A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

Daisymay

Daisymay

Senior Member (Voting Rights)
Professor Hooper’s peer-review comments were written to indicate the accurate situation that now obtains concerning the PACE trial raw data. People can judge for themselves if his comments were accepted by the BMJ by looking at their updated version of “Best Practice on CFS” released in September 2018. ( https://bestpractice.bmj.com/topics/en-gb/277/ )


http://www.margaretwilliams.me/2018/hooper-review-bmj-best-practice-on-cfs.pdf

A Review of BMJ Best Practice Document on Chronic Fatigue Syndrome by Professor James Baraniuk

Professor Malcolm Hooper 24th June 2018

NOTE: I was asked by the BMJ Section Editor (BMJ Best Practice and BMJ Learning) to provide a peer review of Professor James Baraniuk’s document on “CFS”, to which I agreed. My comments below relate to the version sent to me. In my opinion, it indicated how dangerous the medical education programme about ME/CFS is in the UK. This was borne out by my face-to-face discussion with Professor Baraniuk himself on 1st June 2018 in London: he confirmed to me that his original report had already been sent by the BMJ to other referees and that he had received 156 comments which he was instructed had to be incorporated in his report. It was plainly obvious that those comments had been included in the version sent to me. Professor Baraniuk assured me that I should go ahead and respond as I wished, so it seems he knew his report was not as he intended it to be. In telephone discussions with the BMJ Section Editor, it was stressed to me that the BMJ had to have (quote) “equality”.
 
Sasha said:
Much as I appreciate the effort that clearly went into this, I think that at 18 pages, this is only likely to be read by the ultra-keen and therefore not the ideal advocacy document.
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7 pages (of actual review material) of an extremely well thought through review, shows just what a mess it was that he had to review.

In 1992 the term “CFS” was included in ICD-10 as a synonym for ME (referable only to ME at G93.3), but in the UK, a group of psychiatrists intended to eradicate the neurological disease ME and introduced the term “CFS/ME” (in that order, as distinct from “ME/CFS”) with their stated intention of dropping “ME” from “CFS/ME” when expedient and then reclassifying “CFS” as a behavioural disorder (BMJ 2003:326:595-597).
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Now that is as succinct and legible a summing up of that aspect you could hope for I think.

Excellent review!
 
It is largely good, and very worrying that the best practice document is so wrong.

But this part concerns me:

Clinically, ME is a separate disorder from what is now termed CFS or “CFS/ME”: ME is a recognisable post-enteroviral disease with specific features; it may also follow vaccinations (for which significant evidence already exists and more evidence is emerging). However, there are a number of states of chronic fatigue which now fall under the “CFS/ME” umbrella and the resultant confusion is responsible for the heterogeneity of the patient population and hence the diverse research findings.
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As I understand it we do not have evidence that ME/CFS is always and only a post enteroviral or post vaccination disease. Many of us fit all the definitions including CCC, yet our ME started after a different type of infection. I am concerned at this narrowing of the possible causes of ME.

I am also concerned that his list of biological evidence is not all fully replicated and accurate. Overstating the case may lead to dismissal of his arguments.

However, he is right about this:

The term “CFS/ME” now has come to mean a behavioural disorder and this report repeatedly portrays CFS as deconditioning which can be effectively treated by cognitive behavioural therapy (CBT) and graded exercise therapy (GET), but there is no evidence whatsoever of deconditioning in patients with ME/CFS. If this whole document is not based on ME/CFS as a neurological/neuroimmune disorder, then it is falsely grounded.
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In skim-only mode, but just saw that on the BMJ Best Practice website presenting Baraniuk's summary both the IOM Report (2015) and the CDC‘s recommendations on "Symptoms and Diagnosis" are linked as "guidelines" on the right side. In the category "resources" the guideline section is only accessible with subscription, though.

Also, the "patients‘ leaflets" linked on the right side, one on "Chronic Fatigue Syndrome" and one on "Depression in Adults", are only accessible with subscription.

Could anyone who has access to "BMJ Best Practice" give us some information about the guidelines, patient leaflets and "evidence" presented as "resources" for "Best Practice" for "CFS/ME"? (documents' titles, authors?)

Edit: Just realized that this thread's topic is Hooper's review, not the BMJ Best Practice content per se, so I'll copy my post on the thread "Sources of online information for medical professionals".

Edit 2: correct link to the other thread
 
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Notwithstanding Charles Shepherd's comments I think this is pretty good on a moderately quick skim through the PDF. It's a fairly long document, though about half are references. That probably means it's only going to be read by a professional invested in the area. I doubt most GPs would get far through it, but I may be wrong.

The sections on possible causes etc seem fine — lots of biological findings and theories, but we don't yet know. I enclose one subsection in treatments —

Treatment controversies and uncertainties: graded exercise therapy (GET)

Historically, treatment has been complicated by strong differences in opinion between people with ME/ CFS and their support groups compared with medical specialists, as well as differences in opinion among specialists.[184] [185] Further complexity has arisen owing to a historical lack of consensus about ME/ CFS diagnostic criteria and about treatment approaches across Europe and around the world.[186]

Although previous randomised controlled trials (RCTs) have reported benefits to structured GET in the management of ME/CFS, a re-analysis by Cochrane in 2019 highlighted the presence of methodological flaws. Concerns about the potential for iatrogenic harm with GET have been noted, owing to inadequate reporting of harms within RCTs.[187] [188] [189]

The possibility of iatrogenic harm with GET is supported by results of 2-day maximal exercise stress tests, where ME/CFS patients do well on the first day, but have reduced cardiopulmonary function on the second day, followed by exacerbation of fatigue and other ME/CFS symptoms.[111] [164] Graded exercise may be particularly counter-productive in severe and/or bed-bound ME/CFS because the treatment may induce post-exertional malaise (PEM) and prolonged exercise-induced exacerbations.

