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

[Shinygleamy]

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.

I would suspect professor (9-5) is one of the bps lot

 

[Jonathan Edwards]

I would suspect professor (9-5) is one of the bps lot

I think we can probably exclude that. P9-5 sounds like some sort of statistician or number cruncher who for some reason has a vested interest in healthcare finance. Maybe in a rather drudge job relieved by the excitement buying stocks in spare time. Possibly just bananas though.

 

[Kalliope]

 

[Kalliope]

 

[Sly Saint]

I think we can probably exclude that. P9-5 sounds like some sort of statistician or number cruncher who for some reason has a vested interest in healthcare finance. Maybe in a rather drudge job relieved by the excitement buying stocks in spare time. Possibly just bananas though.

my guess is P9-5 is related to Derick Wade.

Of course Derick Wade is also a consultant at Oxford University hospitals, as is Michael Sharpe.
https://www.ouh.nhs.uk/services/consultants/

He did a webinar on Rehab and covid-19

couple of slides:





https://player.rcplondon.ac.uk/video/1_gkfag0cf

 

[Sly Saint]

 

[Simon M]

Merged thread

Re: Updated NICE guidance on chronic fatigue syndrome (Hughes, Tuller, Racaniello)

Apologies if this brillaint rapid response to the BMJ editorial by Profs Wade and Turner-Stokes has been posted already:
https://www.bmj.com/content/371/bmj.m4774/rr-4

Rapid response:
Re: Updated NICE guidance on chronic fatigue syndrome

Dear Editor

The recent editorial from Professors Turner-Stokes and Wade about the new draft of clinical guidelines for ME/CFS from the National Institute for Health and Care Excellence (NICE) is problematic on multiple fronts. [1]

...
The PACE investigators referred to their trial as the “definitive” test of their preferred approach to therapeutic intervention for this disabling illness. Lancet editor Richard Horton hailed the research that appeared in his journal as “remarkable” and “utterly impartial”. [3] No less an eminence than Professor Sir Simon Wessely, who was involved with PACE but was not a co-author, proclaimed it “a thing of beauty”. [4]

Professor Wade himself declared the following about PACE in a statement released on his behalf by the Science Media Centre, a communications agency with close ties to the trial investigators: “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.” [5]
...

The editorial’s main argument is that non-pharmacological treatments with multiple elements cannot be appropriately evaluated using the standard GRADE system. Trials of these therapies, the authors declare, are inevitably hampered by built-in limitations, such as the difficulty of blinding interventions and the need to use subjective outcomes in the absence of physiological measures. Whether or not GRADE is adequate for these kinds of non-pharmacological interventions, challenging the process and the rules after-the-fact raises questions about whether such protests are primarily principled or self-interested.

....

 

[Simon M]

Other gems:

Second, just because you believe that you cannot meet a high theoretical standard does not entitle you to demand that you be judged against a lower one. The fact that your research falls short does not make the theoretical standard less important. Nor does it magically infuse your efforts with robustness or diminish the need for reliable data in order to assess performance.

...

By stating that the “rigid structure” of RCTs is inappropriate for testing the effectiveness of rehabilitative strategies involving CBT and GET, Professors Turner-Stokes and Wade are throwing the once-vaunted PACE trial and all related research under the bus. They are also demanding that the rest of us change our own positions about the importance of maintaining research standards. While stating that some people with the illness get better, they provide no reliable or valid evidence that their individualised rehabilitative approach has improved patients’ health more than, say, the passage of time on its own.

 

[Tom Kindlon]

 

[Tom Kindlon]

View attachment 12903

Good find. I've highlighted it on Twitter:

 

[Barry]

Professor Wade himself declared the following about PACE in a statement released on his behalf by the Science Media Centre, a communications agency with close ties to the trial investigators: “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.” [5]

Interesting, then, that the 2011 PACE paper only claimed "(PACE): a randomised trial", and not a controlled trial, having backed off from their original protocol claim. So Wade was saying that PACE did not cut it as being "reliable evidence on safety and effectiveness" - he was right.

