Talk:PACE trial

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This is wonderfully comprehensive but no longer a digestible primer to give general audiences an overview of PACE history, trial design, flaws, controversies. Suggest dramatically shortening the article and moving more detailed sections to independent pages, linking to main page using the Main template (see: myalgic encephalomyelitis for example) --JenB (talk) 00:31, 10 July 2018 (PDT)

There are already many primers and overview including by #MEA for general audience and if required a seperate shorter primer can also be done. This is an encyclopaedia and therefore all the comprehensive information should be contained here in one location for ease and reference purposes. This can be discussed in due course if required. — Preceding unsigned comment added by Canary (talk • contribs) 17:07, July 10, 2018‎

Perhaps add this Times article[edit source | reply | new]

https://twitter.com/RobertHMcMullen/status/1031932838482993154?s=09 Ollie (talk) 05:52, 1 September 2018 (EDT) - Finding of £5m ME/Chronic Fatigue study worthless https://www.thetimes.co.uk/article/findings-of-5m-me-chronic-fatigue-study-worthless-89z8x0xzr

References, query on order used[edit source | reply | new]

Is there a reason why the first references used link to the trial protocol, rather than the published study? I think that is counter-intuitive, most users coming to this page would want to access the full study, rather than the initial protocol. AndyPR (talk) 03:57, 3 July 2018 (PDT)

Your idea makes sense to me. I support the references being changed. Kmdenmark (talk) 11:00, 3 July 2018 (PDT)

Agree this is not correct, would be better done as you suggest. Feel free to reorder them. Ollie (talk) 04:15, 4 July 2018 (PDT)

Content to add[edit source | reply | new]

1. Simon Wessely uses PACE criticism to portray himself as victim of abuse - Referring to a 'group of activists' with CFS/ME, he stated "[t]hese people are sulphurous, vicious, horrible."

"Since PACE was published this has become more intense, and at present the police are looking into two cases in which specific threats have been made to my physical safety. " Nigel Hawkes interview as cited on Wessely's page

FOIA - no threats to researchers proved tribunal hearing proves no PACE researchers (including Wessely - who was a center manager?) had any direct threats at this point - showing Wessely led in interview about police investigating such threats - note in interview or includes pic of message saying "I hope you die" - not a threat - ICO FOIA source p36-37 "no direct threats", p30 "activists" as a disparaging term, p19-20 comparison with animal rights activists here (and in previous media by Esther Crawley, Simon Wessely, possibly Trudie Chalder is baseless according to judgments on p36-37). Consider adding to Stigma page.

Notjusttired ---

2. The planning, implementation and publication of a complex intervention trial for chronic fatigue syndrome: the PACE trial Peter D. White,1 Trudie Chalder,2 Michael Sharpe Notjusttired notjusttired (talk) 11:44, 3 December 2018 (EST)

3. Consider covering nasty tweet from Michael Sharpe (since deleted) about Alem Matthees and other activists and their FOI act requests and doubting they are sick of they can do this / comment relating to mental stability - see letter demanding apology from over 100 people on virology

notjusttired (talk) 11:44, 3 December 2018 (EST)

Actigraphy article by Lucy (ex Lancet) https://lucibee.wordpress.com/2018/05/09/pace-trial-whatever-happened-to-actigraphy/ Ollie (talk) 03:17, 16 May 2018 (PDT)

FOIs https://www.whatdotheyknow.com/user/g_ryan https://www.dropbox.com/s/gdcdwlj4kyq3x2t/R%20-%20PACE%20Trial%20application%20150218.pdf?dl=0


To add reference from MSM about impact on bio research of the PACE trial http://www.sciencealert.com/chronic-fatigue-syndrome-low-energy-production-in-cells-metabolic-disease http://www.dailymail.co.uk/health/article-5058807/People-chronic-fatigue-syndrome-exhausted.html


Regarding the peer-reviewed papers criticizing the trial. It would be good to have all of them (or links to where they are on this page) in a single section that is linked to from the table of contents. (I came to check to see the size of the list and did not find the section.)

