is not parameter in the infobox for comorbidities. Doc James (talk · contribs · email) 09:37, 23 May 2020 (UTC)

User:Ward20 I noticed you are working on this at the moment. Can you edit the chemical sensitives you added to be multiple chemical sensitivity. Fairly sure we should have POTS in this list of comorbidities - p57 of IOM report suggests a subgroup may exist with POTS. Amousey (talk) 20:17, 30 May 2020 (UTC)

Thanks. I'll look at the other Comorbidities. I think stick with the source that says chemical sensitivity. Ward20 (talk) 20:59, 30 May 2020 (UTC)

Prognosis

Children and adolescents have a better prognosis than adults. Only around 5% of adults fully recover, although most adults improve within the first 5 years of illness. Early diagnosis is associated with a better prognosis. Onset after severe viral illness is associated with severe ME/CFS. Amousey (talk) 23:32, 22 May 2020 (UTC)

I am not sure why this is posted here? Are you suggesting add this and if so based on what reference? The infobox is for short point form content not prose.Doc James (talk · contribs · email) 09:38, 23 May 2020 (UTC)

Complications/consequences

Reactive depression or anxiety (IOM report p223), long term disability, unemployment, higher suicide risk, developing fibromyalgia or POTS. Amousey (talk) 23:32, 22 May 2020 (UTC)

'PACE trial' edit [15]

Using this space to park an edit by Starchify that is misplaced. The PACE trial was about proving CBT and GET effective. Also, blogs and letters are not sufficient references for WP:MEDRS.

The study that popularised Pacing, commonly referred to as the 'PACE trial', has been a cause for much controversy amongst both patients and practitioners, so much so that it even caused the National Institutes of Health (NIH) to recommend the Oxford criteria, which is used to diagnose Chronic fatigue syndrome, and which was used by the PACE trial, be retired. Other criticisms of the study include changes in criteria of how patients' impairment from CFS was changed part way through the study, subjectivity within the study's measures, apparent conflicts of interest, lack of informed consent, possible influencing of patients' self-reported outcomes within the study, and possible undisclosed side effects of the study.

Ward20 (talk) 03:53, 23 May 2020 (UTC)

Wholesale changes need to stop.

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 WP:RGW. Guy (help!) 20:07, 24 May 2020 (UTC)

Wikipedians are expected to remain WP:CIVIL. If there are changes where you cannot verify the source please mark them as such or used citation needed. Wikipedia is a work in progress and there is no justification for freezing a page because you do not like the scientific advances. The Cochrane Review was updated this week with an announcement and over a dozen changes have been made since it was first published in 2002. The CDC has rewritten it's information so parts of the page were no longer correct. The CBT / GET amendments were discussed first on the talk page, as are the other top box comments although there is no requirement for editors to discuss the top box changes in advance. I am willing to read references that you cite but so far you have not been providing them. Guy. My pronouns are they / them (singular they). 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 User:Sciencewatcher? I have been thinking about the size of article giving 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)

Should Risk factors be a subset under Epidemiology?

Otherwise there is going to be a lot of duplication of material. There already is duplication since the sections are now separate. Ward20 (talk) 07:02, 25 May 2020 (UTC)

References

Need better ref

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)

Why was this removed?

"Evidence suggests that cognitive behavioral therapy (CBT) and a gradual increase in activity suited to individual capacity may be beneficial in some cases. 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. Some support groups have criticized the use of CBT and graded exercise therapy (GET)."

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.[16] 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[17] 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. User:Ward20 Please check WP:REF and be aware that several editors here are inappropriately deleting any reference they don't like - and sometimes even the urls are removed but not the reference. This is an example of disputing genuine editing in an attempt to misrepresent points and exclude people like Vink - a person who has a great deal to add to the research. There are set requirements for adding sources, if your source meets them out should never be removed. Issues with accuracy or being unable to verify content must be tagged as having issues instead of being removed, as it explains in WP:REF and WP:VERIFY. 21:26, 26 May 2020 (UTC)

@Amousey. Well I think that the science will have to slug it out, but here on Wikipedia, with 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)

References

Is there a way to link directly to a reference from the page? Like a bookmark link or something? [[[User:Doc James]] I added Cochrane announcement and there and put it right after Lar2019, and included a direct quote. But here it is:

"<ref name=Coch2019Oct2>{{Cite web|title=Publication of Cochrane Review: 'Exercise therapy for chronic fatigue syndrome'|url=https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome|last=Cochrane|authorlink=Cochrane (organisation)|date=21 May 2020|website=www.cochrane.org|language=en|url-status=live|archive-url=|archive-date=|access-date=2020-05-24|quote=It now places more emphasis on the limited applicability of the evidence to definitions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) used in the included studies, the long-term effects of exercise on symptoms of fatigue, and acknowledges the limitations of the evidence about harms that may occur.</ref><!-- Quote = It now places more emphasis on the limited applicability of the evidence to definitions of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) used in the included studies, the long-term effects of exercise on symptoms of fatigue, and acknowledges the limitations of the evidence about harms that may occur... This amended review is still based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s.

I also provided a Vink2018 as a reference purely because he mentioned that the Dutch Health Council AND CDC AND ARHQ both removed the treatments. There's not many secondary sources referring to what the Dutch Health Council do written in English. (Dutch and British studies are the majority of CBT and GET research). He also mentions the AHRQ 2016 Addendum (I also cited it on the page) which changes the 2015 conclusion - in source mode ref Smith2016 contradicts Smith2015. I want Vink 2018 to stay because the other sources don't comment on all 3 changes like he does. Vink 2018:

Two American government agencies, the CDC (2017) and the AHRQ (Smith et al., 2016), have recently removed (CDC) and downgraded (AHRQ) their recommendations for CBT and GET, because there is insufficient evidence that GET is effective. The Dutch Health Council (2018) has removed its recommendation for GET in March 2018 for the same reason. Vink2018 source

Going back further, the AHRQ (major US gov funded review) initially recommended GET and GET - then the PACE trial data got released and anyone could analyze it independently, and the PACE results fell apart. AHRQ July 2016 Addendum:

p1-8 only ref Smith2016 on the page.

2017 ? CDC rewrites their website and treatments no longer mention GET or CBT. But WP has them in the top box, and has them as the top headings for treatments. So the info is wrong and out of date. I've cited the CDC link where you can see there's no mention of either treatments. The general counseling and exercise advice (stretching etc) I put as subheadings in management. Amousey (talk) 13:28, 27 May 2020 (UTC)

User:Amousey Lets focus on the 2020 Cochrane review first. So the link you are saying is the 2020 review is this? https://www.cochrane.org/news/publication-cochrane-review-exercise-therapy-chronic-fatigue-syndrome

Which is in fact a October 2, 2019 press release for this 2019 review https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full which was already in the article prior to your edits... Doc James (talk · contribs · email) 08:42, 28 May 2020 (UTC)

User:Doc JamesI have just had a look at this and have come to the conclusion there is no 2020 Cochrane review published. As I underderstand it, the October 2, 2019 press release[18] quoted in bold above by User:Amousey has already been incorporated in the Lar2019 reference that was current in User:Roxy the dog's version at 18:05, 13 May 2020[19]. So I believe you are correct above. While looking at version at 18:05, 13 May 2020 I saw the reference Lar2019 used 5 times, and the material it supported was very appropriate. I may have helped with some of that too. However, I checked one CDC ref in that section and found it no longer applied. Ward20 (talk) 10:48, 28 May 2020 (UTC)

Management and treatments headings

Previously the Exercise therapy heading only referred to GET and not to exercise advice from CDC, and no counseling section was available for counseling that did not involve CBT aimed at a specific model of CFS. Headings have now been added for these factors, and CBT, GET and APT have been moved under therapies since they are not management strategies. Medication used for symptom management and other CDC recommendations may need additional headings. Current structure as below.