 

[Jonathan Edwards]

There is no reason it is impossible to have an RCT where individual therapists personalise what they offer. And if different therapists take part in the one trial, one can look for "therapist effects" to see whether there was much variation in the outcomes between therapists. (From Tom K)

This is a very important point. And very valid. It is perfectly possible to do trials in which every patient is treated on an individualised basis. I could even quote
A double blind controlled trial of methylprednisolone infusions in systemiclupus erythematosus using individualised outcome assessment.
Edwards JC, Snaith ML. Ann Rheum Dis. 1987 Oct;46(10):773-6

where we did just that.

Turner-Stokes was in our department at the time this was published!

 

[Graham]

It frustrates me when such people expect us to accept small improvements in answers to questionnaires on health as evidence of efficacy, yet deny the accounts of large numbers of patients who insist that GET has harmed them.

 

[Peter T]

It frustrates me when such people expect us to accept small improvements in answers to questionnaires on health as evidence of efficacy, yet deny the accounts of large numbers of patients who insist that GET has harmed them.

Especially when they reject this evidence of harm because such qualitative evidence is not acceptable, and then a paragraph later say that this type qualitative of evidence is exactly what we should accept if it supports their preferred intervention.

 

[rvallee]

There is no reason it is impossible to have an RCT where individual therapists personalise what they offer. And if different therapists take part in the one trial, one can look for "therapist effects" to see whether there was much variation in the outcomes between therapists. (From Tom K)

This is a very important point. And very valid. It is perfectly possible to do trials in which every patient is treated on an individualised basis. I could even quote
A double blind controlled trial of methylprednisolone infusions in systemiclupus erythematosus using individualised outcome assessment.
Edwards JC, Snaith ML. Ann Rheum Dis. 1987 Oct;46(10):773-6

where we did just that.

Turner-Stokes was in our department at the time this was published!

Interesting point. Especially considering the underlying idea, the genesis of all this, the vainglorious biopsychosocial approach that promises up to 50% in savings when applying this formula to a large population, what became operationalized as IAPT. 50% of what? Nobody knows but it sounds impressive. Especially when exaggerating the costs of "MUS" by mixing up working age population with the entire population.

Basically promoting two mutually exclusive benefits: it is tailored to the person but also applying it factory-style to a large population will yield significant savings. Of course none of this is "tailored" to anyone so the first point is more of a BS sales argument everyone knows is bunk. A point easily made by their own research showing an app version, as sausage-factory as it gets, is just as "good" as an expertly (more like expensively) trained therapist in that it delivers nothing better than a thorough (or not) reading of The Secret will yield. Or placing it under one's pillow, for all that it matters.

In reality there is only the large numbers thing, where the sum of the small benefits to a large population is what makes it all cost-effective. Except it's in direct contradiction with the arguments made here, of a bespoke version to each individual, making it too hard to study (nevermind it doesn't), but also because the same recipe is applied to a large population on average it comes out on top with those much-vaunted enormous costs MUS represent.

It's certainly hard to keep track of lies, especially when they are so casually thrown around. Here they clearly forgot the whole thing was sold to bigwigs based on the savings-with-large-numbers alone, not anything having to do with an individualized program that somehow makes it impossible to prove efficacy. Or more like they don't care much about contradicting themselves, it's not as if it ever got them in trouble.

 

[Sly Saint]

another rapid response

from Peter F Kemp

Professors Turner-Stokes and Wade claim that the PACE Trial[1] produced ‘overall positive results’ for cognitive behavioural therapy (CBT) and graded exercise therapy (GET) for patients with chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (M.E.).[2]

The phrase, ‘overall positive results’ is uninformative but the implication is that CBT and GET in the PACE Trial (Turner-Stokes and Wade, reference #5) were effective for treating patients with M.E. and CFS. I disagree.

