Snippets from White P et al. "Eight major errors in the review process and interpretation of the evidence in the NICE guideline [...]" [for ME/CFS]

[Sean]

PEM is an important and common symptom in ME/CFS, but subjectively not specific for ME/CFS.

PEM is the core feature, and it is objectively measurable (2 day test protocol).

That was a product of the therapists wanting to be needed, wanting to be the experts, wanting to write energy management plans for patients, with careful schedules of activity and rest.

Control freaks, inserting themselves into patients' lives for no good reason at all, just trying to hang onto their illegitimate empires and incomes.

It should really have just been something more like 'Advise patients to organise their life so that they can mostly avoid PEM. This may involve cutting back or stopping paid work and education, in which case help the patient to liaise with their employer or school and apply for various assistance. Put patients touch with patient organisations who can offer practical advice and support.' That sort of practical advice doesn't need evidence. 'PEM is awful and debilitating, pushing through PEM doesn't make ME/CFS get better, so avoid PEM'. Not rocket science.

This. Pacing is a management tool, not a therapy. It is used entirely because we don't have any effective therapies. And the one group of people who cannot be blamed for that is patients.

So, it's hardly surprising that the outcomes of the so-called Adaptive Pacing treatment looked a lot like Standard Medical Care.

Indeed.

Furthermore, not only did 'passive' approaches of APT & SMC manage to equal the results for the 'active' approaches of CBT & GET at the 2.5 year long-term follow-up, the slopes of the results at that time point suggest that SMC & APT results will continue improving (albeit modestly), while those for CBT & GET appear to have the form of natural decay curves (regression to the mean) and have flatlined.

- To say that GET is symptom dependent while encouraging the patient to continue exercising even while they are crashing is disingenuous.

You are more polite than I.

The novel interventions for those who don’t respond to GET or CBT will be drivel like ACT.

'These are our therapies. If you don't like them we have others.'

 

[cassava7]

Breakdown of authors by specialty and area of research. Only academic affiliations are given, except for clinicians who do not have one.

11 countries are represented. Below is the tally by country.

1. UK: 28
2. USA: 7
3. AU: 3
4. CA, DE, NL, NO: 2
5. CZ, DK, FR, IT: 1

Psychiatrists & psychologists specializing in psychosomatic medicine and/or MUS

Susan Abbey (University of Toronto, CA)
Daniel J Clauw (University of Michigan, USA)
Anthony David (University College London, UK)
Per Fink (Aarhus University, DK)
Peter Henningsen (Technical University of Munich, DE)
Hans Knoop (University of Amsterdam, NL)
Kurt Kroenke (Indiana University, USA)
Mujtaba Husain (South London and Maudsley NHS Foundation Trust, UK)
James L Levenson (University of Virginia, USA)
Winfried Rief (University of Marburg, DE)
Alastair Santhouse (South London and Maudsley NHS Foundation Trust, UK)
Michael Sharpe (University of Oxford, UK)
Simon Wessely (King’s College London, UK)
Peter White (Queen Mary University of London, UK)
Donna E Stewart (University of Toronto & McGill University, CA)
Vegard Wyller (University of Oslo, NO)

Neurologists / neuropsychiatrists specializing in FND

Harriet A Ball (University of Bristol, UK)
Christine Burness (The Walton Centre NHS Foundation Trust, UK)
Alan Carson (University of Edinburgh, UK)
Jan A Coebergh (St George’s University Hospitals NHS Foundation Trust, UK)
Barbara A Dworetzky (Brigham and Women’s Hospital, USA)
Mark J Edwards (King’s College London, UK)
Alberto J Espay (University of Cincinnati, USA)
Béatrice Garcin (Avicenne AP-HP Hospital, FR)
Ingrid Hoeritzauer (University of Edinburgh, UK)
Anne Catherine ML Huys (formerly University College London, UK; current affiliation unknown)
Alexander Lehn (Brisbane Clinical Neuroscience Centre, AU)
David L Perez (Massachusetts General Hospital, USA)
Wendy Phillips (Cambridge University Hospitals & Princess Alexandra Hospital NHS Foundation Trust, UK)
Markus Reuber (University of Sheffield, UK)
Tereza Serranova (Charles University in Prague, CZ)
Biba Stanton (King’s College Hospital NHS Foundation Trust, UK)
Jon Stone (University of Edinburgh, UK)
Michele Tinazzi (University of Verona, IT)
Adam Zeman (University of Exeter, UK)

Other

Epidemiology & public health

Dedra Buchwald (Washington State University, USA)
Signe Flottorp (Norwegian Institute of Public Health & University of Oslo, NO)
Paul Garner (University of Liverpool, UK)
Paul Glasziou (Bond University, AU)

Infectious diseases

Brian Angus (University of Oxford, UK)
Andrew Lloyd (University of New South Wales, AU)
Alastair Miller (North Cumbria Integrated Care NHS Foundation Trust, UK)
Maurice Murphy (formerly Oxford University Hospitals NHS Foundation Trust; current affiliation unknown)