We should include links to the SMC "expert opinions" for each of the papers.Olliec (talk) 04:38, 29 November 2015 (PST)

We should include a link to a full copy (hosted where?) of the PACE "Manual for Therapists" (are there separate manuals for CBT/GET?). PACE web site copies deleted. Olliec (talk) 04:38, 29 November 2015 (PST)

And perhaps include notable quotes from the papers/manuals like this https://twitter.com/batteredoldbook/status/670579432483090433/photo/1 Olliec (talk) 04:38, 29 November 2015 (PST)

We should also add notable criticisms from Malcolm Hooper, not sure yet where to find them. Olliec (talk) 04:39, 6 December 2015 (PST)

More links to consider using as references: Invest in ME criticism http://www.investinme.org/IIME-Newslet-1511-01.htm RetractionWatch response re recent paper data release refusal http://retractionwatch.com/2015/12/12/weekend-reads-what-do-phds-earn-does-peer-review-work-collaborations-dark-side/ https://jcoynester.wordpress.com/2015/12/12/formal-request-to-plos-one-to-issue-an-expression-of-concern-for-pace-cost-effectiveness-study/ https://dl.dropboxusercontent.com/u/23608059/PACE%20F325-15%20-%20Prof.%20James%20Coyne%20-%20Response-2.pdf http://www.ncbi.nlm.nih.gov/pubmed/22870204#cm22870204_13300 https://en.wikipedia.org/wiki/Chronic_fatigue_syndrome_treatment#PACE_trial Olliec (talk) 03:16, 13 December 2015 (PST)

Another Coyne FoI blog to add https://jcoynester.wordpress.com/2015/12/13/why-i-dont-know-how-plos-will-respond-to-authors-refusal-to-release-data/ Olliec (talk) 02:18, 14 December 2015 (PST)

PLOS response to data request. http://www.plosone.org/annotation/listThread.action?root=87754 and Coyne blog about it. https://jcoynester.wordpress.com/2015/12/15/plos-one-response-to-concerns-about-kings-college-refusal-to-share-pace-data/ Olliec (talk) 06:10, 15 December 2015 (PST)

Consider including this chart of the PACE data (by patients, who?). https://twitter.com/Katiissick/status/676317109685587968?s=09 Olliec (talk) 06:26, 15 December 2015 (PST)

More from Jonathan Edwards, https://twitter.com/sandwichpickle/status/676789963917275136/photo/1 Olliec (talk) 08:43, 15 December 2015 (PST)

Chronology from Malcolm Hooper http://www.meactionuk.org.uk/PACE-Trial-Complaint-Chronology-FINAL.htm Olliec (talk) 08:36, 16 December 2015 (PST)

These are the main PACE trial papers, published to date:

2007 Published protocol:
White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; PACE trial group.
Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy.
BMC Neurol. 2007; 7:6.
http://www.biomedcentral.com/1471-2377/7/6

2011 Main PACE trial paper:
White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M, O'Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M; PACE trial management group.
Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial.
Lancet. 2011; 377:823-36.
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract

2012 Cost-effectiveness analysis (Includes employment and welfare benefits data):
McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, Goldsmith KA, White PD.
Adaptive pacing, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome: A cost-effectiveness analysis.
PLoS ONE 2012; 7:e40808.
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0040808

2013 [Alleged] "Recovery" paper:
White PD, Johnson AL, Goldsmith K, Chalder T, Sharpe MC.
Recovery from chronic fatigue syndrome after treatments given in the PACE trial.
Psychological Medicine 2013; 43:2227-35.
http://journals.cambridge.org/abstract_S0033291713000020

2013 Statistical Analysis Plan:
Walwyn R, Potts L, McCrone P, Johnson AL, DeCesare JC, Baber H, Goldsmith K, Sharpe M, Chalder T, White PD.
A randomised trial of adaptive pacing therapy, cognitive behaviour therapy, graded exercise, and specialist medical care for chronic fatigue syndrome (PACE): statistical analysis plan.
Trials 2013; 14:386.
http://www.trialsjournal.com/content/14/1/386

2014 Adverse events and deterioration:
Dougall D, Johnson A, Goldsmith K, Sharpe M, Angus B, Chalder T, White P.
Adverse events and deterioration reported by participants in the PACE trial of therapies for chronic fatigue syndrome.
J Psychosom Res. 2014; 77:20-6.
http://www.sciencedirect.com/science/article/pii/S0022399914001883

2015 Mediation Analysis (contains the fitness step test results):
Rehabilitative therapies for chronic fatigue syndrome: a secondary mediation analysis of the PACE trial.
Chalder T, Goldsmith KA, White PD, Sharpe M, Pickles AR. (2015)
Lancet Psychiatry 2015; 2:141–52
http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366%2814%2900069-8/abstract

2015 Two Year Follow Up.
Sharpe M, Goldsmith KA, Johnson AL, Chalder T, Walker J, White PD.
Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial.
Published Online: 27 October 2015.
DOI: http://dx.doi.org/10.1016/S2215-0366(15)00317-X |
http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00317-X/fulltext

There are also some minor PACE-related papers:

Lawn T, Kumar P, Knight B, Sharpe M, White PD. (2010)
Psychiatric misdiagnoses in patients with chronic fatigue syndrome.
JRSM Short Rep. 1:28.