Firstly, the PACE Trial did not study the conditions that Turner-Stokes and Wade mention. It studied an heterogeneous cohort of patients with fatigue as their, “main symptom, accompanied by significant disability, in the absence of an exclusionary medical or psychiatric diagnosis”.[1]

Secondly, the results did not provide evidence of efficacy with either CBT or GET. On the contrary – the randomised, controlled clinical trial provided compelling evidence that CBT and GET do not treat M.E., CFS or even chronic fatigue.

https://www.bmj.com/rapid-responses...te_value_1&sort_order=DESC&items_per_page=200

 

[Trish]

Some posts have been moved to a new thread, merging with a discussion of the same article that were on another thread.
BMJ: Rapid response to 'Updated NICE guidance on CFS', 2021, Jason Busse et al, Co-chair and members of the GRADE working group

 

[Jonathan Edwards]

Some posts have been moved to a new thread, merging with a discussion of the same article that were on another thread.

Reminds me of:

Chico: “Naw. I dunna like it"

Groucho:The first part of the party of the first part shall be known in this contract as the first part of the party of the first part shall be known in this contract-- Look, why should we quarrel about a thing like this? We'll take it right out, eh?”

 

[MSEsperanza]

Nut sure whether relevant, but I thought it's interesting that until the year 2015, both Lynne Turner-Stoke and Dereck T Wade were also Cochrane authors.[*]

And there are these papers co-authored by Dereck T Wade and/or Lynne Turner-Stoke:

Wade DT, Halligan PW. The biopsychosocial model of illness: a model whose time has come. Clin Rehabil. 2017 Aug;31(8):995-1004. doi: 10.1177/0269215517709890. PMID: 28730890.

Thread here.

Phillips M, Turner-Stokes L, Wade D, et al. Rehabilitation in the wake of COVID-19-A phoenix from the ashes. Br Soc Rehabil Med [Updated 2020 Apr 27; cited 2020 Dec 27].

Thread here.


[*] Cochrane reviews co-authored by Lynne Turner‐Stokes and/or Derick T Wade:

Effectiveness of vocational rehabilitation intervention on the return to work and employment of persons with multiple sclerosis
Fary Khan, Louisa Ng, Lynne Turner‐Stokes
Intervention
Review
21 January 2009

Exercise for people with peripheral neuropathy
Claire Margaret White, Jane Pritchard, Lynne Turner‐Stokes
Intervention
Review
18 October 2004


Multidisciplinary care for Guillain‐Barré syndrome
Fary Khan, Louisa Ng, Bhasker Amatya, Caroline Brand, Lynne Turner‐Stokes
Intervention
Review
6 October 2010


Multidisciplinary rehabilitation for adults with multiple sclerosis
Fary Khan, Lynne Turner‐Stokes, Louisa Ng, Trevor Kilpatrick, Bhasker Amatya
Intervention
Review
18 April 2007


Multidisciplinary rehabilitation programmes following joint replacement at the hip and knee in chronic arthropathy
Fary Khan, Louisa Ng, Senen Gonzalez, Tom Hale, Lynne Turner‐Stokes
Intervention
Review
23 April 2008


Multidisciplinary rehabilitation for follow‐up of women treated for breast cancer
Fary Khan, Bhasker Amatya, Louisa Ng, Marina Demetrios, Nina Y Zhang, Lynne Turner-Stokes
Intervention
Review
12 December 2012


Multi‐disciplinary rehabilitation for acquired brain injury in adults of working age
Lynne Turner‐Stokes, Anton Pick, Ajoy Nair, Peter B Disler, Derick T Wade
Intervention
Review
22 December 2015

• New search
• Conclusions changed

Multidisciplinary rehabilitation following botulinum toxin and other focal intramuscular treatment for post‐stroke spasticity
Marina Demetrios, Fary Khan, Lynne Turner‐Stokes, Caroline Brand, Shane McSweeney
Intervention
Review
5 June 2013


Rehabilitation interventions for foot drop in neuromuscular disease
Catherine M Sackley, Peter B Disler, Lynne Turner‐Stokes, Derick T Wade, Nicola Brittle, Thomas Hoppitt
Intervention
Review
17 February 2015