• 5 Management

Pacing above refers to activity management pacing, not pacing as a treatment (not APT). Note that non-CBT counseling methods have also been used in CFS as a management strategy. Rintatolimod while not approved should probably have a higher level heading eg in Therapies since there is some evidence, although not for all patients. Isn't there a program now to access it for CFS on compassionate grounds? Amousey (talk) 11:46, 26 May 2020 (UTC)

Inappropriate use of the term "activist" and deletion all patient views

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 WP:NPOV. The ad hoc removal of links to academic sources under the justification "activist" is entirely inappropriate - this prevents readers and other editors verifying sources and academic sources like the International Consensus Criteria do not have a justification for outright removal. They are clearly compliant with WP:EL. Similarly, links to a patient group's website or document when used to support the view of that patient group are important to maintain balance. I note the repeated use of "activist" in a disparaging way on edit history and previously on this talk page. CFS is a stigmatized illness and it is not acceptable or WP:CIVIL to attempt to use an illness status as justification for discrediting or deleting content. Please consider whether your wording is civil and whether you are following policies set out and agreed on WP. Attempting to remove all links from specific sources simplify because you dislike those sources cannot be justified. Judgemental comments about particular patient groups do not belong on WP. Similarly, deleting sources instead of marking them as questionable is not what should happen and risks further biasing the page towards a specific point of view. It is much easier to stick to science and the policies on WP. Guy Tagging User:Doc James here re: removal of sources instead of marking them up appropriately to give time for them to be sorted. Amousey (talk) 15:22, 26 May 2020 (UTC)

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)

Amousey, I am interested in who decided this was the "international consensus", because it's been pushed here before by earlier 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)