Cella M, Sharpe M, Chalder T. (2011)
Measuring disability in patients with chronic fatigue syndrome: reliability and validity of the Work and Social Adjustment Scale.
J Psychosom Res. 71:124-8.

Cella M, White PD, Sharpe M, Chalder T. (2013)
Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome.
Psychological Medicine 43:375-380. doi:10.1017/S0033291712000979

Bourke JH, Johnson AL, Sharpe M, Chalder T, White PD. (2014)
Pain in chronic fatigue syndrome; response to rehabilitative treatments in the PACE trial.
Psychological Medicine 44:1545-52 doi:10.1017/S0033291713002201

Cox D, Burgess M, Chalder T, Sharpe M, White P, Clark L. (2013)
Training, supervision and therapists' adherence to manual-based therapy.
International Journal of Therapy and Rehabilitation 20:180-186.

Narrative[edit source | reply | new]

'I think this page needs a little more narrative (paragraphs rather than bullets). Most notably, it's missing a section about what the trial actually found. It's nearly all controversy and statements against. There is also no information about how the PACE trial authors and Simon Wessely have defended the work or what their position and point of view are. It's important to include to understand the whole picture. Lastly, even if you are going to do a list of quotes from lot of different people, there needs to be an introductory paragraph to that section that explains what hte key criticisms were. Otherwise it's a lot to read and interpret. I am not deleting what comes later in terms of lists of resources but I am trying to include more context up top on the key findings of the trial and key criticisms before launching into the politics/controversy --JenB (talk) 12:11, 13 February 2016 (PST)

Suggestions moved here from the general Suggestions page[edit source | reply | new]

'To make page with all blogs from patients for PACE trial and link to original PACE page

http://www.healthrising.org/blog/2016/08/18/federal-report-says-almost-no-evidence-cbtget-work-chronic-fatigue-syndrome-mecfs/ and and

Tribunal stuff

http://www.meaction.net/2016/08/18/ahrq-agrees-get-useless-cbt-ineffective/

Original stuff

PACE tasks Done?[edit source | reply | new]

http://f1000research.com/articles/5-781/v1 https://twitter.com/postersandme/status/766003841590554625/photo/1

http://www.twitlonger.com/show/n_1sp0pjo https://twitter.com/chezboo2/status/765540769016848384/photo/1 https://twitter.com/cheshfr/status/765606851262222341/photo/1

http://www.meaction.net/2016/09/05/lancet-rejects-scientists-pace-letter/*

http://www.meresearch.org.uk/news/ahrq-review/

https://peterkempblog.wordpress.com/2016/09/10/pace-trial-participants-were-they-exploited/ 

http://www.foxnews.com/health/2011/02/18/pushing-limits-help-chronic-fatigue-patients.html

PACE tasks Done?[edit source | reply | new]

Angela Kennedy[edit source | reply | new]

Have moved Kennedy quotes here as not cited and need more work before can be considered for inclusion.

Angela Kennedy, sociologist and author[edit source | reply | new]

Angela Kennedy has made specific critiques of PACE regarding the following areas: (ref: Summary of my specific concerns about PACE with annotated bibliography)

1. Serious risks to clinical patient safety caused by unsound claims made about the efficacy of CBT and GET following the PACE trial;

2. Gross discrepancies between research and clinical cohorts, and how clinical patients (and the physiological dysfunction associated with them) appear to have been actively excluded from PACE and other research by the research group involved in PACE, which has, ironically, caused serious resulting risks to clinical patient safety in the UK in particular;

3. Related to the above, gross discrepancies in how various sets of patient criteria were used (and/or rejected), including but not limited to a changing of the London criteria by PACE authors from its original state, a set of criteria which was already controversial and problematic to start with for a number of reasons;

4. Failure of the PACE trial authors to acknowledge the range and depth of scientific literature documenting serious physiological dysfunction in patients given diagnoses of ME or CFS, and how CBT and GET approaches may endanger patients in this context;

5. The inclusion of major mental illnesses in the research cohort;

6. The distortion by PACE trial researchers of 'pacing' from an autonomous flexible management strategy for patients into a therapist led Graded Activity approach;

7. The post hoc dismissal of adverse outcomes as irrelevant to the trial, in direct contradiction to what is scientifically known about the physiological dysfunctions of people given diagnoses of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome ;

8. The instability of 'specialist medical care' as a treatment category, and the lack of any sound category of 'control' group.

