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

Box 1
Quality criteria that are poorly applicable to complex condition
  • Objective outcome measures—This favours physiological or standardised performance measures. Patient-reported outcomes such as pain, distress, and function in their daily lives are downgraded as “subjective” despite their widely accepted clinical importance.
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The dichotomy between objective and subjective outcome measures that Stokes & Wade attempt to set up here is a false one.

Objective outcome measures do not necessarily favour physical function, they help validate or infirm patient-reported outcomes. Reducing the uncertainty around these subjective outcomes enables better taking them into account, which upgrades their value, not downgrades it... Certainly a clinician prefers knowing whether a treatment they prescribe benefits their patients beyond a placebo effect.

And when a patient experiences a gain in physical function (one that can objectively be measured) thanks to an effective treatment, then they would generally report less distress and increased function in their daily lives.

Maybe the authors would benefit, as an example, from reading James Coyne's recent blog post "Placebos Can Fool Your Mind, but Not Your Body" (S4ME discussion thread).
 
Barry said:
ETA: By this I mean that there will always be a small % of people who are not ill and seek to work the system, and if LTS and the like focus on people like this to try and "prove" a supposed point, it's just plain weird.
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Yep. This is true but of those people how many would choose an illness where they won't be believed anyway? Why would you choose the one illness (that I can think of anyway) where they'll try to insist you push through.

The illness that has commonly been seen as a person just being weak or lazy or whatever.

If I was swinging the lead I would never have chosen ME.
 
Jonathan Edwards said:
I am quite shocked that this is an editorial. Normally a politically fired piece like this would be Point of View or a letter. Editorials can deal with quirky ideas but if they put forward a political view on policy they have to be assumed to represent the view of the editor. Does the editor really want to be associated with such a muddle of self-contradictory ill-informed ideas? Maybe.
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Maybe there are other factors at play here e.g. the folks who benefit from the current system are important to BMJ. But yes, if this is crap then highlight that.
 
Tom Kindlon said:
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The huge problem being of course, that when patients are offered treatments, the patient may not understand the implications - good or bad - of that treatment. It is why they consult an expert, and often rely heavily on the consultant's expert advice on the safety and efficacy of such a treatment. This is fine if the consultant is properly qualified to offer such advice, and is wholly unbiased. So many 'if's implicit in here ...
 
Invisible Woman said:
Yep. This is true but of those people how many would choose an illness where they won't be believed anyway? Why would you choose the one illness (that I can think of anyway) where they'll try to insist you push through.

The illness that has commonly been seen as a person just being weak or lazy or whatever.

If I was swinging the lead I would never have chosen ME.
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Yes, that is very true.
 
Invisible Woman said:
This change in attitude away from rehabilitative interventions is worrying, as many patients do recover from chronic fatigue symptoms.
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Does she define recovery anywhere?

Is this recovery where you can be worse off than when you started?
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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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Jonathan Edwards said:
Isn't it extraordinarily insulting to refer to those who put together the harms observations as a few 'service users' - like the pesky people who leave garbage on public transport. Matronising at its most egregious.
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It is pretty classic though, and part of their modus operandi. If you cannot win an argument legitimately, then instead employ an oblique ad hominem attack by attaching a belittling/derogatory/dismissive label to your opponent, in an effort to subvert their credibility.
 
Caroline Struthers said:
Would you consider doing a rapid response? I have only managed a Tweet....
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I am trying to draft something.

What do people think of this:


Dear Editor,

I am sorry to say that I think the recent editorial [1] on the draft NICE guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is unsubstantiated, confused and unhelpful.

Having been involved in the guideline process as an expert witness I am confident that the downgrading of quality of evidence for therapist-delivered treatments for ME/CFS was not a result of the well-recognised failings of the GRADE system. If anything GRADE makes it difficult to adequately downgrade very poor randomised studies. The committee found a sensible way to do so [2].

Further arguments raised by Turner-Stokes and Wade about evidence quality are puzzling and contradictory. They say the evidence for efficacy of therapist-delivered modalities is good. Yet they point out that the types of trial available for evaluation are not appropriate. Such trials cannot be blinded (they note), so with subjective endpoints are hopelessly at risk of expectation bias. As I pointed out in my written testimony to the guideline committee [3], you cannot say that if the best you can do falls short of reliability you can treat it as reliable. Turner-Stokes and Wade must surely be arguing that NICE made the right decision.

