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

John Mac

John Mac

Senior Member (Voting Rights)
Split from:
NICE ME/CFS guideline - draft published for consultation - 10th November 2020


Updated NICE guidance on chronic fatigue syndrome

Why standard approaches to evidence evaluation must change

An update of the National Institute for Health and Care Excellence (NICE) guidelines for diagnosis and management of chronic fatigue syndrome (also known as myalgic encephalomyelitis (CFS/ME)) is open for consultation, closing on 22 December.1 In contrast to the 2007 guidelines,2 which recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate CFS/ME, 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

Instead, the new draft emphasises the potential harms of exercise, based on qualitative evidence provided by a small number of service users, and the balance has shifted towards helping patients to adjust to the long term debilitating effects of CFS/ME. It also shortens the timescale for diagnosis of CFS/ME, to include patients with symptoms persisting for just 12 weeks, even though the criteria developers recommend six months.6 This change in attitude away from rehabilitative interventions is worrying, as many patients do recover from chronic fatigue symptoms. Importantly, as the covid-19 pandemic shows, although fatigue, post-exertional malaise, and other symptoms may persist for weeks or months after viral illness, symptoms can improve over time with appropriate support and rehabilitation. The proposed update has therefore provoked a highly polarised response.
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https://www.bmj.com/content/371/bmj.m4774.full
 
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John Mac said:
Updated NICE guidance on chronic fatigue syndrome

Why standard approaches to evidence evaluation must change
https://www.bmj.com/content/371/bmj.m4774.full
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It's the BMJ editorial by Lynne Turner-Stokes & Derick T Wade.

This change in attitude away from rehabilitative interventions is worrying, as many patients do recover from chronic fatigue symptoms. Importantly, as the covid-19 pandemic shows, although fatigue, post-exertional malaise, and other symptoms may persist for weeks or months after viral illness, symptoms can improve over time with appropriate support and rehabilitation. The proposed update has therefore provoked a highly polarised response.
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One fundamental problem is the NICE approach to evaluating evidence. NICE uses the GRADE system, which sets out a series of isolated questions using the PICO (patient, intervention, comparison, and outcome) framework …
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I have been expecting that some people will try to do a detailed critique of the evaluation applied by NICE and am curious to know what their arguments are.

Unfortunately, it's paywalled and the preview just ends there.

Also I think it would be interesting to know whether / how the evaluation methods differed this time compared to the previous assessment. Or were the methods just applied more thoroughly?
 
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Lynne Turner Stokes has revealed her inability to grasp the issue of evidence quality. She once had good critical skills but critical skills tend to suffer when the topic is close to home. There is no evidence that NICE downgraded evidence because of the very obvious shortcomings of GRADE. More likely it found the evidence to be inadequate in rigorous terms. Nothing to do with a 'small number of service users'.

The arguments Lynne provides for being more lenient in chronic conditions are transparently invalid - as I pointed out in my expert witness testimony. She says:

Above all, it is time to recognise that person centred rehabilitation, delivered over an appropriate period, is much more likely to provide tangible benefits than the piecemeal, disjointed efforts that continue to be fostered by the current NICE guideline methods.

But where is there a scrap of evidence for this? Randomised trials show that the effect is close to zero, especially when the y axis is displayed properly.
 
John Mac said:
Updated NICE guidance on chronic fatigue syndrome



https://www.bmj.com/content/371/bmj.m4774.full
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What an impertinent, insulting thing to publish by BMJ. By someone who is not even party to any of this, with a ridiculous conflict of interest being a rehabilitation specialist whining that an invalid rehabilitation paradigm has been discredited.

More than anything this editorial is a whiny rant about the fact that their work cannot meet the standards of science and that this is unfair. It isn't. You are required to prove your claims in science. You cannot and never did. End of story. Being able to push it into practice without evidence means nothing. With time, reality always asserts itself and it finally did.

Everything is about them, their little person, how it affects them. They cannot possibly think of the larger consequences of their navel-gazing. They take no consideration for the enormous harm they leave behind.

Ignorant, impertinent and insulting. All normal things to publish in a medical journal. All very normal things by professionals.
 
Editorials
Updated NICE guidance on chronic fatigue syndrome
BMJ 2020; 371
https://www.bmj.com/content/371/bmj.m4774

References for the "overall positive results of randomised evidence published since 2007". [3, 4, 5]

[3] = Cochrane review

[4] = A systematic review from 2015 I havn't heard of before, published by Clinical Psychology Review