Internal medicine: Jos WM van der Meer (Radboud University, NL)

Occupational medicine: Ira Madan (King’s College London, UK)

Primary care

William Hamilton (University of Exeter, UK)
Paul Little (University of Southampton, UK)
Irwin Nazareth (University College London, UK)

Rehabilitation medicine

John Etherington (Pure Sports Medicine, UK)
Derick T Wade (Oxford Brookes University, UK)

 

[cassava7]

PACE trial investigators

Brian Angus
Trudie Chalder
Maurice Murphy
Michael Sharpe
Peter White

COFFI committee members

Dedra Buchwald
Trudie Chalder
Daniel J Clauw
Paul Garner
Andrew Lloyd
Jos WM van der Meer
Simon Wessely
Vegard Wyller

 

[Sean]

I guess at least we have all the main psychosomatic players on one self-identified list.

 

[Jonathan Edwards]

I was expecting them to have drawn in people like Guyatt. But it seems likely that there are going to be multiple prongs to this.

If I was Guyatt I think I might have tactically kept a distance having been used as an 'independent opinion' over the exercise review. If Guyatt was on this the whole thing would look even more ridiculous.

I am interested that Wessely is now happy to 'come out' (or reappear) as a co-member of a flat earth society with Henningsen, Wyller, Lightning Flottorp and Garner.

I wonder if the author of that 'there is a way' email is on this list?

 

[cassava7]

If I was Guyatt I think I might have tactically kept a distance having been used as an 'independent opinion' over the exercise review. If Guyatt was on this the whole thing would look even more ridiculous.

I am interested that Wessely is now happy to 'come out' (or reappear) as a co-member of a flat earth society with Henningsen, Wyller, Lightning Flottorp and Garner.

I wonder if the author of that 'there is a way' email is on this list?

The author of the email is said to be Wessely, judging by the typos in his texts that matched those in his tweets.

 

[Andy]

Thanks for that cassava. In my opinion the number of authors from the FND world show clearly that the concern that we have had about FND is more than merited.

 

[Solstice]

I guess at least we have them all the main psychosomatic players on one self-identified list.

I'm "missing" some from the Netherlands, but a lot of them are there yeah.

 

[adambeyoncelowe]

I think we have been through all this stuff many times before.

I don't see Peter Barry (the committee chair) wanted to shift position. He was very confident that the guideline was robust and has no conflict of interest himself. I assume all those complaining do. Ilora Finlay (vice-chair and a political heavyweight) would be extremely resistant to any suggestion of review I think.

NICE is only going to allow a further review if some new person in charge is leant on. That might happen but remember that the 2017 review cost a huge amount of money and it would be difficult to re-do it for less.

@adambeyoncelowe knows all the ins and outs - any thought, Adam?

NICE recently told me that they are incredibly proud of the guideline and think they did it right. They are also working on implementation and raising awareness of the GL, so I can't see them backtracking on it.

All these arguments are recycled ones that we've responded to at length. They never actually engage with rebuttals in good faith, so I think we have to ignore them for now.

E.g., they complain about energy management but equally had unevidenced activity management in CG53.

They complain about a new definition of ME (not true), when CG53 made up its own and said diagnosis should be reconsidered without PEM.

They admit patients should be listened to, but won't even budge on using their preferred terminology at all times (CFS/ME rather than ME/CFS), which seems overtly "ideological" (and frankly, petty) to me.

And their own quotes about GET show that the increments of activity are supposed to be MAINTAINED for a whole week at a time (by which point the harm is done), as a minimum, and that you are then supposed to INCREASE the activity again, not reduce it.

The protocol reveals that "negotiating" activity downward requires permission from a clinician, but the protocol also doesn't accept that worsening is actually harm.

That is not what symptom-contingent means, by any stretch of the imagination!

 

[Charles B.]

Thanks for that cassava. In my opinion the number of authors from the FND world show clearly that the concern that we have had about FND is more than merited.

I hope the Open Medicine Foundation, which has a recognized foothold at Mass General, systematically eviscerates these arguments. It’s an august institution, and it would be shameful if Perez appeared to be the representative voice emanating from there. As I believe I intimated earlier, I don’t know that I’ve ever heard his name mentioned in conjunction with ME. Part of me wants to call his clinic and ask if he would even assume command of my care as I have ME and noticed his interest in the disease.

 

[cassava7]

Thanks for that cassava. In my opinion the number of authors from the FND world show clearly that the concern that we have had about FND is more than merited.

In my view, White reached out to Stone and Carson, both of whom are editors of the JNNP and leaders of the FND movement, so that he could publish his manifesto there, and in turn Stone and Carson reached out to other FND influencers (possibly via a mailing list).

I am not sure that there is excessive cause for concern about the FND movement - more than there would be for MUS - but it does seem like it could become the prevalent interpretation of ME/CFS in neurology.

 

[InitialConditions]

It's now called the World ME Alliance.