Background on CFS and why CDC changes etc

Extended content

Indoleamine. Tryptophan / Kynurenine pathway. GRADE framework. HPG axis (not HPA) - neuroendocrine system. Analyzing genes from patients and finding links to autoimmune genes, autoimmune family risk factors, IDO2 gene abnormalities interfering with the metabolism - a gene (enzyme) not properly understood. So will get into the background and I hope some of you skeptics find time to check it out. Especially Guy and User:Sciencewatcher since as far as I can tell you don't have much background in the topic. But I figure you like science. Firstly, Whitney Dafoe. His Dad has a noble prize for gene research. His mom's a psychologist. Both are well past retirement age. Neither can help Whitney get well. Whitney Dafoe used to be really active, keen photographer, traveled a lot, Buddhist. His sister tweets for him because he can't use a screen, can't type, can't speak, can't digest food. His body is almost totally failed and he's been this sick for years. He's got a PEG (?) tube in his stomach and every few months manages some gestures that pass as communication. Can't even listen to music. He's paralysed and in agony most of the day every day. If anyone could figure it out you'd think a psychologist and an internationally famous scientist would have done so by now - if it was anything as simple and obvious as Cognitive-behavioral therapy and gentle exercise. But it just doesn't work. Ronald Davis, Whitney's Dad has used nanotechnology to produce a new method of doing blood tests, and it's testing mitochondria under "Stress" (salt stress). The video is on YouTube but he's got 19 out of 20 patients correctly diagnosed with a blood test for the first time ever - including his son Whitney. The test proves mitochondria dysfunction, which was already known about but only to a limited degree - metabolism being part of the endocrine system, but obviously test needs further work to mass produce the equipment and refine the test. He's got a tech grant for applying to other illnesses too. It's in a journal which has an impact factor of something like 17 I think. Open access. Compare that with the disputed Cognitive behavioral model of CFS - Wessely and Harvey or the simply later "improvement" Vercoulen 1988 - so simple a child could draw it, and apply it... which is alarming since it has been tested on children. Unfortunately lots of "woo" gets marketed to patients including children. The Lightning Process (caused a suicide), "rewire your brain" with these simple online videos for ££££ again no evidence. Gupta program. Banned again for false advertising. You would think CBT would be better - but how can it help the immune system? Metabolism and the endocrine system? So, originally M.E./Post viral fatigue or whatever the old name was wasn't understood at all. But then most things weren't - "hysteria" was thought to be caused by a womb "wandering" around someone's body. Cholera was blamed on the air (miasma) not a water supply. Etc. But they did notice that sometimes there would be disease outbreaks and a bunch of people connected in some way would get sick, exhausted, maybe feverish, some got temporarily paralysed but it wasn't Polio. One of the big outbreaks being at Royal Free Hospital in London, mostly affecting (female) nurses. It got taken seriously, they thought it was physical. Some got better, most stayed sick. Other outbreaks happened. They couldn't link it to food poisoning. It didn't seem contagious. Different patients, different countries. Almost always described as physical illness only. (I am not sure why - old reports don't have much detail.) Some people got sick in the same way when there weren't outbreaks. Still nobody really sure but often seemed to follow symptoms of a virus. Sometimes just seemed random. You can Google list of outbreaks - mostly Europe and US. 1969 Got put in the World Health Organization classification (I think based on autopsies) - under central nervous system diseases. Still there now. 1978? Beard and McEvery came along. Didn't bother examining patients. Decided that a bunch of sick people (mostly female) and nothing obvious = mass hysteria (somatization). Not unexpected. Modern science didn't exist. No proper Epidemiology. No RCTs. Local doctors like Dowsett and Melvin Ramsay get ignored - even though they've probably known the patients since they were kids. They probably have a good idea who is lazy, who gets lethargic often, who gets a headache when distressed (somatization). So these 2 schools of thought, with both being British. Lots more outbreaks. Lots more disease names. Abortive poliomyelitis. Icelandic disease. Etc etc. The patients don't usually recover so nobody is really that interested. It's probably a case of some having somatization (physical symptoms with psychological causes), some having undiagnosed fatiguing illness, some having what is now CFS or ME or Post-viral fatigue syndrome. Some outbreaks are in the US including one at Lake Tahoe, a touristy place where any hint of a disease outbreak would be bad news. CDC head to Lake Tahoe and ignore Paul Cheney, one of the local doctors who again knows the history of those that are sick. He can't see any evidence of somatization bit does not physical signs that he recognizes so doesn't really know what to do to treat them - ends up with diagnosis PVFS / ME 1988, CDC decide it's not contagious, come up with a new name - Chronic Fatigue Syndrome - the name sticks in the US but not so much in the UK. Gary Holmes and a team write the Holmes criteria. They capture quite a large amount of people with psychological reasons for fatigue, but then there's the two schools of thought anyway. But Holmes honestly did his research. It would have been better to test the criteria with those without any mental health problems and compare with a mixed group - usually that's how things happen with any illness. Start with people with only the one illness. 1991, Michael Sharpe (PACE trial second author) decides to write some diagnostic criteria so research can get a bit better. A good decision. But he doesn't do research. And he doesn't bother with patients. He invites like minded people who agree with his views (psychologists and psychiatrists mostly) to a one day conference. At the end of the day they produce the Oxford criteria. Patients aren't involved (that's the norm for that time). Others holding different views aren't involved. And unfortunately the exclusions aren't so good so a fair number of people who have fatigue from severe depression or psychological issues end up labeled 'CFS'. The Oxford criteria is where things go really wrong - because all it need is unexpected fatigue for 6 months and a handful of exclusions like bipolar. The Oxford criteria mixes up those with physical illness with those who are somatizing - somatizing is a valid disorder, not any kind of secondary gain, but unfortunately the Oxford criteria mix up Idiopathic chronic fatigue with those that are similar to the patients from the original outbreaks - physical symptoms but not limited to fatigue and mild aches or pains. So you have two groups in one criteria. And idiopathic chronic fatigue is 3 times more common. Being psychiatrists, Sharpe, Wessely and others who wrote the Oxford criteria decide to try using CBT to help patients. CBT is about changing false/unhelpful thoughts. So someone with depression might be challenged to address depressive thoughts "I'm useless / I mess up everything / My friends hate me " then change behaviors based on them eg spending time with friends. Not controversial. So for CFS / ME / PVFS they come up with a list of false / unhelpful thoughts. One they choose is "I have a physical illness" - not every patient will agree with that do they pick others - "I can't go for a walk today because it's too exhausting " - then they tell patients to change behavior by doing what they are labeled "afraid" of. If the walk hurts patients are told they are exaggerating (catastrophizing is one of the unhelpful thoughts that CBT for any topic uses). But the problem is this / What if the patients do have a physical illness with an underlying disease? Investigations are labeled "harmful" and "colluding with patients' unhelpful views". But in any group there's a reasonable chance some got misdiagnosed. And if you compare Holmes 1988 criteria with Oxford 1991 criteria the patients aren't similar. The Holmes criteria group are much sicker. And there's already been some bits of research showing odd things in the bodies of patients. Brain and spinal cord abnormalities, including around the basal ganglia - which is implicated in some other illnesses like Parkinson's. British research now follows the Oxford criteria - with the idiopathic chronic fatigue (just fatigue) group out numbering the others by 3:1. 1994 CDC - Keji Fukuda runs the committee creating the Fukuda criteria. Fukuda splits long term unknown fatigue into Idiopathic chronic fatigue and CFS - I think the first Idiopathic chronic fatigue criteria. CFS has a worse prognosis. Compared to the CDC's older Holmes criteria the Fukuda patients are far less ill. It's really noticeable. And the Oxford criteria are far more likely to recover and far less ill than either of the others. Many good comparisons here. Fukuda becomes the standard - but most British research uses the Oxford criteria that mixes in 3 times more patients who have idiopathic chronic fatigue - which nobody really knows what it is. Could be some somatization. Might not be. Idiopathic chronic fatigue is classed in the "General signs and symptoms" I think on the ICD-10 - category R. Chronic fatigue syndrome / ME / PVFS all map to Category G - neurological. So research depends on if you have the less sick Oxford patients or the more sick (and more neurological) Fukuda / Holmes patients. Loads more criteria, especially the Canadian working definition and International Consensus Criteria. Canadian one is very narrow / strict - top researchers are now using it on the biomedical studies to try and narrow down the disease process more. Oxford vs Fukuda Holmes vs Fukuda Anyway, the whole thing is a mess, but the psychiatrists only want to use a psych based treatment, so CBT and Graded exercise therapy - which just means do less for the first 2 weeks, then increase by 10% every week until better (12 weeks max) - GET involves being told that physical symptoms are just from being unfit, there's no disease and you should make a full recovery - exactly what everyone wants to hear. Push through the symptoms because they are just normal aches and pains and not a sign of illness. Obviously if there does turn out to be an underlying disease this could be harmful. And that's what happens. 1998 Brynon John MP tried to exercise his way back to health. Like his GP said. Collapsed outside the house of Commons gym. Died. early 1990s Sophia Mirza gets CFS / ME / PVFS and eventually starts vomiting up everything including water. Because that's a lesser known symptom of severe ME / CFS. First nausea abd digestive symptoms, or new onset IBS, then organs start to fail. Unsurprisingly she dies. Autopsy confirms lesions in his spinal cord (I think). Confirms what she died of on her death certificate. Her mother campaigns for better treatment. 1990s full of Clinical trials - all CBT or GET - which is why so little is known about the illness. They had their 2 treatments, and didn't want to do much biomedical stuff. Illnesses like depression got a lot more funding and drugs. 1997 Fulcher and White published - that's Peter White, lead PACE trial author, on a treatment based on a diagnostic criteria he helped write, with the treatment based on Simon Wessely's cognitive behavioural model of CFS. If the treatment fails, it would be evidence that the model is wrong. 