Olliec (talk) 02:46, 4 March 2016 (PST)

I have reinstated the above summary. It was not in order to completely remove a person's contributions to PACE critique from the main page indefinitely, especially as no clear reason for 'improvement' has been given, and my contribution to PACE critique has been treated differently to others cited here. User:Angela Kennedy
~~I copied over again as the citations did not come up correctly but now do. I am thinking that it is just a matter of formatting to look like all other authors and their information. Perhaps saying "Items 1 through 8 discuss main points of citations." and then indented numbered bullets so that it is obvious the points are from the cited paragraphs. Not sure if this was the issue or not but might be.--DxCFS (talk) 13:27, 21 April 2016 (PDT)
DxCFS (talk)I see. You are citing bullet points from your own blog post. We all know what you state is true, but where are you drawing your conclusions on each bullet point. I know they are really trying to stick to science and scientific conclusions because the future of correct publishing on the PACE trial and appeals in court depend on it.--DxCFS (talk) 13:44, 21 April 2016 (PDT)
I agree with DxCFS and Olliec's general points here. I believe all the others we've cited in that section either have medical credentials, journalistic credentials, or are publishing on behalf of ME/CFS organizations which they represent. I feel that any material we quote should meet one of those criteria. While I know Angela has done a fair bit of work for ME/CFS, I don't know if she actually does meet any of those criteria (Angela: please correct me if you do), and it's usually advised that a person should not substantially edit material that's about them or add material written by them (in short, they should not self-promote). I will fully admit that these criteria are not clearly outlined here, at least not that I'm aware of, but I think if we're going to keep any kind of neutrality to the article, the material published needs to come from an organization or medical/research professional, not just a well-known advocate. – Robin Hood  (talk) 18:22, 21 April 2016 (PDT)
I just noticed the section immediately below the one Angela's currently in about "citizen-scientists". Would that, perhaps, be a more appropriate section to list her under? We'd have to remove the word "patient" from the section heading, since she's an advocate and not a patient, though. Still, given the clear context of the section, I'd even say the current content and reference could go there, since that section clearly implies that the persons listed have no related credentials other than significant experience with the topic. The reference would also be appropriate in that context, since it's what she's written. – Robin Hood  (talk) 11:39, 22 April 2016 (PDT)
That seems appropriate RobinHood. Her page can also have this post and I assume it does. Whether these 8 posts are listed on this page or perhaps it can be stated there are 8 points as the Blog clearly outlines them. Also, it isn't that she isn't correct in her conclusions, it would be helpful if the blog would show exactly how she came to those conclusions. We have been stating points like these but no one cares unless we can show scientifically and statistically just why these claims are not so or have patient interviews listed and referenced even though PACE authors were not required to do the same scientifically, statistically or have patient interviews referenced.--DxCFS (talk) 16:01, 22 April 2016 (PDT)

The summary I've produced gives a list of various publications I've had about PACE, including my book, responses to articles that are there for all to see etc. which sets out key points I have made. In this respect I'm like most of the critics of PACE! If people want to read my points at length to adequately convey my points, then please do so. As regards 'citizen scientists'. I find this a strange division from the so-called 'medical credential' preoccupation. I have an academic qualification, and my field of research is the sociology of science. This does make me 'qualified' enough. By the logic of above comments, a GP with no knowledge of the PACE trial problems is more 'qualified' to be quoted than me, or Tom Kindlon for that matter. It's a flawed dichotomy. There should not be any division. People who have made key points should be listed in the same section. On top of this - I was one of the first people to critique the PACE trial. You need to be putting that history (and not just about me) in this frankly. Hooper, Margaret Williams, Jane Bryant, One Click etc. Angela Kennedy

Suggestions[edit source | reply | new]

Thanks, Suelala! I've just been through doing a few tweaks and adding a load of references.

minor suggestions:

  • use a piped link to allow hyperlink in lower-case, and display text in mixed case, for Cognitive Behavioral Therapy, Graded Exercise Torture, Adaptive Pacing Therapy, etc [I'm afraid I couldn't get my head around this!]

