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

What a piece of nonsense. for years they have pushed everyone with "CFS" into one of two pathways, based on RCTs that they claimed proved their case. Now that evidence is no good. And it is really shocking that she is claiming long-Covid proves people get better with rehab support. When did long-Covid end? What rehab support is she talking about? She is claiming an indivualized approach is he way to go when they have argued the opposite for three decades. Not much variety in their CBT/GET template. These people really seem desperate.

 

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.

 

It appears that most people will get better regardless of what they do or don't do. A controlled study is needed to distinguish the effect of treatment from the effect of time passing.

 

most will likely get better over time, if past experience can be trusted. presumably some will have long-term complications that do not seem to resolve for years. how she thinks this "proves" anything is bizarre

 

https://twitter.com/user/status/1339306954812899328

 

https://twitter.com/user/status/1339308651073445892

https://twitter.com/user/status/1339310948021129217

 

It is bizarre - NICE was misled by qualitative accounts from patients. So what we need is fewer controlled trials and lots more qualitative accounts of patients getting better because you need individualised qualitative accounts for complicated illnesses
(but maybe not by patients).

 

Thanks to Anil sharing a copy, I have been able to read more than the initial part that's visible on the BMJ website.

I couldn't quite muster the energy to write out a detailed critique but will just say: it is nothing more than a protest against the loss of undeserved privilege. She doesn't give any good reasons why clinical trials for therapist delivered treatments should be held to a different standard. All she says is that they can't meet high standards.

(she also talks about how holistic individualized rehab is better in reality than in clinical trials but I wonder how she knows this - presumably she thinks herself free of bias, perfectly objective and more reliable than a clinical trial, which makes me suspicious that these people think of clinical trials as bureaucratic formality, not as method of acquiring knowledge)

 

The BMJ over the years has been quite biased in the papers and editorials it has published.
But it has let through lots and lots of critical e-letters.

They don't need to be tight like letters for publication.

Best to avoid any ad hominems.

Best to include at least one or two references at the end. One obvious one is the piece you are replying to. Even webpages can count as references for this purpose as long as they're put along the bottom.

 

From the BMJ editorial:

References for those "other complex conditions" are:

[9] Turner-Stokes L, Pick A,Nair A, Disler PB, Wade DT, Multi-disciplinary rehabilitation for acquired brain injury in adults of working age. Cochrane Database Syst Rev2015;12:CD004170. doi:10.1002/14651858.CD004170.pub3 pmid:26694853

[10] Turner-Stokes L, Williams H, Bill A, Bassett P, Sephton K., Cost-efficiency of specialist inpatient rehabilitation for working-aged adults with complex neurological disabilities: a multicentre cohort analysis of a national clinical data set. BMJ Open2016;6:e010238. doi:10.1136/bmjopen-2015-010238 pmid:26911586

 

https://twitter.com/user/status/1339336829640855554

 

And check out the second sentence of his statement. He loved RCTs for CFS nine years ago, and we could have confidence in the PACE results. Now that NICE says PACE results are meaningless, it turns out Wade thinks RCTs can't provide good evidence.

“CFS is common, and it is vital to know whether treatments proposed and/or used are safe and are effective. Randomised controlled trials provide the best and only reliable evidence on safety and effectiveness of any intervention in any condition. The trial design in this study was very good, and means that the conclusions drawn can be drawn with confidence."

 

In addition, reference [8] for "integrated rehabilitation takes a holistic approach" is authored by the editorial's co-author Wade and and all of the following references, including the references to rehabilitation after Covid-19, are lead-authored or co-authored by Turner-Stokes and partially by Wade.

[11] British Society of Rehabilitation Medicine. Rehabilitation in the wake of COVID-19: a phoenix from the ashes. 2020. https://www.bsrm.org.uk/downloads/covid-19bsrmissue2-11-5-2020-forweb11-5-20.pdf


[12] National Clinical Audit for Specialist Rehabilitation Following Major Trauma. Final report. Health Quality Improvement Partnership, 2019. https://www.kcl.ac.uk/cicelysaunders/about/rehabilitation/nhs-audit-report-v9-rgb.pdf

 

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.

 

It reminds me very strongly of the dissolution of the slave trade. Those that that tried to stop it being abolished came up with all sorts of ridiculous arguments; black people are not human, etc, (a lot of todays racist beliefs came from that time) And who created these contentions? Slave traders.

 

Always astonishes me that when considering secondary gains for patients, these people don't consider the primary losses.

 

the update cites a “lack of evidence for the effectiveness of these interventions” despite the overall positive results of randomised evidence published since 2007.345

Since when has randomisation of evidence played a part in evaluation in scientific discourse? Perhaps the authors of the updates prefer evidence unrandomised.

This change in attitude away from rehabilitative interventions is worrying, as many patients do recover from chronic fatigue symptoms.

What does recovery from chronic fatigue symptoms have to do with it?

EDIT typo

 

Not sure if anyone has yet pointed out on this thread that Turner Stokes is on the NICE Long Covid committee...

Edit to add evidence:

https://www.s4me.info/threads/longcovid-and-cfs-nice-guidelines.17338/

Guessing Turner-Stokes at least won't want them to be aligned anymore!