2007 NICE guidelines review published. The York Review turns out later to have used Simon Wessely's personal database. Unsurprisingly, it decides to agree with Wessely. Who is very high up on the Royal College of Psychiatrists. Can't think when but he was president one year and knighted, therefore giving him immense influence and nobody in establishment wants to say, hey - what if your model is wrong? Wessely admits there's little basis or evidence behind the Cognitive behavioral model of CFS, which is a massive contrast to its use in Depression, Anxiety, OCD, PTSD, etc. Speaking of PTSD he likes denying pretty much anything physical - Gulf War Syndrome? Must be PTSD. Wessely's working for the Ministry of Defense and again patients get horrible headlines about them in the press. NICE 2007 guidelines prematurely claim CBT and GET work. Long term illness fixed in 12 weeks? No medical equipment needed. It's a big incentive. But they still aren't quite sure so they keep funding more research... always on the Oxford criteria patients. The multi-million pound PACE trial - The ME Association actively campaign again it. So do some other charities. But ME Association is the 2nd biggest. Funding proposal keeps getting turned down - possibly because they want pacing tested since that is recommended by patients (and it's really really cheap!) Action for ME agrees to support PACE, which is a 4 arm trial - control, CBT, GET, specialist medical care (SMC), and Adaptive Pacing Therapy (sounds like pacing but turns out to be based on the same CBT model as the other treatments). Wessely helps design it. Wessely is manager for a centre for it. He's on the PACE trial steering group (read his credits in the trial - they don't list him as author... possibly since he's got such an awful reputation by that point for being really nasty and stigmatizing parishes). Remember: CBT and GET are based on a model claiming 100% recovery possible - change your thoughts, change your behavior, be cured. If it doesn't work you must not have done the work. 2009 PACE trial goes on for years. But patients have not wanted to do it - those who got sick in the decades before have already tried it and they mostly aren't better. Royal Free Hospital outbreak survivors still aren't better. And some people who do it say it made them so sick they never got back to walking again. PACE trial drops the entry criteria to recruit milder patients. SF-36 scores to join the trial are now lower than those labeled recovered. Action for ME are in the steering group. Action for ME promote the treatments. 2011 PACE trial published. A shock because pacing is pretty popular - not with everyone - but with a lot of people who've been ill for ages and who tried the other treatments and got worse. All results are based on differences in questionnaires - mostly the Chalder Fatigue Scale developed earlier by Trudi Chalder... with Simon Wessely. So PACE is using Trudi/Simon's theory with their questionnaire, in a trial they are both taking part in, using Sharpe's Oxford criteria, that Wessely and lead author Peter White helped to write. And the trial will help determine if CBT and GET help chronic fatigue syndrome - but White, Wessely and Chalder have already published studies claiming it works.! Trudi Chalder has a book out on how her own method and Simon's can cure you (it's not very popular...) Unblinded RCT that isn't even controlled, pre-specified outcomes are changed part way through even though it's obvious in an unblinded trial whether treatments are working or not. The Lancet (British again) publishes it. ME Association and some patients start to question. Where's the rest of the data? How much further could they walk in 6 mins after the end of the trial? How much did employment change? What happened to the gadgets to measure independently activity of patients? The ones supposed to check if they were doing the exercise but spending the rest of the time doing less to compensate? Why did some patients complain they were told to send them back? A bunch of academics and researchers, some patient groups and some MPs call for retraction. Including Infectious Disease specialist Jonathan Edwards, many top US researchers (UK biomedical funding is blocked), the Countess of Mar in the House of Lords, Charles Shepherd oc the ME Association, etc. 2014 FINE trial - different researchers, same CBT but with home visits and only for the severely ill. FINE trial reports null result. Some nurses/therapists have got so convinced that the treatment works (even though the trial is to find that out) that one says "The bastards just don't want to get better " - which shows some of the harm caused by clinicians when a treatment is entirely sold but just can't work 2014? to 2016 - UK Information Commissioner battle. Queen Mary University hold the data. Wessely is all over the newspapers with dramatic stories about harassment. Expert witness for PACE researchers claims scientists stop be harassed and patients who took part in the trial may be at risk (from other patients - many of them are housebound). Other scientists and researchers help one patient with the tribunal. Evidence of harassment is heard - and consists of someone heckling Trudi Chalder *once* overseas. I think in Norway. There's some account online from the guy responsible. No evidence of panic buttons, patients start filling Freedom of Information Act requests to police. Nobody can verify any arrests, questioning or reported crimes. Still can't. Queen Mary University expert witness rants about "borderline psychopathic men" - patient taking them to tribunal does so from home. Too sick to travel. 2016 PACE data released. Recovered patients are revealed to have 6 min walk results of a pensioner 20-30 years older, and barely any different than when they started. PACE didn't improve employment, work attendance or quality of life, and didn't improve SF-36 much, the patients had just ticked "better" on the questionnaire (for those 22% that "recovered".) AHRQ report from 2015 in the US gets Addendum. PACE has proved a null effect. So the FINE and PACE trial - both a null result - £7m between them - and those treatments behind them in place in the UK for 13 years - free on the NHS obviously - with no improvements in patients. If CBT and GET work, they why aren't patients better? I mean, patients with mental health needs (for comparison) they almost always want to do the treatments, or check out the risks and benefits. So how can these work when all around the world, they haven't helped? What about the psychologists who also think CBT abs GET don't work? And when you remove the Oxford criteria trials from the systematic reviews like Cochrane - the positive recommendation vanishes. Puff! Gone. Nil result for the other criteria. What about the Cochrane complaint that explained in great detail how Cochrane had applied it's own standards wrongly? How the standard GRADE assessment was flawed? Which is why Cochrane keeps updating the review. It's announced that it was withdrawing it, withdrew the related data, then kept the data withdrawn and just updated it. I think we are decreed updates after that. The original complaint - patient is now dead. (Another suicide.) Why did Cochrane Review go to the Common Mental Disorders group for a neurological disease? Why was Sharpe's colleague one of the reviewers? Why was it reviewed by a panel of 4, when 3 of the 4 had already published that Graded exercise therapy worked? If patients have supposedly been unhappy since 1988-ish with the CFS label, then why are things only changing decades later? Changes like that don't happen without major findings backing them up. If Wessely claimed to "know the cure" in 1989 - his methods haven't changed - they why didn't decades of people get better? Even in illnesses that are very contentious because they are largely (seen as) behavioral (anorexia, alcohol addiction) they have higher recovery rates. I think people don't get better because the treatments don't work. And the model doesn't work. And that's what the FINE trial showed, that's what the PACE trial data release showed. They don't work, so they are being dropped. (Rintatolimod also flunked it's RCTs later on in case you wondered - Norway - so not attempting to make new claims of some pet theory or pet drug). Merryn Crofts probably has a page on here too. Dead at 21, died in agony. With exercise increasing her rapid decline from CFS. Amousey (talk) 02:27, 27 May 2020 (UTC) Wow, just wow. All I'm going to say is you're wasting your time, and you're wrong about pretty much everything there. But that is beside the point. The talk page is for discussing changes to the article, not useless long incorrect diatrabes like this. I was really hoping you could make some useful additions to the article. --sciencewatcher (talk) 02:50, 27 May 2020 (UTC) @Amousey Please read Wikipedia:Talk page guidelines. What are editors supposed to do with that? It is just a big bunch of distracting original research without WP:MEDRS or WP:RS citations, or even a serious discussion what should be in the article. Got it. Some editors have a strong WP:POV about this article, nothing new about that! Please, just make an encyclopedic article using Wikipedia:Policies and guidelines. Thanks. Ward20 (talk) 04:13, 27 May 2020 (UTC) Amousey, OK, thanks for explaining: you're here to Right Great Wrongs. That's usually what gets people topic-banned. Guy (help!) 09:46, 27 May 2020 (UTC) Apologies for getting carried out posting. User:Doc James User:Ward20 Guy User:Sciencewatcher This isn't a soapbox. I intended originally to quickly update WP for the 'new' CDC treatment info. I figured it would be a no-brainer. There's loads of evidence of the change on ask the main government sources. What I am doing wrong with here? What is needed for other editors to recognize the need for updates? Why the push back in favor of keeping the page without updates? Sources I have are CDC, NHS Scotland 2020, Cochrane Review announcement. Wikipedia categories for the illness were already: Neurological, Immunological. The page already quotes CDC stating it's a physical illness, footer links to ICD-11 and ICD-10 categories - but "medical" gets deleted from the description. Guy you practically live on WP. What do I need to do differently? Amousey (talk) 11:57, 27 May 2020 (UTC) Amousey, edit some other articles, gain more experience on WIkipedia, mainly leave this article alone, and when you do come here, suggest changes on talk before making them, and don't revert all and sundry if they undo your changes. Oh, and acknowledge any connection witht the ME activist groups whose opinion you promte above. Guy (help!) 12:03, 27 May 2020 (UTC) Guy Ty for the reply. I am talking more on the page here. But nothing I have seen says that editors must leave certain articles alone if they are out of date. That's kind of odd. I don't want to make trivial edits to well kept pages that don't need input. I prefer to do well sourced updates for things that are really wrong and / or very out of date. If sources are lousy there's no point (see my prevention topic). I feel telling me to go somewhere else is coming across as a desire to maintain a status quo and ignore what's new. I honestly don't get how a major place like the CDC changes track but here I am told not to update that? I don't like how as an admin here, it feels to my like you are saying "go away" as if someone here owns the page and other editors aren't welcome. It's pretty intimidating. I would really like people to engage with the sources and take the time to see what's changed. Amousey (talk) 13:54, 27 May 2020 (UTC) Amousey, the issue is the decade plus of presenting "does not reflect my belief that CFS is only ME, a physical disease" as "out of date". And you do keep forgetting to answer the question of what your connection is with ME activist groups. You're right, I have a certain suspicion of them: they have been trying to abuse Wikipedia to reflect their POV as the sole truth almost since day 1, whereas the sources fail to do that. Guy (help!) 23:12, 27 May 2020 (UTC) It doesn't mattter if there is a connection with a "certain suspicion of them". Please see Wikipedia:No personal attacks, "Using someone's affiliations as an ad hominem means of dismissing or discrediting their views". Ward20 (talk) 00:10, 28 May 2020 (UTC) Affiliations are relevant in an area where activists have long pushed for a different view of the subject from that seen in reliable sources, as its the case here. It's doubly relevant when someone won't be open about them. That's WP:COI 101. Guy (help!) 08:34, 28 May 2020 (UTC) Amousey, would you please use the collapse top and collapse bottom templates[20] on this section? The talk page is already very long and this discussion is somewhat off topic to improving the article. Thanks. Ward20 (talk) 19:45, 27 May 2020 (UTC)