There is also an accusation (unsubstantiated) that NICE was swayed by qualitative evidence from patients, ignoring the fact that the bar for evidence is set lower for harm than efficacy. Further confusion then comes when the authors say they think we need new forms of assessment – which appear to rest on qualitative uncontrolled observations of patients. This reinforces the agreed point, made cogently by Geraghty [4], that we need new types of trial design because the traditional format has failed, but surely not falling back on uncontrolled clinical practice accounts.

The authors appear to assume that we can know that therapist-delivered treatments are effective on clinical practice grounds. Yet, as I explained in my verbal testimony to NICE, the available trials show that any benefits, even if due to more than expectation bias, would be impossible to separate from spontaneous improvement in clinical practice. Unfortunately, the presumption that the benefits of rehabilitative treatments can be reliably identified in routine practice is ingrained into the sector. The trials have shown that it is unjustified.

It was because of the impact of this muddled type of thinking from a small group of service providers that it was decided to review the ME/CFS guidelines. The draft proposals look to be an enormous improvement to the very large patient community interested in the quality of the science. What is particularly important now is that muddled thinking is not used to justify ‘rehabilitation’ of people with persistent unexplained symptoms after Covid-19 infection. We have no reason to think that post-viral syndromes are likely to benefit from anything other than time and not trying to do too much.

References

1. Turner-Stokes, L. and Wade, D. (2020). Updated NICE guidance on chronic fatigue syndrome. BMJ, 371, m4774.

https://www-bmj-com.libproxy.ucl.ac.uk/content/371/bmj.m4774

2. National Institute for Health and Care Excellence. (2020). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. Draft guidance consultation.

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091/consultation/html-content-2

3. Edwards, J.C.W. (2020). In: National Institute for Health and Care Excellence. (2020). Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. Draft guidance consultation. Supporting documentation.

https://www.nice.org.uk/guidance/gid-ng10091/documents/supporting-documentation-3

4. Geraghty, K.J. (2017) PACE-Gate: When clinical trial evidence meets open data access. J Health Psychol. 22(9):1106-1112.
 
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That's a good letter, as always. I would like if something about the historical context was added. Something about CBT and GET and the standards of evidence being a paradigm that failed, and how this has probably contributed to there being a lack of progress in ME/CFS. Without a way to discard ineffective approaches, science becomes stuck.
 
Barry said:
Note she says "many patients do recover from chronic fatigue symptoms", not syndrome.
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Yep. I agree. I also suffered chronic fatigue due to a poorly managed thyroid and untreated anaemia. Without ME and with correct treatment both of these would be effectively managed so that a person could live a normal life, even if they can't be cured or might recur. Exercise would have zero positive effect on either and would make a person feel immediately worse without triggering PEM.

However, many people with chronic fatigue symptoms will get better on their own in a year or so without any medical intervention at all. So her claims of recovery on that score are possibly equivalent to someone saying they ate a banana once a week and they recovered ergo eat more bananas.

No matter what she's talking about be it chronic fatigue or chronic fatigue syndrome she needs to spell out what she means by recovery - what measures does she use?

Patients returned to full time work in their old job or career?
Part time return to old job?
Full time to less demanding job?
Not able to return to work but able to.pursue hobbies?
Off benefits?

What long term follow up measures are recorded & at what intervals.

The sweeping statement about recovery no longer washes. If this lady is publishing pieces and citing recovery then I want to know precisely what she means.
 
Invisible Woman said:
Looks good.

End of second paragraph -


I'm not sure if the number 2 is to indicate a footnote? If so I think this maybe should be footnote 1 as it's the first and there are 2 instances of the number 2 appearing.
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Thanks, there is a 1 earlier and the 2s both refer to the NICE draft.

I am actively editing the letter on thread so that people can see.
I have removed direct reference to specific trials.
 
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Jonathan Edwards said:
What is particularly important now is that muddled thinking is not used to justify ‘rehabilitation’ of people with Long Covid. We have no reason to think that post-viral illness would benefit from anything other than time and not trying to do too much.
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Great letter – thank you.

I wonder if a small clarification is in order with these last two sentences, as it appears that some people described as having Long Covid may have organ damage in addition to (or rather than) post-viral symptoms? Something like:

What is particularly important now is that muddled thinking is not used to justify ‘rehabilitation’ of people with post-viral symptoms after Covid. We have no reason to think that they would benefit from anything other than time and not trying to do too much.
 
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