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

Andy said:
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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Thanks Andy. I've changed it to:

Turner-Stokes and Wade also write that “many patients do recover from chronic fatigue symptoms”. If this statement refers to ME/CFS, the subject of the draft guideline, then it is at odds with a systematic review on the prognosis of ME/CFS which indicates low recovery rates with a median of only 5 percent. [7]​

jonathan_h said:
Great response :thumbup:. Just a small typo I noticed—“returned” here should be “return”.
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Thanks!
 
Thanks @Jonathan Edwards and @Michiel Tack for your very helpful and succinct responses. (Or shouln't I say thanks because that could give you a COI --- all the appreciation from marginalised, severely ill people.....?)

Michiel Tack said:
n such instances, however, quality criteria usually recommend using objective outcomes as these are less prone to various biases. [4] Randomized trials on rehabilitative interventions for ME/CFS have included several objective outcomes such as work resumption, healthcare utilization, actigraphy, and various fitness tests. The results of these objective outcomes were summarized in a review by Vink & Vink-Niese. [5] Overall these showed no clinically significant improvements which was likely one of the reasons for the NICE guideline committee to downgrade the evidence for rehabilitative interventions to low or very low quality. If large effects were seen on objective outcomes including ME/CFS patients returning to work, increasing their fitness level, or requiring less healthcare, the committee would likely not have downgraded the results of these trials.
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Very good and important paragraph.

Just one thought: Given that even @Hilda Bastian (if I remember correctly) once misunderstood arguments that trials should include objective outcomes as primary endpoints in a way as if we meant subject ive outcomes are of no value at all, perhaps add a sentence to prevent such a misunderstanding?
 
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MSEsperanza said:
Just one thought: Given that even @Hilda Bastian (if I remember correctly) once misunderstood arguments that trials should include objective outcomes as primary endpoints in a way as if we meant subject ive outcomes are of no value at all, perhaps add a sentence to prevent such a misunderstanding?
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Thanks Perhaps I could simply add:

... however, quality criteria usually recommend using objective outcomes (in addition to subjective ones) as these are less prone to various biases.​
 
Somewhat weirdly, the BMJ have felt the need to promote their editorial again on Twitter.
"Patients with CFS/ME are not a homogeneous group. By failing to understand the fundamental principles of good medical practice in these complex, multifactorial conditions, NICE methods continue to foster a fragmented approach," says this #BMJEditorial ow.ly/qtXd50CN63T
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At least for me, the link that they provide for the editorial allows me to see the whole thing.
 
"Patients with CFS/ME are not a homogeneous group. By failing to understand the fundamental principles of good medical practice in these complex, multifactorials condition, NICE methods continue to foster a fragmented approach" (The BMJ Tweet)

chrisb said:
If the group is not homogeneous why would it be wrong to pursue a fragmented approach?
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Seems they mix up heterogenity of a patient group and multifactorial etiology of an illness, and 'many symptoms' with 'many factors'?

So they are focussing on that "complex, multifactorials condition" argument now.

What do they know about the 'factors' of ME? What could medical care do for the one well-established 'factor' that is associated with ME -- that it often sets in after viral illness?
 
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Read somewhere that Stokes is on the committee for the Covid 19 guideline - is that correct? If so then she would be heavily involved in rapid development of post-viral fatigue guideline that would share a strong overlap with the ME/CFS guideline - making public assertions about either would have potential implications re the other. In which case would that not constitute a non-financial COI when publishing such an article in the BMJ?
 
Barry said:
Read somewhere that Stokes is on the committee for the Covid 19 guideline - is that correct? If so then she would be heavily involved in rapid development of post-viral fatigue guideline that would share a strong overlap with the ME/CFS guideline - making public assertions about either would have potential implications re the other. In which case would that not constitute a non-financial COI when publishing such an article in the BMJ?
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I don't know about conflict of interest but my understanding is that everyone involved in NICE guideline production has to sign a stringent set of rules aimed at not trying to influence the outcome. Strangely I never signed anything, but then I was just an outside witness.
 
Andy said:
Have seen the Long COVID guideline? Apparently there is no overlap, at least as far as the guideline is concerned.
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Interestingly, although I appreciate this is not the Covid 19 guideline itself, this document, "Management of the long-term effects of COVID-19, Targeted peer consultation on draft scope" has 27 references to "CFS" in it, and 21 to "ME/CFS".

https://www.nice.org.uk/guidance/ng188/documents/consultation-comments-and-responses

Not trawled them all but I think well worthwhile looking at in the context of our own ME/CFS work. Here is just one example at comment 54:
Chronic Long Covid Support Group said:
‘Associated psychological impacts’. It is critical here to note the difference between mental health impacts brought about by the failure of the NHS to support patients. GPs have been dismissive, tests refused, antibody tests were promised and removed, families ignorant and so there may have been some impacts on people’s mental health which will require intervention. However, CBT and GET which have been recognised in the medical community by more than 100 academics, MPs and experts on global public health as being based on failed research and called for to be removed has persisted with reference to ME/CFS patients. WE have already seen heart attacks in patients prescribed this therapy. You will find that there is already much resistance to GET/CBT in the post covid syndrome community.

Many of us are also showing ME/CFS effects and we think you need to be clear about what sort of psychological intervention is being proposed. We do not support this dangerous therapy and NICE stated in July that this would not be pursued but we see a heavy reference to ‘psychological’ support in this document later on. Perhaps we will get somewhere if we recognise that patients are urgently needing scans to determine if they have myocarditis etc since it is dangerous to be left untreated, there doesn’t seem to be much reference to a treatment plan included?
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