Guy CFS criteria on the CDC website got changed but the WP page didn't - CDC website is nothing like the ME criteria. CDC changed their criteria from 1+4 symptoms to 3+1 but different criteria, they dumped 2 treatments and added very basic management recommendions. The pacing info on the page was a bit jumbled so I sorted that. That's it literally. I cited the updates of what's already in use. "My" sources were the updated CDC, Cochrane, AHRQ, ICD - all were already on the page but updated on/after 2016 because of the PACE trial data release and the ICD-11 update. I only added Vink because someone wanted proof that the CDC has originally had different treatment recommendations. I did not cite ME criteria - nor would I have tried to - I cited the primer's treatment pages which support the updated sources. Oxford criteria was about Chronic Fatigue vs CFS (CFS is Chronic Fatigue + minimum of 4 other symptoms). Nothing to do with the pointless ME vs CFS debate. I cited CDC criteria and treatments only. I think my edits would have had a different reception had this page not had the history it has. Amousey (talk) 00:37, 28 May 2020 (UTC)

User:Amousey: everyone here is very familiar with the various criteria, and the recent changes to the CDC website (or at least they should be). You should assume good faith, rather than automatically assuming (incorrectly) that we don't know what the fuck we're talking about. Oxford is CFS, not CF (see the actual definition). Whether it's a good definition or not is a separate issue. Your edits are only problematic due to failure to follow wikipedia rules. I see you haven't re-added your content to the treatment page since my revert of your changes to the lede. That wasn't my intention...I'm happy for you to make those changes to the main body of the treatment page, and then update the lede accordingly in an NPOV way. I just don't have the time, energy or motivation to fix your edits, and you seem to be quite happy to make a lot of changes, so feel free to go ahead and make your changes, but don't bollicks up the lede by making it have nothing to do with the main article! That's all there is to it...there isn't some huge conspiracy to keep the pages as-is. I can't speak for Guy, as he may have other issues with your edits. I will just say that just because CDC has removed GET/CBT from their website doesn't negate all the existing evidence. You just need to edit the page to reflect the evidence (even if apparently conflicting), and that is the key to editing wikipedia. --sciencewatcher (talk) 02:09, 28 May 2020 (UTC)

User:Amousey, I concur with User:Sciencewatcher's comments. Ward20 (talk) 04:36, 28 May 2020 (UTC)

Thanks User:Sciencewatcher - my comments was a reply to Guy only who has commented as if I was trying to replace CDC with ICC criteria. Have you voted on his roll back RfC? I aimed to do exactly what you mention here - update per CDC, change order of treatments to reflect current recommendations. The overall consensus to use GET & CBT has changed not only in US but in Netherlands and UK NICE guidelines are being reviewed due to new evidence. Have had difficulty here because well known sources have changed their recommendations and at least some reverts seem because on what the source used to say rather than the updated one. I have ceased editing for the moment. I have voted on RfC for lead. Amousey (talk) 12:20, 28 May 2020 (UTC)

Amousey, my comment is based on the fact that I am profoundly weary of the endless POV-pushing by "ME" activists who, like you, misrepresent what CDC and others say. There is still no known aetiology, no definitive pathology, no evidence that CFS is (always or ever) a form of encephalomyelitis. The sources are pretty clear on this, but "ME" activist groups absolutely will not accept any answer other than the one they want. I don't care whether they are right or not: I do care that they are presenting a view that has no objective proof as if it were the sole and ineffable truth. You keep forgetting to say what your connection is with them, by the way. Guy (help!) 12:28, 28 May 2020 (UTC)

Amousey, the CDC has removed the terms CBT and GET, but they still recommend exercise and psychotherapy. It should be possible to do represent all major viewpoints in an NPOV way. It just makes editing this page a little tricky, as you need to figure out how to properly represent the current status quo on the page. --sciencewatcher (talk) 16:39, 29 May 2020 (UTC)

Sciencewatcher I hope so too. The CDC before were using them as treatments with a deconditioning theory, so changing to management is a shift. CDC kind of recommends exercise but specifically not aerobic exercise so that's new (I'm sure you will have read the Workwell studies on aerobic/anaerobic threshold), and they also removed the previous suggestion for exercise to help sleep. BTW I was the one who created both the counseling and exercise headings under management - before only GET was described under exercise, and CBT was a heading for the illness beliefs but not counseling kind - so I felt it confused things. Likewise, pacing was described as if it was the same as the PACE's trial's APT. Btw have got a page created for Pacing (activity management) just started - there wasn't one before. Amousey (talk) 00:41, 30 May 2020 (UTC)

RfC: How should we begin this article?

How should we begin this article? Based on discussion here. Doc James (talk · contribs · email) 10:50, 27 May 2020 (UTC)

Option 1a

is a medical condition characterized by long-term fatigue, worsening symptoms after physical or mental activity, and unrefreshing sleep. Difficulty sitting and standing upright or problems with memory or thinking are also present. The condition often limits a person's ability to carry out ordinary daily activities. People's ability to function differs from that before the onset of the disease. Many people also have various other symptoms.