There's plenty more to say about PACE but this is all I can manage and I have to move onto other things now, though I aim to print it off and check again for errors.

Thanks for your help!

Sasha, the last half of the text has been deleted, from 'Controversy' onward - including Requests from Scientists, Petitions, Open Letters, Quotes, FOI requests, etc. is this what you intended ? --Suelala (talk) 00:52, 8 March 2016 (PST)
Hi Sue - I don't understand what you mean but I see you've found me elsewhere - let's carry on the conversation there! :)
Today I have reverted three recent edits to the page (see in View History) as the oldest of those three edits deleted most of the page content. The edits since then have been reverted and lost, but they still show in the log so can be manually re-applied. Please be careful when editing (use Preview) to make sure the page remains intact. Olliec (talk) 02:04, 8 March 2016 (PST)

Comments on various sections by Sasha[edit source | reply | new]

Media section[edit source | reply | new]

Just doing a sweep-through to remove my editorialising (that was me in those early sections, sorry!) from the front end. With those particular spectacles on, I see there's some stuff in the Media section that's critical of some of the media coverage (the Chalder comment, the alteration of the Telegraph article, the SMC) and I wondered where the best place is to introduce the controversy over the media coverage.

I think that now that there's some media coverage supporting patients' criticism (e.g. WSJ), that should be included.

Don't know how to handle this issue but wanted to raise it for the the folks dealing with this section. Sasha Anonymous 09:08, 9 March 2016

Research and treatment section[edit source | reply | new]

This section also goes into criticism and goes beyond PACE to a wider consideration and critique of the Oxford studies. I think it's better to narrow the focus back to PACE and to mention that PACE is the reason the NICE guidelines are on the static list.

But in case people disagree, I'm parking the text I'm replacing with the original:

Note: text removed, as it can always be recovered from the article's history. – Robin Hood  (talk) 18:10, 21 April 2016 (PDT)

Neutrality[edit source | reply | new]

I worry that the previously neutral, encyclopedic tone of this page has become increasingly skeptical. I think it's better to keep tone neutral and slowly build argument in the appropriate sections (e.g., criticism, controversy) rather than editorializing from the start. We hope for a broad audience, including readers who might find an approach with a strong perspective less credible. For example, the "findings" section contains several implicit and explicit critiques that should be probably be saved for the "criticisms" section. It's important to let the reader first learn what it is that the PACE trial actually says before presenting the criticism and controversy --JenB (talk) 21:55, 6 March 2016 (PST)

This may be helpful: https://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_view It doesn't mean that we can't include all the criticisms and all the controversy, but the sections that are for describing what the PACE trial said and found should be kept neutral and state just those facts – to be refuted in the following sections. --JenB (talk) 22:14, 6 March 2016 (PST)

Cleanup[edit source | reply | new]

I've attempted to clean this talk page up a bit. I haven't fully changed it to traditional talk-page format (due to overlapping edits, what appear to be deliberate insertions, requests for deletion, etc.) but it should be at least close to what the author(s) intended. The only significant change I made to content was to remove Sasha's copy of the "Research and treatment" section, as this can readily be recovered from the article history. On a lesser note, I removed a duplicate reference in the Angela Kennedy section and changed it to not be a reference, just so it's easier to deal with here on the talk page. I also changed multiple dashes as a separator to only four, since that will generate a separator line, regardless of page width. – Robin Hood  (talk) 18:10, 21 April 2016 (PDT)

Blog post on the involvement of many institutions[edit source | reply | new]

I thought this point made by Disabled in Tory Britain was valid but not certain where to post on the page. This is from the diary post Diary Day 116: Will Publishing The CFSME PACE Trial Data Topple The NHS?

If that scenario happens, what will that mean for: 

   UK Medical Research Council
   Department of Health
   the Scottish Chief Scientist’s Office
   The Department for Work and Pensions
   The Wolfson Institute
   Queen Mary University
   3 London hospitals
   1 Oxford hospital
   1 Edinburgh hospital
   The ethics committee who passed the research protocol?

Look at that list…..take one long hard look. They worked together, not alone. They were one body, not separate. They were the partners that brough the PACE trial to its conclusion and the NHS worked on their recommendations.

