Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

I saw this post some time ago:
Are People ME/CFS Now Being Diagnosed With FND Instead?
I have been reading posts on here and I can't help but think that some people are being a diagnosis of FND when they may have ME/CFS ( Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) . The problem is many UK neurologist don't recognise ME/CFS as a organic illness and are prone to think it's a functional illness. This is despite a lot of evidence that shows biological problems in ME/CFS. There are over 5,000 papers that show biological changes in people with ME/CFS including immune problems, mitochondrial dysfunction, muscle dysfunction ( Prof Julia Newton in Newcastle has shown muscle in people with ME/CFS produce 20x more lactic acid than normal controls) and measurable cognitive problems. There are many more things that have been found to abnormal, this is just a few of them. There are different severities of ME/CFS from those who can still work to those at the severe end who are bed bound. About 25% of patients are severely affected.

In some ways it doesn't matter as ME/CFS isn't curable. The only treatment available is CBT and GET (Graded Exercise Therapy). The recent much trumpeted PACE trials claimed to show CBT as being effective, however no one recovered back to normal. All the measurements that showed improvement were subjective. The only objective measure, the 6 minute walk test show that those they claimed to have cured were still very disabled. It also ignores the fact that many people with ME/CFS have been made worse by CBT and GET! Some of gone from being able to work before the treatments to being bed bound afterwards. The PACE trial is reference by doctors treating FND, the results weren't as good as the psychiatrist who did the trial have tried to make out. So the supposed treatment for ME/CFS is the same for FND.
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rest of post here (from 2015)
https://healthunlocked.com/fndhope/...e-me-cfs-now-being-diagnosed-with-fnd-instead
 
a problem with nervous system functioning
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Ah yes, I see. I knew I had something, and that'll do to wave at the wife's family. I'm so grateful that someone finally found out what it was.

adambeyoncelowe said:
I saw it too. I banged my head against a brick wall for a while afterwards.
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That's actually quite a good therapy. Trials which ask participants to fill in a questionnaire about how they feel when it stops have proved this.
 
Sly Saint said:
maybe there should be a separate thread on FND(?)
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I'm not sure what to make of this twitter account, @Slysaint. Seems to take a strong stance against psychotropic drugs, advocating that at least mildly distressed people can get better with talking therapy.

It also advances the idea that MUSs are caused by psychotropic drugs. That's an interesting idea, but doesn't explain cases with no history of psychotropic drugs.

What do you think?
 


Thursday, June 07, 2018
Chronic fatigue: even if it's in The Lancet, it deserves reproduction of the test... surprise!
The journals publish innovations before competitors! Articles are accepted without well see if the criteria of judgment of the manuscript are those of the Protocol... officially since 2004, these journals publish only research protocols have been recorded. Registration does not mean comparison of criteria between protocols and articles.

The Repligate (see post from yesterday) helped to develop certain disciplines, and publication in BMC Psychology, in 2018, an article whose title is " Rethinking the treament of chronic fatigue syndrome - a reanalysis and. "assessment of findings from a recent major trial of graded exercise and CBT " confirms the need to reproduce publications, even those of the Lancet...

This article was reported to me by Thomas Kesteman thank, and I borrowed some comments from his email. I read with pleasure this huge work and feels that he was did not in cooperation with the original researchers... Since the data were obtained through the Freedom of information act.

Test PACE was published in The Lancet in 2011. 641 English patients with chronic fatigue syndrome, divided into 4 groups: specialist medical care (SMC) was the group control with usual care; the other 3 groups had usual care and more intervention, or APT for 'adaptive pacing therapy', either CBT for 'cognitive behaviour therapy', or GET to 'graded exercise therapy'. You will see the details in the Protocol. The conclusion was clear: "CBT and GET can safely be added to SCM to moderately improve outcomes for chronic fatigue syndrome, but APT is not year effective addition". The stats worked well! The notoriety of this article has been good, and he has been cited 397 times, which is a lot. There is even a video of 1 min 48 sec with interview of an author on The Lancet...

I quote T Kesteman, and I push you to read the discussion of article: the authors have not confirmed the initial results. History is nice because it is exemplary of how science should unfold: neurologists have launched a randomized trial to evaluate the efficacy of management by psychotherapy behavioural exercise vs vs supported conventional. So they included patients from 2005 to 2008 and followed until 2010; Meanwhile they published their protocol in 2007, then published in the Lancet in 2011: interventions were effective (moderately), which apparently made big noise in the profession (which is not mine). Other authors have noted that they had not followed to the letter their own protocol, especially concerns the main outcomes, which have been recover data that have been made available through the Freedom of information act. They Redid the analysis and do not confirm that these interventions work.

The article shows that the main judgment criteria have been changed under study, with a good protocol recorded, but after the inclusion of the sick! Table 1 compares the original Protocol criteria and those of the Lancet manuscript! edifying! In fact the article was very discussed in The Lancet of first, then this change of criteria discussed in 2013 in letters published in The Bmj... Because The lancet is silent! A lot of discussions, but nobody had reanalyzed with the initial criteria of the Protocol!

"The conclusion in BMC Psychology:"These findings raise serious concerns about the robustness of the claims made about the efficacy of CBT and GET. The modest treatment effects obtained we self-report measures in the PACE trial do not exceed what could be reasonably accounted for by participant reporting biases."

I'm not an expert on the subject but I have some questions:

  • What about recommendations on the care of chronic fatigue? were they taken into account PACE in The Lancet?
  • the concept of threaded papers, proposed by Doug Altman, nobody cares: would want to tie all these items!Is it normal to have in The lancet and in MEDLINE/PubMed article PACE in 2011 with no links to other articles on this study?
  • the image comes from PubMed with links to the Lancet articles, but not to the BMJ, or BMC emotional letter!
  • referring to PACE on The Lancet, there are many related articles, but all refer to publications of the Lancet group!
 
Tom Kindlon said:


Thursday, June 07, 2018
Chronic fatigue: even if it's in The Lancet, it deserves reproduction of the test... surprise!
The journals publish innovations before competitors! Articles are accepted without well see if the criteria of judgment of the manuscript are those of the Protocol... officially since 2004, these journals publish only research protocols have been recorded. Registration does not mean comparison of criteria between protocols and articles.
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Wow, that's the first time I see a discussion of the PACE trial on a French medical blog.
 
Tom Kindlon said:
I decided to Google the study to see where it was mentioned. Here is a blog post:

A comment on the conclusion: Just because people may be somewhat deconditioned doesn't mean that they will be able to get better with graded activity/exercise before the underlying cause is dealt with.
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Exactly. If you end up deconditioned because you someone tied you to a bed, no amount of CBT/GET is going to untie the straps for you.
 
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