• Withdrawn

Non pharmacological interventions for spasticity in multiple sclerosis
Bhasker Amatya, Fary Khan, Loredana La Mantia, Marina Demetrios, Derick T Wade
Intervention
Review
28 February 2013


Services for helping acute stroke patients avoid hospital admission
Peter Langhorne, Martin Dennis, Lalit Kalra, Sasha Shepperd, Derick T Wade, Charles DA Wolfe
Intervention
Review
18 January 2012

• Withdrawn

 

[adambeyoncelowe]

Nut sure whether relevant, but I thought it's interesting that until the year 2015, both Lynne Turner-Stoke and Dereck T Wade were also Cochrane authors.[*]

And there are these papers co-authored by Dereck T Wade and/or Lynne Turner-Stoke:

Wade DT, Halligan PW. The biopsychosocial model of illness: a model whose time has come. Clin Rehabil. 2017 Aug;31(8):995-1004. doi: 10.1177/0269215517709890. PMID: 28730890.

Thread here.

Phillips M, Turner-Stokes L, Wade D, et al. Rehabilitation in the wake of COVID-19-A phoenix from the ashes. Br Soc Rehabil Med [Updated 2020 Apr 27; cited 2020 Dec 27].

Thread here.


[*] Cochrane reviews co-authored by Lynne Turner‐Stokes and/or Derick T Wade:

Effectiveness of vocational rehabilitation intervention on the return to work and employment of persons with multiple sclerosis
Fary Khan, Louisa Ng, Lynne Turner‐Stokes
Intervention
Review
21 January 2009

Exercise for people with peripheral neuropathy
Claire Margaret White, Jane Pritchard, Lynne Turner‐Stokes
Intervention
Review
18 October 2004


Multidisciplinary care for Guillain‐Barré syndrome
Fary Khan, Louisa Ng, Bhasker Amatya, Caroline Brand, Lynne Turner‐Stokes
Intervention
Review
6 October 2010


Multidisciplinary rehabilitation for adults with multiple sclerosis
Fary Khan, Lynne Turner‐Stokes, Louisa Ng, Trevor Kilpatrick, Bhasker Amatya
Intervention
Review
18 April 2007


Multidisciplinary rehabilitation programmes following joint replacement at the hip and knee in chronic arthropathy
Fary Khan, Louisa Ng, Senen Gonzalez, Tom Hale, Lynne Turner‐Stokes
Intervention
Review
23 April 2008


Multidisciplinary rehabilitation for follow‐up of women treated for breast cancer
Fary Khan, Bhasker Amatya, Louisa Ng, Marina Demetrios, Nina Y Zhang, Lynne Turner-Stokes
Intervention
Review
12 December 2012


Multi‐disciplinary rehabilitation for acquired brain injury in adults of working age
Lynne Turner‐Stokes, Anton Pick, Ajoy Nair, Peter B Disler, Derick T Wade
Intervention
Review
22 December 2015

• New search
• Conclusions changed

Multidisciplinary rehabilitation following botulinum toxin and other focal intramuscular treatment for post‐stroke spasticity
Marina Demetrios, Fary Khan, Lynne Turner‐Stokes, Caroline Brand, Shane McSweeney
Intervention
Review
5 June 2013


Rehabilitation interventions for foot drop in neuromuscular disease
Catherine M Sackley, Peter B Disler, Lynne Turner‐Stokes, Derick T Wade, Nicola Brittle, Thomas Hoppitt
Intervention
Review
17 February 2015

• Withdrawn

Non pharmacological interventions for spasticity in multiple sclerosis
Bhasker Amatya, Fary Khan, Loredana La Mantia, Marina Demetrios, Derick T Wade
Intervention
Review
28 February 2013


Services for helping acute stroke patients avoid hospital admission
Peter Langhorne, Martin Dennis, Lalit Kalra, Sasha Shepperd, Derick T Wade, Charles DA Wolfe
Intervention
Review
18 January 2012

• Withdrawn

Oh yes, they're definitely empire builders.