Will just leave this post here for now. : ) --DxCFS (talk) 08:45, 2 September 2016 (PDT)

NEUTRALITY[edit source | reply | new]

"Neutrality[edit] I worry that the previously neutral, encyclopedic tone of this page has become increasingly skeptical. I think it's better to keep tone neutral and slowly build argument in the appropriate sections (e.g., criticism, controversy) rather than editorializing from the start. We hope for a broad audience, including readers who might find an approach with a strong perspective less credible. For example, the "findings" section contains several implicit and explicit critiques that should be probably be saved for the "criticisms" section. It's important to let the reader first learn what it is that the PACE trial actually says before presenting the criticism and controversy --JenB (talk) 21:55, 6 March 2016 (PST)

This may be helpful: https://en.wikipedia.org/wiki/Wikipedia:Neutral_point_of_view It doesn't mean that we can't include all the criticisms and all the controversy, but the sections that are for describing what the PACE trial said and found should be kept neutral and state just those facts – to be refuted in the following sections. --JenB (talk) 22:14, 6 March 2016 (PST)"

AGREED! we need info that is convincing to the generally sceptic general public (I'm a CFS sufferer)


Trial By Error[edit source | reply | new]

Just moving the Trial By Error articles here as it now has its own page and I put in a template. Trial by Error Series

--MEcfsFMS (talk) 21:27, August 17, 2018 (EDT)

Completed[edit source | reply | new]

Move tasks and suggestions here when fully implemented

Separate page on intimidation of PACE critics[edit source | reply | new]

I created a separate page to document this behaviour by the PACE trial apologists. The page needs more work by an experienced editor and better writer.

https://www.me-pedia.org/wiki/Intimidation_of_PACE_critics

Trial By Error has its own page[edit source | reply | new]

Trial By Error has its own MAIN PAGE and it David Tuller's series was not being kept up on this page so I created a MAIN PAGE direct for the series. I did this before and it was moved back and then not kept up and it makes the page unnecessarily long anyway.--77.111.245.24 10:09, 24 February 2019 (EST)

This article is too long[edit source | reply | new]

I think that this article is too long. It gets laggy when I edit it, which is probably due to the length.

It would probably be best if some sections were reduced and put into their own articles or other articles, and then be linked to in the appropriate sections. These could include sections such as the "Scientific and Media response", which is just a list of links, or the list of publications by David Tuller. Potentially the list of quotes from critics could be moved into a different article too, although they're important so that may not be the best move. Maybe the "Calls to release data" section could also be reduced and the full content be moved into a separate article. Are there any thoughts on this? --Pwc (talk) 09:15, July 20, 2022 (UTC)

In my view the "Criticisms of the study" section should be longer, since it doesn't include all of the criticisms of the PACE trial, and the rest of the article should be more condensed. I find the organization of the rest of the article confusing and difficult to follow. --Pwc (talk) 04:54, August 3, 2022 (UTC)

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

See ME/CFS.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

randomized controlled trial (RCT) - A trial in which participants are randomly assigned to two groups, with one group receiving the treatment being studied and a control or comparison group receiving a sham treatment, placebo, or comparison treatment.

cognition Thought processes, including attention, reasoning, and memory.

cognition Thought processes, including attention, reasoning, and memory.

See Agency for Healthcare Research and Quality.

Agency for Healthcare Research and Quality (AHRQ) - Agency for Healthcare Research and Quality is a United States government agency under the U.S. Department of Health and Human Services. Their mission is "to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable. A representative of the Agency for Healthcare Research and Quality sat on the (now disbanded) CFSAC committee as an Ex Officio Member.

The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

biopsychosocial model (BPS) - A school of thought, usually based in psychology, which claims illness and disease to be the result of the intermingling of biological, psychological and social causes. (Learn more: me-pedia.org)

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

microbiome The full collection of microscopic organisms (especially bacteria and fungi) which are present in a particular environment, particularly inside the human body.

Concerning living organisms, such as cells or the human body.[1]  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

physiological Concerning living organisms, such as cells or the human body.  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

pacing The practice of staying within one's "energy envelope" or personal limit by combining periods of activity with periods of rest or avoiding exerting beyond a certain level. ME/CFS patients use pacing to avoid or reduce post-exertional malaise (PEM). Some patients use a heart rate monitor to help with pacing.

NICE guidelines Clinical guidelines used in the UK.

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