Dissenting opinion about the safety and efficacy of GET has led to uncertainty among clinicians as to how best to support patients in safely managing their activity and exercise levels. Fundamental gaps in the evidence regarding GET in ME/CFS remain, and a full update of the Cochrane review is currently in progress.[190]

Based on these concerns, GET is no longer recommended as a treatment for ME/CFS by the NICE guidelines, or by the US Centers for Disease Control and Prevention (CDC).[8] [191] With respect to this decision, the NICE guideline development committee cites reports of harm in the qualitative evidence, as well as the committee's experience of the effects when people exceed their energy limit.[8]

Many patients and clinicians now favour an alternative approach to managing activity levels in ME/CFS, referred to as ‘energy management’ or ‘pacing’, which involves carefully planning activities and rest to avoid overexertion (PEM). Note that energy management is intended as a possible coping strategy for people with ME/CFS, rather than as a curative therapy. The evidence for energy management is largely anecdotal, based on patient experience and clinical observation. This approach is supported by NICE in the UK, as well as by the CDC and the National Institutes of Health (NIH) in the US, and the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE).[8] [10][145] [192] NICE emphasises the importance in the absence of clinical consensus to provide clarity of information and clear guidance around energy management, physical activity, and exercise to people with ME/CFS; this topic aligns with this pragmatic approach.[8]

Note: NICE defines graded exercise therapy as "establishing a baseline of achievable exercise or physical activity and then making fixed incremental increases in the time spent being physically active. It is a therapy based on the deconditioning and exercise avoidance theories of ME/CFS." In practice, some patients with ME/CFS may tolerate a carefully individualised activity plan developed in collaboration with knowledgeable and experienced professionals: for example, those who feel ready to progress their physical activity beyond their current levels, and/or those who would like to incorporate physical activity or exercise into managing their ME/CS.[23] The activity plan must aim to minimise the negative effects of exertion on impaired aerobic and cognitive function. See the section Multidisciplinary support.
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The section on CBT skates the line a bit, but seems adequately NICE-compliant in terms of being supportive not curative.
 
SNT Gatchaman said:
Notwithstanding Charles Shepherd's comments I think this is pretty good on a moderately quick skim through the PDF. It's a fairly long document, though about half are references. That probably means it's only going to be read by a professional invested in the area. I doubt most GPs would get far through it, but I may be wrong.

The sections on possible causes etc seem fine — lots of biological findings and theories, but we don't yet know. I enclose one subsection in treatments —



The section on CBT skates the line a bit, but seems adequately NICE-compliant in terms of being supportive not curative.
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it blurs over how in the strong difference of opinion, what clinicians and patients “now” agree on is that patients and their advocates/ most charities were right all along. The word harm is used without acknowledgement that that “harm” extends to accounting for why many of the patients who are house and bedbound are so.
 
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Although previous randomised controlled trials (RCTs) have reported benefits to structured GET in the management of ME/CFS, a re-analysis by Cochrane in 2019 highlighted the presence of methodological flaws. Concerns about the potential for iatrogenic harm with GET have been noted, owing to inadequate reporting of harms within RCTs.[187] [188] [189]
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This makes the Cochrane 2019 review much better than it is. It's seriously flawed.

Graded exercise may be particularly counter-productive in severe and/or bed-bound ME/CFS because the treatment may induce post-exertional malaise (PEM) and prolonged exercise-induced exacerbations.
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This in particular is seriously harmful misinformation. GET is bad for everyone regardless of severity levels. We all get PEM and can detriorate long term with GET.
 
Although previous randomised controlled trials (RCTs) have reported benefits to structured GET in the management of ME/CFS,...​

If anything, the body of studies on GET from the psycho-behavioural club are characterised by their persistent lack of adequate control.

They have also not reported any practical meaningful benefits.

Many patients and clinicians now favour an alternative approach to managing activity levels in ME/CFS, referred to as ‘energy management’ or ‘pacing’, which involves carefully planning activities...​

Yeah, ha ha. Good one.

These guys just don't get it yet, do they.
 
Many patients and clinicians now favour an alternative approach to managing activity levels in ME/CFS, referred to as ‘energy management’ or ‘pacing’, which involves carefully planning activities and rest to avoid overexertion (PEM). Note that energy management is intended as a possible coping strategy for people with ME/CFS, rather than as a curative therapy. The evidence for energy management is largely anecdotal, based on patient experience and clinical observation.
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I don't like that description of pacing. as 'carefully planning activities to avoid overexertion (PEM)'. PEM is not overexertion, it's a consequence of overexertion. And however carefully we plan, the key is symptom contingent pacing, not plan contingent pacing. Also we can't plan completely, as exertion thresholds are not fixed.
Also whatever we do is 'energy management' whether we do it by resting all the time or over exerting too much. So it's about doing what we can to avoid triggering PEM too often and too severely. Everyone in the world does 'energy management' and for most people it's fine however they choose to manage their energy. The difference for pwME is that if we don't manage it by restricting activity, we get much sicker.
 
Trish said:
'carefully planning activities to avoid overexertion (PEM)'
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It's also a bit slippery, because 'activities' really means entire existence.

It's good that professionals are now using activity where they'd once have used exercise, but in a sentence like this, it still manages to convey a sense of voluntary activity. It wouldn't make anyone think that planning might involve not eating fresh salad because you haven't the energy to chew it.
 
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