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

Perhaps Professor (9-5) of data science should be more transparent about who they are and why they should raise such an emotional response from such an ill-informed, confused and unhelpful position.

The irony.

 

Perhaps he needs to work longer hours.

 

I think that may be an error or misinterpretation. The NICE draft guidelines may cast doubt on the sort of treatments that L T-S champions and uses. Maybe she has been involved in systematic reviews that were cited?

 

A quick PubMed search suggests that Turner-Stokes has herself done one controlled trial- of Botox for spasticity. But she has done about twenty Cochrane systematic reviews of rehabilitative treatments, including exercise.

 

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]​

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.....?)

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?

 

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.

https://twitter.com/user/status/1339827940343820288


At least for me, the link that they provide for the editorial allows me to see the whole thing.

 

If the group is not homogeneous why would it be wrong to pursue a fragmented approach?

 

"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)

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?

 

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?

 

Very good.

 

Have seen the Long COVID guideline? Apparently there is no overlap, at least as far as the guideline is concerned.

 

It's a complete smØrgastrone.
Mind you NICE methods do seem be fostering a fragmented approach- by hiring people to do Long Covid who know nothing about ME.

 

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.

 

Can't see a list of guideline Committee, but the register of interests is available:
https://www.nice.org.uk/guidance/ng188/documents/register-of-interests
Includes Trudie Chalder and other familiar names.

 

https://twitter.com/user/status/1339915002392801282

 

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:

 

25 years? More like 50.https://www.bmj.com/content/bmj/1/5687/1.1.full.pdf

 

Now published, https://www.bmj.com/content/371/bmj.m4774/rr-5