[5] = PACE trial

References
  1. ↵
    National Institute for Health and Care Excellence. 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
  2. ↵
    National Institute for Health and Care Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. 2007. https://www.nice.org.uk/guidance/cg53
  3. ↵
    1. Larun L,
    2. Brurberg KG,
    3. Odgaard-Jensen J,
    4. Price JR
    . Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev2019;10:CD003200.pmid:31577366
    CrossRefPubMedGoogle Scholar
  4. ↵
    1. Marques MM,
    2. De Gucht V,
    3. Gouveia MJ,
    4. Leal I,
    5. Maes S
    . Differential effects of behavioral interventions with a graded physical activity component in patients suffering from chronic fatigue (syndrome): an updated systematic review and meta-analysis. Clin Psychol Rev2015;40:123-37. doi:10.1016/j.cpr.2015.05.009 pmid:26112761
    CrossRefPubMedGoogle Scholar
  5. ↵
    1. White PD,
    2. Goldsmith KA,
    3. Johnson AL,
    4. et al.,
    5. PACE trial management group
    . Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet2011;377:823-36. doi:10.1016/S0140-6736(11)60096-2 pmid:21334061
    CrossRefPubMedWeb of ScienceGoogle Scholar
  6. ↵
    1. Rowe PC,
    2. Underhill RA,
    3. Friedman KJ,
    4. et al
    . Myalgic encephalomyelitis/chronic fatigue syndrome diagnosis and management in young people: a primer. Front Pediatr2017;5:121. doi:10.3389/fped.2017.00121 pmid:28674681
    CrossRefPubMedGoogle Scholar
  7. ↵
    1. Collin SM,
    2. Nikolaus S,
    3. Heron J,
    4. Knoop H,
    5. White PD,
    6. Crawley E
    . Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands. J Psychosom Res2016;81:14-23. doi:10.1016/j.jpsychores.2015.12.006 pmid:26800634
    CrossRefPubMedGoogle Scholar
  8. ↵
    1. Wade DT
    . Goal setting in rehabilitation: an overview of what, why and how. Clin Rehabil2009;23:291-5. doi:10.1177/0269215509103551 pmid:19293289
    CrossRefPubMedWeb of ScienceGoogle Scholar
  9. ↵
    1. Turner-Stokes L,
    2. Pick A,
    3. Nair A,
    4. Disler PB,
    5. 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
    CrossRefPubMedGoogle Scholar
  10. ↵
    1. Turner-Stokes L,
    2. Williams H,
    3. Bill A,
    4. Bassett P,
    5. 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
    Abstract/FREE Full TextGoogle Scholar
  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
  13. ↵
    1. Turner-Stokes L,
    2. Harding R,
    3. Sergeant J,
    4. Lupton C,
    5. McPherson K
    . Generating the evidence base for the National Service Framework for Long Term Conditions: a new research typology. Clin Med (Lond)2006;6:91-7. doi:10.7861/clinmedicine.6-1-91 pmid:16521364
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(Strange -- when I browsed the BMJ website for the complete issue, I somehow managed to see the editorial's full text, but when I now copy the corresponding link, it takes me to the paywalled version: https://www.bmj.com/content/371/bmj.m4774 )

Edited for clarity.
 
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Tom Kindlon said:
Lynne Turner Stokes previously produced this slide:
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I'd like to see any evidence supporting these claims, and obviously there can't be any, this is laughable and insulting, as it directly questions patients' integrity.
This only prooves that she is a person with a deep contempt for patients and an absolute lack of understnading of what science and evidence are.
 
Tom Kindlon said:
Lynne Turner Stokes previously produced this slide:
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There are always outliers that frauds and quacks use to try and prove a general case. Which itself shows how little they comprehend.

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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Jonathan Edwards said:
I think @dave30th ought to have something to say about this. It looks like serious political interference with the work of NICE by a 'small number of service providers' with vested interests!
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Yes, service providers who services are relatively cheap, and thereby politically favoured, pushing clinical effectiveness much further down the priority list.
 
An interesting thing about Turner Stokes's piece is that it contradicts itself.

Firstly it says that there is evidence for the value of rehabilitative treatments.

Then it points out that the methods used- randomised controlled trials - are not much use for conditions like ME/CFS.

So there isn't any good evidence.

Since NICE is supposed to recommend on the basis of good evidence it must have got things right.
 
What I took away from that article:
Jonathan Edwards said:
Importantly, as the covid-19 pandemic shows, although fatigue, post-exertional malaise, and other symptoms may persist for weeks or months after viral illness, symptoms can improve over time with appropriate support and rehabilitation.
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We will have to keep banging on about the natural course of post-viral fatigue syndrome/ME/CFS - most people recover in the first two years regardless of whether they receive treatment or not. Any statements about the impact of a treatment has to take this trend of natural recovery into account.

Jonathan Edwards said:
Patients with CFS/ME are not a homogeneous group.7 As is the case with other complex conditions, each person’s experience is unique, and the intervention(s) needed will depend on their particular symptoms, circumstances, and preferences.
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We are right to push back against wording that tries to suggest that each person's illness is unique and therefore there needs to be experts with 'special indefinable knowledge' working out individual programmes that can never be measured in scientific trials. We are right to push back about the word 'complex'. At one level, every person with any kind of illness is unique, but that does not mean that there cannot be good, well-defined guidance on treatment.

Jonathan Edwards said:
By failing to understand the fundamental principles of good medical practice in these complex, multifactorial conditions, NICE methods continue to foster a fragmented approach in which some patients are effectively provided with trousers only, and others with just the jacket—typically on a short term (“hire”) basis. Small wonder that the trials have overall success rates of under 50%, although an important minority of patients do improve.
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Jonathan Edwards said:
This can only be achieved through systematic collection and longitudinal analysis of real life clinical data on a large scale.
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We need to keep highlighting the fact that the performance of clinics has been abysmal. Many patients drop out after a single session. Objective outcome measures don't improve. The reputation of these clinics in the patient community is abysmal. And this is in the context of an illness (or collection of illnesses) where there is a high rate of natural improvement in the early years - it should be easy to point to good outcomes. Yes, there should be better collection of data from clinics and followup.

We need to think about this idea that it is just that the clinics haven't been funded well enough or resourced enough, that they haven't been able to work out, with patients of course, exactly what the patient needs and then deliver exactly the right mix of GET and CBT and whatever. It is difficult to counter the idea that 'we've never been resourced to deliver the ideal service (and the service only works when exactly the right mix of therapies is delivered to an individual), so give us your trust and a lot more funding, and we will be able to deliver some great results.' How to counter that?
 
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Jonathan Edwards said:
Existing evidence shows that some patients with CFS/ME do benefit from various components of rehabilitation, and our first priorities should be to identify who is likely to respond to which intervention(s), and to ensure that each patient’s needs are met.
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Oh, and this one. We can expect lots more tortured data analysis trying to suggest that subsets of patients (the ones who are too perfectionist, or too lazy or too fearful or has a mother who is too perfectionist etc) actually have done well with particular flavours of therapy.
 
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