There is also the European ME Alliance

There's also the European ME Coalition, who are part of the World ME Alliance. https://europeanmecoalition.com/about/

It's all a bit confusing, isn't it.

But we have to get people together, internationally. Everything is too disjointed.

 

[James]

I'm "missing" some from the Netherlands, but a lot of them are there yeah.

Judith Rosmalen, G Bleijenberg

 

[Dolphin]

There's also the European ME Coalition, who are part of the World ME Alliance. https://europeanmecoalition.com/about/

It's all a bit confusing, isn't it.

But we have to get people together, internationally. Everything is too disjointed.

Up until recently but I’ve heard it may have changed, only one group per country could be a member of the European ME Alliance. So I think that is one reason why a second alliance was set up.

 

[rvallee]

Thanks for that cassava. In my opinion the number of authors from the FND world show clearly that the concern that we have had about FND is more than merited.

I'd put the general issue of EBM and the BPS model as of equal weight, as evidenced by people with little stakes in the matter like Flottorp and Glasziou (and Garner, to a point, I'd say to him this is all about Cochrane). As they say, it strongly overlaps with the chronic pain guidelines, because this is all fully generic, it's not just about us.

This goes to the crisis of replicability, the billions invested in the BPS model and its general uselessness everywhere it's been tried. It's no coincidence that the rise of the BPS model is happening alongside a rapid rise in mental illness, whether actual or, far more likely, BPS-inspired mass misdiagnosis. It's just that for most patients, medicine has something to offer, so this isn't a major threat, it's treated as adjunct instead of central to their treatment.

But the general issue remains the complete failure of the biopsychosocial ideology and how central the evidence-based medicine paradigm has been to producing what is by now very obviously flawed pseudoscience masquerading as legitimate. No system that greenlights nonsense can be treated as credible. No system is perfect, but no functioning system produces nonsense like this, certainly not on a grand scale.

We are the biggest challenge to this paradigm, nothing has been clearly overturned yet. We are the only ones effectively pushing back at this. Not because we are effective at it, because no one else seems open to challenging it head-on. I'd say the main reason for this is that with so few medical professionals backing us who risk reputation suicide for going after the dogma, we can challenge openly without making the few physicians who help us back away, as they already made a choice that made them fringe, if not pariahs. MDs in general are not open to this, so any community where physicians are prominent will back off from this challenge, no matter the threat it represents.

One notable thing, though it won't make any difference, is the long-standing insistence that this is not a medical issue, that it should be treated differently than normal medicine, but the vast majority of the names are MDs, the exceptions are Chalder and the generic EBM folks. Not many psychologists there, those are medical professionals making medical affirmations about medical issues. Can't really insist it's not a medical entity given that. Bah, it's not like anything matters here.

 

[Joan Crawford]

Reading the brilliant comments above - I'm reminded of a crude analogy --- shit or get off the potty---

NICE reconvened to give them a further opportunity to set out their case --- not a peep!

"And remember that the Presidents of the Royal Colleges of Physicians, Psychiatrists, Paediatricians and GPs sat around a round table with the committee officers to give them a chance to present their criticisms and they didn't make a peep. When the chips are down there is nothing to say - the evidence was not there and even if you labelled on the benefit of the doubt it was not cost effective.

Spoke with colleagues today. This letter does not, I suspect, come from within an organisation like the Royal College of Psychiatry or similar.

It is lead by a retired psychiatrist who has had his nose put out of joint. Sour grapes. Along with quite a few other retired people who's reputations have perhaps taken a knock.

 

[JemPD]

but it does seem like it could become the prevalent interpretation of ME/CFS in neurology.

it already is, has been for several yrs now if my experience of various (very kind & sympathetic but totally sold on the FND thing) neurologists, over the last 8/9yrs

 

[Hutan]

7. Deviated from NICE recommendations of rehabilitation for related conditions such as chronic primary pain

NICE recently told me that they are incredibly proud of the guideline and think they did it right. They are also working on implementation and raising awareness of the GL, so I can't see them backtracking on it.

We are the biggest challenge to this paradigm, nothing has been clearly overturned yet. We are the only ones effectively pushing back at this. Not because we are effective at it, because no one else seems open to challenging it head-on. I'd say the main reason for this is that with so few medical professionals backing us who risk reputation suicide for going after the dogma, we can challenge openly without making the few physicians who help us back away, as they already made a choice that made them fringe, if not pariahs. MDs in general are not open to this, so any community where physicians are prominent will back off from this challenge, no matter the threat it represents.

There did seem to be a lot of pushback on the NICE Chronic primary pain guideline, including from clinicians. Is there any way that we could combine forces with those interested in getting that guideline reviewed? For those with connections in NICE, do you get the feeling that there would be people within NICE who might welcome pressure to review and improve that guideline, which is surely causing a lot of harm?

The best form of defence is attack, and all that.

 

[Solstice]

Judith Rosmalen, G Bleijenberg

And a certain H Knoop, but those are the big ones yeah.

 

[Hutan]

Knoop is there.