BMJ editorial: Updated NICE Guideline on chronic fatigue syndrome, 2020, Stokes and Wade

Barry said:
Note she says "many patients do recover from chronic fatigue symptoms", not syndrome.

For a good few years I had symptoms of chronic fatigue, and eventually got through it, but am certain I never suffered from ME/CFS; indeed when I saw a doctor they never even mentioned ME/CFS to me. I can say this confidently because my wife has ME/CFS, and although there is some symptom overlap, my case lacked PEM, and there was not the shattering physical exhaustion like my wife gets, even though I used to feel very "heady" and listless. People with the sort of condition I had (chronic fatigue, not chronic fatigue syndrome) very likely do have a good chance of recovering, and indeed it was exercise that helped me to do that. But I never suffered from an abnormal physiological intolerance to exercise, ever!

So yes, their clinics may well be helping people suffering from simple chronic fatigue, whose condition is not rooted in a physiological intolerance to exercise, but they must stop pretending it is ME/CFS they are treating! But the new NICE guideline is not about those patients at all! It is about people who do have ME/CFS, whose condition is rooted in an abnormal physiological intolerance to exercise.

The huge problem with people like LTS is they do not recognise, maybe cannot even comprehend, the major distinction between the two illness groups, normal tolerance to exercise on the one hand (chronic fatigue), versus abnormal intolerance to exercise on the other hand (ME/CFS).
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That's a very good point. The Nice guidelines are not for chronic fatigue! Why should they be allowed to put ME/Cfs folks into severe illness for a chronic fatigue policy that has no greater benifit to chronic fatigue, that time and your own urge to do things wouldn't do anyway.
Also if it was only a tiny minority of militant patients trying to stop them where is the large patient campaign group trying to make sure these services continue, if they're so fabulous!!!. It's notable that those patients cured by such methods just don't exist in any notable numbers. More often than not they appear to be ghost patients that are often mentioned but have no evidence of actual existence.
 
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A look back at the comments about PACE being "the definitive test" is really warranted here, pointing out the incredible hypocrisy on display. These people are so completely full of it but a system that does not see any problems with a complete lack of integrity and consistency is a whole other set of compounding problems.

In the SMC PR release about PACE, it is all over the place that PACE was THE DEFINITIVE TEST TO END ALL TESTS of this paradigm. They said it precisely because it was an RCT (nevermind it was only a randomized trial come on people it's literally in the title). Seriously on that last point it's amazing that the SMC put out an "expert" reaction with basic factual errors about the very topic being promoted. Wade gushes about how randomized controlled trials are amazing, while talking about something that was not a controlled trial. There's simply no quality control or oversight or anything normal happening here. No one is bothered by glaring factual mistakes.

The downplaying of PACE as just another trial really should have been pushed back. It was massively expensive and promoted as the end all be all, the definitive test, the one true final exam. And after they were forced to admit it failed? Oh, that little trial among many others? Not significant.

It's an incredible failure that almost no one objects to this, or even plays along with it. It takes the entire institution of medicine to fail here, to make up imaginary goals then walking back ever having made those goals in the first place when it fails despite a public record going back years. This set the stage for the... CODES?... trial which failed in its primary outcome of reducing seizures and they simply argue it was never the intent after having spent years, YEARS, insisting this was the only useful outcome. And nobody cares that they completely reversed themselves. KCL doesn't. SMC doesn't. NHS doesn't. Only us do, about obvious basic mistakes.

It's when the system doesn't care about these things that failure occurs. It's not just that people failed, it's the failure was simply whitewashed by the entire system. If the medical system doesn't care about correcting its failures, the entire premise of the system has failed until this is addressed.
 
Ben Marsh raises a good point. Isn't it political interference to issue an editorial criticising a NICE proposal during consultation?

OK we have free speech and if NICE had been biased by a group with vested interests then it would be right and proper for a journal to cry foul. But that would have been the situation last time around. This time it is the reverse, those with the vested interests are writing the editorial criticising not on the basis that there were vested interests but on, er, the basis, of, er, arguments that are a bit hard to follow seemingly dismissive of patients.
 
Jonathan Edwards said:
The authors appear to assume that we can know that therapist-delivered treatments are effective on clinical practice grounds.
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If this were true then clinical trials would often be unnecessary, and we could just take the word of those in clinical practice. Probably akin to how things were done hundreds of years ago.

There must be all manner of biases that can creep in at the level of clinical practice. e.g. Assuming patients recovered/improved if they do not follow up; patients learning to manage their condition better themselves; biased interpretations of patients self reports; spontaneous improvement; misdiagnoses; not recognising harms for what they are; etc.

The risk of self fulfilling success stories is presumably high ... "how can we know patient A is improved?" ... "well, we know from experience that when a patient behaves in x, y, z fashion it is because they have improved, and this patient's behaviour is x, y , z." Which further reinforces the bank of spurious "evidence".
 
Footnotes
Competing interests: The BMJ has judged that there are no disqualifying financial ties to commercial companies. The authors declare no other interests. The BMJ policy on financial interests is here: https://www.bmj.com/sites/default/f...2016/03/16-current-bmj-education-coi-form.pdf.
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This seems quite sneaky. The BMJ very carefully qualifies that they judge there to be no disqualifying financial ties. And they carefully point out that where to find their policy on financial interests. But that is highly misleading (deliberately so I suspect), because their policy linked to is their "BMJ policy on declaration of interests", which explicitly covers both financial and non-financial interests!

So the BMJ is implicitly saying it has excluded non-financial interests from its judgement, even though it has a policy which includes non-financial interests.
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Seems really hooky, and blatantly so.

ETA: To me this is a tacit but clear admission by the BMJ that there is a non-financial conflict of interest. Else why specifically confine their comment to financial COI?
 
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The strong beliefs in the treatment exhibited by CBT/GET proponents do not show that we can do without controlled clinical trials but that bias-proof clinical trials are especially important.

Strong beliefs could be a result of the treatment being very effective, but they could also be what enables a person to overlook problems with a treatment.

The bias is in the patient's and investigators hopes, fears, beliefs, conflicts of interest and so on. The more these are evident, the greater the risk of bias distorting the clinical trial outcomes.
 
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EDIT: I have now submitted this as a rapid response. You can read it here:
Thanks to all who made suggestions and corrections. https://www.bmj.com/content/371/bmj.m4774/rapid-responses

Plan to submit the following rapid response, comments are welcome:


The recent editorial by Turner-Stokes and Wade on NICE guidance on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) includes several problematic statements....
 
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Michiel Tack said:
Turner-Stokes and Wade also write that “many patients do recover from chronic fatigue symptoms” despite a systematic review on the prognosis of ME/CFS indicating low recovery rates with a median of only 5 percent.
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Worth highlighting that they talk of "chronic fatigue symptoms", not "symptoms of chronic fatigue syndrome"?

Perhaps something like "Turner-Stokes and Wade also write that “many patients do recover from chronic fatigue symptoms”; should they mean "symptoms of chronic fatigue syndrome", the subject of the draft guideline, then a systematic review on the prognosis of ME/CFS indicates low recovery rates with a median of only 5 percent."
 
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