Discussion

• Support Neutral and too the point. Doc James (talk · contribs · email) 10:50, 27 May 2020 (UTC)
• Support. Spot on. Even if ME activists are right, and it does eventually turn out to be a form of encephalomyelitis, we do not at this stage have any proof that this is so, the etiology is unknown, there is no definitive pathology, there's no way of distinguishing "ME" from post-viral syndrome or anything else, so it has to be described in terms that do not prejudge any of these things. Guy (help!) 11:01, 27 May 2020 (UTC)
• Partial Support. Reads well, not emotive. Would be inclined to change the end of the second sentence to "may be present" or "may occur" as these symptoms are not universal as far as I am aware. Last sentence leaves it hanging a bit - perhaps mention some of the other common symptoms i.e. "Many of those affected have various other common symptoms such as irritable bowel syndrome and palpitations" or another selection from the main body of the article. PeaBrainC (talk) 11:39, 27 May 2020 (UTC)
  • User:PeaBrainC if you read the source regarding the second sentence, one or the other is required to be present per the definition. Happy with your suggestions around the final sentence, would go with "main pains and headaches" as this are given prominence in the source. Doc James (talk · contribs · email) 12:05, 27 May 2020 (UTC)
• support per Guy rationale--Ozzie10aaaa (talk) 12:31, 27 May 2020 (UTC)
• Support as current consensus version, balanced. JFW | T@lk 14:51, 27 May 2020 (UTC)
• Oppose Partial Support, Better than what is in the lead presently. There are a few differences from the cited definition that can be discussed after. Ward20 (talk) 18:25, 27 May 2020 (UTC) I just realized this version does not plainly describe a core feature of the diagnosis discussed first by the three best WP:MEDRS sources, NICE, CDC, and IOM. That is a substantial reduction in pre-illness ability or activities that occurs along with fatigue. That should be changed IMO. Ward20 (talk) 04:26, 28 May 2020 (UTC)
  • We have "People's ability to function differs from that before the onset of the disease" User:Ward20. Doc James (talk · contribs · email) 05:14, 28 May 2020 (UTC)
    • Yes, but why have two sentences to say what one does much more accurately (substantial reduction vs often limits), and better ordered to the way the 3 sources describe it? The 4th sentence is vague; ability to function differs how? If you know what the defintions say, and properly piece parts of sentences 3 and 4 together, you can get a sense, but it is still vague and imprecise. Ward20 (talk) 06:02, 28 May 2020 (UTC)
      • Okay so "The condition often limits a person's ability to carry out ordinary daily activities and differs from that before the onset of the disease."? Doc James (talk · contribs · email) 08:38, 28 May 2020 (UTC)
        • If proposed as right after name, much better. Except all three sources use an adverb similar to "severely" diminishes, and is mandatory for a diagnosis, not optional as the word "often" might suggest. This symptom is also accompanied by long-term fatigue. Suggest illness rather than disease. Ward20 (talk) 11:29, 28 May 2020 (UTC)

• Oppose. It's now got post-exertional malaise as the hallmark symptom, and this is not WP:NPOV with that hanging sentence - source does not prioritize 3 symptoms over the 5 core symptoms. The reduction is functioning is prioritized by CDC over fatigue. User:Ward20 Not seen you voting here. Amousey (talk) 23:07, 27 May 2020 (UTC)

• support It is very brief and concise. Idealigic (talk) 23:03, 28 May 2020 (UTC)
• First choice - it reads well and is relatively clear. After a quick glance through the now-voluminous talk page discussion here, I think I still prefer a version that looks like this. It's not essential to have all diagnostic criteria in the opening couple of sentences on an article (in my opinion, doing so makes the lead feel cluttered and overly formalistic). Ajpolino (talk) 23:18, 28 May 2020 (UTC)
• Support best option available here. Once upon a time . . . would be better. -Roxy the elfin dog . wooF 12:01, 1 June 2020 (UTC)
  • Once upon a time . . . would be better.??? Not familiar with what's meant by that. Would you please explain. Thanks.Ward20 (talk) 12:18, 1 June 2020 (UTC)
    • "Sit down in a circle now children. (Don't do that, George.) . . . Once upon a time... " -Roxy the elfin dog . wooF 13:08, 1 June 2020 (UTC)

Option 1b

"is a medical condition characterized by long-term fatigue that limits a person's ability to carry out ordinary daily activities, worsening symptoms after physical or mental activity, and sleep problems. There is also either worsening or symptoms when sitting or standing upright or problems with memory or thinking."

Discussion

• Prefer option 1 a. The ref does not say that the limited ability to carry out ordinary activities is due to fatigue alone. Doc James (talk · contribs · email) 10:51, 27 May 2020 (UTC)

Easily fixed by putting diminished ability cause first, and accompanied by fatigue, which is what the sources say. I would Support then. Ward20 (talk) 05:03, 28 May 2020 (UTC)

• 1a is better. Guy (help!) 11:01, 27 May 2020 (UTC)
• Oppose. Less consistent with sources. JFW | T@lk 14:51, 27 May 2020 (UTC)

Partial Support. Still not consistent with source since functioning is seen as less important than fatigue - which is the opposite to CDC. Amousey (talk) 23:09, 27 May 2020 (UTC)

• Second choice - this one is fine too, I just think 1a reads bettter. Ajpolino (talk) 23:18, 28 May 2020 (UTC)
• First runner up second choice after 1a. -Roxy the elfin dog . wooF 11:55, 1 June 2020 (UTC)

Option 2

"is a complex, multi-system medical condition characterized by an inability to produce enough energy on demand, a greatly lowered ability to do usual activities, extreme long-term fatigue, sleep problems, and either worsening symptoms upon sitting or standing or problems with memory or thinking."

Discussion

• Oppose this is a single overly complicated sentence. Also "extreme" and "complex" are simple not needed. Doc James (talk · contribs · email) 10:52, 27 May 2020 (UTC)
• Oppose. Less clear and further from the sources than 1a. Guy (help!) 11:01, 27 May 2020 (UTC)
• Oppose per James & Guy. JFW | T@lk 14:51, 27 May 2020 (UTC)
• Strongly support. More consistent with sources and understandable Amousey (talk) 23:11, 27 May 2020 (UTC)
• I prefer 1 or 1a. This one is a bit hard to get through. "Inability to produce enough energy on demand" is a tough start to the list. Ajpolino (talk) 23:18, 28 May 2020 (UTC)
• Oppose energy on demand wut? -Roxy the elfin dog . wooF 11:53, 1 June 2020 (UTC)

Option 2b

"is a serious, multi-system medical condition characterized by:

• a greatly lowered ability to do usual activities along with extreme, long-term fatigue
• worsening of symptoms after mental or physical activity (e.g. "crashes")
• sleep problems, and
• either worsening symptoms upon sitting or standing or problems with memory or thinking.""

Discussion

• Oppose Do not support starting this article with a list. Doc James (talk · contribs · email) 10:53, 27 May 2020 (UTC)
• Oppose. Less clear and further from the sources than 1a. Guy (help!) 11:01, 27 May 2020 (UTC)
• Oppose. Yuch, never put bullet points in the lead section. JFW | T@lk 14:51, 27 May 2020 (UTC)
• Support. Don't mind if the bullets go. Amousey (talk) 23:22, 27 May 2020 (UTC)
• NOPE needs prettier bullet points, and 1a is better. -Roxy the elfin dog . wooF 11:51, 1 June 2020 (UTC)

Option 3

is a complex medical condition characterized by extreme long-term fatigue, sleep problems, problems with thinking or memory, worsening symptoms upon sitting or standing, pain, and other symptoms that are made worse by effort of any sort. Chronic fatigue syndrome can severely impair a person's ability to carry out their normal activities.

Discussion

• Oppose we do not need "extreme" or "complex". We describe the condition. What is more important is that it typically affects functioning. Doc James (talk · contribs · email) 10:55, 27 May 2020 (UTC)
• Oppose. Less clear and further from the sources than 1a. Guy (help!) 11:01, 27 May 2020 (UTC)
• Oppose. Less good. JFW | T@lk 14:51, 27 May 2020 (UTC)
• Support. Diagnosis is excluded unless fatigue is profound, extreme = profound. Complex is in the sources. Its misunderstood: many people think it's "chronic fatigue". They aren't aware it impacts multiple bodily organs. Closer to sources than 1a but given last sentence extreme would be obvious so could be taken out. Equality between core symptoms is why I like this, and it makes it clear that any symptom is affected by the post-exertional malaise (it's not limited to fatigue). Amousey (talk) 23:17, 27 May 2020 (UTC)
• This one is also fine for me if we lose the "complex". Ajpolino (talk) 23:18, 28 May 2020 (UTC)

I'm ok with that change . Amousey (talk) 03:08, 29 May 2020 (UTC)

• Oppose per reasons. -Roxy the elfin dog . wooF 11:50, 1 June 2020 (UTC)

Option 4

is a complex, frequently long and debilitating, often misunderstood medical illness. It is diagnosed by: a large reduction in a person's functional ability to carry out ordinary daily activities, along with extreme, long-term fatigue, worsening symptoms after physical or mental activity, and unrefreshing or disturbed sleep. Difficulty with sitting and standing or cognitive dysfunction are also present. Other symptoms frequently occur in those affected, and may involve numerous body systems.

Discussion

• Oppose Overly emotive in my opinion. We do not need the term debilitating as we state it causes a reduction is daily functioning. Doc James (talk · contribs · email) 10:56, 27 May 2020 (UTC)
• Oppose. Less clear and further from the sources than 1a. Guy (help!) 11:01, 27 May 2020 (UTC)
• Oppose. NPOV issues. JFW | T@lk 14:51, 27 May 2020 (UTC)
• Support. I think the "frequently long" bit isn't good grammar and isn't necessary. I like starting by pointing out its misunderstood. Its by far closest to the CDC. CDC starts with this bit, which isn't in most choices here Amousey (talk) 23:21, 27 May 2020 (UTC)
  • "Greatly lowered ability to
• oppose per JFW --Ozzie10aaaa (talk) 12:56, 28 May 2020 (UTC)
• Oppose per JFW -Roxy the elfin dog . wooF 11:49, 1 June 2020 (UTC)

References

References

Roll back

It's clear by now that Amousey's edits are (a) controversial, (b) occasionally tendentious, and (c) motivated by a desire to Right Great Wrongs (per the diatribe above). At this point I think we should roll back to the status quo ante and allow Amousey to advocate any specific changes and achieve consensus one by one. Guy (help!) 11:08, 27 May 2020 (UTC)

• Support especially based on the concerns around sourcing changes. Doc James (talk · contribs · email) 12:09, 27 May 2020 (UTC)

WP is not a place to right great wrongs and I sure don't have the power to do that. My first edits reflected what I wanted to do - update based on new CDC info.

I have ceased reverting and editing for the time being and responded your message on my talk page, and also requested info from others on how to move forward. Amousey (talk) 14:34, 27 May 2020 (UTC)

• Support. Too much evidence that edits will not be neutral. JFW | T@lk 14:45, 27 May 2020 (UTC)
• Oppose a wholesale rollback to a static previous version. There are too many outdated sources and much material thet have been improved that will be reverted if that occurs. I am not sure how it could be best accomplished, but I would suggest trying to keep the improvements to the outdated references and material and reverting the material not WP:NPOV or sourced by non reliable references. Ward20 (talk) 18:02, 27 May 2020 (UTC)

around 8,000 edits over 13 years, 16% of them to this topic. Yes, I am not surprised you oppose. Guy (help!) 23:00, 27 May 2020 (UTC)

Please see Wikipedia:No personal attacks, "Insulting or disparaging an editor is a personal attack regardless of the manner in which it is done." Ward20 (talk) 23:59, 27 May 2020 (UTC)

Ward20, it's not a personal attack, it's noting that you appear to have a dog in the fight, and, more specifically, that editors with vast nuymbers of edits to vast numbers of articles all think one thing, and you and Amousey, who have few edits to a few articles, with this as a major focus, want to mopve the article towards the ME activist POV and away from the long-standing consensus version. Guy (help!) 08:39, 28 May 2020 (UTC)

JzG, Everyone has a POV.[21] Wikipedia:Civility Don't make snide comments. Wikipedia:No personal attacks: Comment on content, not on the contributor. Full stop. I'm unaware of any WP:Policy that my 8,432 Wikipedia edits with 99 deleted edits and 761 edits to the CFS article, with 761 edits to talk conflict with any standards. I am unaware of WP:policy that edit counts, or concentrating 16% of my edits to an article will catagorize me with some group deemed undesirable. Enough, please. I strive to make my editing adhere to the best reliable sources I can find. If anyone finds a better contemporary source that doesn't agree with my POV, I will totally accept that POV in the article, and I have written such POVs into this article. I would rather not discuss my editing on this page unless it is about a specific edit. Thank you. Ward20 (talk) 22:41, 28 May 2020 (UTC)

Ward20, I am merely pointing out that the editors supporting rollback have vast numbers of edits to vast numbers of subjects, and the two opposing have few edits to few subjects, which this dominating for both. In other words, two activists v. three much more experienced editors with no obvious dog in the fight. Guy (help!) 17:50, 29 May 2020 (UTC)

The topic I would like to discuss is if there is a way the way to practically remove what is being objected to, without removing the improvements that have been added such as citation upgrades and any new added material or changes that has consensus. I was thinking about moving a working copy of what we have to Chronic fatigue syndrome/sandbox and marking it up in order to see where we are, and whether it would be easier to modify down the article or rolling back and then building back up. Ward20 (talk) 18:29, 29 May 2020 (UTC)

I am not sure how long these voting things stay open for, but I think it's fairly straightforward to do a section or a few sections rather than a full roll back. I think I saw a bot come round and rescue an orphaned citations too. Amousey (talk) 21:41, 29 May 2020 (UTC)

Oppose. I added several new paragraphs that are totally uncontroversial (Exercise, Counseling, Adaptive Pacing Therapy, Energy Envelope Theory, and fixed the Pacing one). I added stuff to the info box in place of blanks with consensus. There's now a load of old content marked up as verification failed - and none of that content is mine. It's because the CDC rewrote their entire CFS section, and changed their primary treatments. I guess I should have marked up the whole lot as verification failed and let you fix it.

There are 3 sources I'm using that are the ones that were originally used, all 3 have changed in the same way. AHRQ report got an addendum, CDC and Cochrane's latest update. I haven't edited for over 24hrs and given how much was reverted I doubt there is much left that I added except the additions. This appears to be about looking for a way to avoid updating a very out of date page. Amousey (talk) 23:47, 27 May 2020 (UTC)

• support per JFW--Ozzie10aaaa (talk) 10:36, 1 June 2020 (UTC)
• Support per JFW and others. -Roxy the elfin dog . wooF 11:44, 1 June 2020 (UTC)
  • Move to close at 5 support to 2 oppose in order to determine how and where to roll back to. It would be advantageous to do it sooner than later so as not put extra effort into rework needed for changes to fix the obsolete references and new sections that are non-controversial. Ward20 (talk) 12:09, 1 June 2020 (UTC)

Cite maintenance has been removing accessdate and web archive urls from references

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)

Vancouver style errors

reference info for Chronic fatigue syndrome

unnamed refs	0
named refs	0
self closed	0
explanations

With this edit, Editor Ward20 added this {{cite journal}} template:

{{cite journal |vauthors=Richman S, Morris MC, Broderick G, Craddock TJA, Klimas NG, Fletcher MA |title=Pharmaceutical Interventions in Chronic Fatigue Syndrome: A Literature-based Commentary |journal=Clin Ther |volume=41 |issue=5 |pages=798–805 |date=May 2019 |pmid=30871727 |pmc=6543846 |doi=10.1016/j.clinthera.2019.02.011 |url=}}

Richman S, Morris MC, Broderick G, Craddock T, Klimas NG, Fletcher MA (May 2019). "Pharmaceutical Interventions in Chronic Fatigue Syndrome: A Literature-based Commentary". Clin Ther. 41 (5): 798–805. doi:10.1016/j.clinthera.2019.02.011. PMC 6543846. PMID 30871727. {{cite journal}}: Vancouver style error: initials in name 4 (help)

Note the Vancouver error message. That error message is emitted because Craddock TJA does not comply with the rules for the Vancouver style.

|vauthors= expects that the supplied author names comply with the rules set out at Patrias K (2007). "General Rules for Author". In Wendling D (ed.). Citing Medicine: The NLM Style Guide for Authors, Editors, and Publishers [Internet] (2nd ed.). Bethesda: National Library of Medicine. specifically the fourth bullet point.

Because the above {{cite journal}} template emits a Vancouver style error message, I fixed it by changing Craddock TJA to Craddock TJ. Editor Ward20 reverted my fix with this edit summary: No. this this correct. See: https://pubmed.ncbi.nlm.nih.gov/30871727/?from_term=Craddock+TJ%5BAuthor%5D&from_pos=2

PubMed does not always comply with the rules for author names that they have adopted.

There are a lot of inconsistencies in this article's citation style but it is apparent that the use of |vauthors= (Vancouver style) is the preferred method for listing author names in cs1|2 citation templates. If that is the preferred form then Editor Ward20's revert of my edit should be reverted so that that particular citation complies with Vancouver style.

—Trappist the monk (talk) 23:16, 27 May 2020 (UTC)

Sorry. Will do. Ward20 (talk) 23:40, 27 May 2020 (UTC)

Thanks for explaining User:Trappist the monk. Since you don't want comments on your talk page I want to express thanks here for work and improvements on the Citation templates and especially the CS1 module over the (many) years. Amousey (talk) 03:17, 29 May 2020 (UTC)

Comorbid conditions

I added a small paragraph about it in Signs and symptoms. Now i'm torn whether it may be more appropriate under the first part of Management. Opinions please. Thank you. Ward20 (talk) 18:51, 29 May 2020 (UTC)

External links

I would like to add some links, especially given that it is a poorly understood illness. Particularly perhaps somewhere that had a printable info sheet? I'm open to suggestions since the links I put before were removed. Any suggestions of types of links for medical pages would be welcome. And is it ok to link to pdf files or not? I have noticed the CDC have a clinician's guide for example. Amousey (talk) 01:58, 31 May 2020 (UTC)

Adequate nutrition and personal care is recommended. That can be difficult when money, cognition, and stamina is diminished. Maybe a reliable source that describes how to better accomplish this when dealing with the symptoms? I have not come across this, and I don't think it would be a good fit in the body of the article. Ward20 (talk) 03:12, 31 May 2020 (UTC)

Ward20 I haven't seen one about that, but this from CDC might be useful. Amousey (talk) 23:50, 31 May 2020 (UTC)

It would be better if a source could be found that described the topic from a more generic POV rather than only USA SS disability regulations.

After scoping out that page, I found this CDC "ME/CFS in Children Fact Sheets" page.[22] It covers a lot of pediatric issues not in the article. I think that would be a good addition. It could also be useful in determining what information the article should include, as it is not well represented. Ward20 (talk) 02:25, 1 June 2020 (UTC)

That's a great resource. I don't think it's possible to find anything on disability that covers multiple countries - all the assessment processes and systems are different. Amousey (talk) 02:32, 1 June 2020 (UTC)

One in a 100

User:QuackGuru, is this data from Australia, or is it in some other population? Thanks. Ward20 (talk) 02:58, 1 June 2020 (UTC)

See "Chronic fatigue syndrome (CFS) is a prevalent condition affecting about one in 100 patients attending primary care."[23] The PDF file does not provide any citation for the claim. QuackGuru (talk) 03:43, 1 June 2020 (UTC)

The prevalence of ME/CFS varies among different studies depending on how this pathological condition is defined, the population surveyed, and the employed methodology. Terminological variations and inconsistencies in how definition and labels are used in different studies of ME/CFS pose a challenge to compare different global cohorts. Therefore, there is a need to unify the diagnostic terminology, and this constitutes a goal in the investigation process.

Fatigue is commonly experienced by patients presenting different pathological conditions. Thus, it is necessary that any clinical measurement of fatigue differentiate between ordinary fatigue and a symptom of a pathological disease. It is essential to be aware that the boundaries between normal and abnormal fatigue are arbitrary. For instance, some authors argued that fatigue should be considered unusual when the fatigued person views himself or herself to be ill. A number of surveys conducted around the world proposed that the prevalence of fatigue among the adult population is considerable. The Office of the Privacy Commissioner of Canada (OPC) survey of psychiatric morbidity in the United Kingdom (UK) found that 27% of all adults reported significant fatigue in an ordinary week, and pointed out that the prevalence of chronic fatigue was 13.4% in that population. A comparable study from the United States reported a prevalence of 6% of unexplained fatigue lasting more than two weeks. One study involving the population of 143,000 people between 18–64 years of age from England reported an incidence of 4.7% of the included cases in the population and an overall prevalence rate of 0.20%. Lawrie et al. estimated the annual incidence of CFS as 370 per 100,000 and the prevalence as 740 per 100,000 individuals in a study executed in Edinburgh, Scotland.

ME/CFS is an endemic disorder that affects all racial/ethnic groups and is seen across all socioeconomic strata. Most studies of gender differences report higher rates in women. However, it has been suggested that gender differences may occur as an artefact of recruiting samples in a gender-biased manner from different specialist centers. For example, in a prospective cross-sectional cohort study performed in a rheumatology center in Spain, statistical tests were omitted to determine the significance of the gender, suggesting a possible bias. Nonetheless, many community-based studies indicate that there may be a real gender difference.

The median duration of the illness is approximately seven years, a quarter of those with the disease are unemployed or disabled, and the average affected family forgoes approximately $20,000 in annual earnings and wages. Kroenke et al. found a comparison with the disability experience in some medical conditions such as untreated hyperthyroidism and myocardial infarction.

The prognosis of patients with ME/CFS is variable. For some patients, an improvement in symptoms is a more commonly reported outcome than full recovery, and the prognosis in this case is less disappointing, especially among patients in primary care. Some of the most prominent risk factors that predict progression are the severity of the symptoms at the time of onset, the standard of early management of the disease, having a mother with the syndrome, and comorbid diagnosis of fibromyalgia. The attribution of CFS to a physical cause and poor control over the symptoms have been associated with worse outcomes in those patients. Death in patients with ME/CFS is usually caused by another co-existing illness, in which cancer and cardiovascular abnormalities are the most common causes of death among this population.

References

If you want more content about Epidemiology the content above is under a compatible license per WP:MEDCOPY. QuackGuru (talk) 04:05, 1 June 2020 (UTC)

Diagnostics (Basel) is not a great source. Alexbrn (talk) 12:37, 1 June 2020 (UTC)

This exact same source already used in the article per consensus. QuackGuru (talk) 15:17, 1 June 2020 (UTC)