NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

Jonathan Edwards said:
The irony is that the charge of competing interest rests entirely on those writing the Lancet comment. I have no competing interest at all.

My opinion of the PACE trial was not influenced by patients. It was created by listening to Dr Peter White presenting his view of patients being anti-science, to an audience including a lot of patients. (Tact was not a strong point.) Starting off by flashing up a single data slide with a truncated Y axis and a minuscule difference in subjective scores between test and control told me all I needed to know.
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Can you ask the authors/The Lancet for a public apology @Jonathan Edwards ?
 
It is a disgrace the way they have spoken about you and your evidence. When they attack someone with your credentials and no career to lose it gives an insight into what they are doing to researchers who are new to the field. We have always known that they are the ones driving good scientists from the field but this is out there in the open.

I hope it is a consolation to you that you are on the side of science and justice. That someone with your background as a researcher and doctor could look at papers and see what we see reassures us that we are not deluded.

After decades of feeling as if I was living in some strange world where everyone saw day when I saw night the sheer relief I felt was overwhelming.
 
If anyone looking up reference 18 from Flottorp et al is still reading it may be worth point out something raised by a member on another thread.

What we say here is open and an honest expression of legitimate concerns about research quality.

In contrast those who have sought to distort the process of peer review and evidence evaluation in order to protect vested interests in therapist-delivered treatments have used secret messages to officials at NICE that only came to light through FOI requests. It seems highly likely that various people with 'positive views' about these therapies have been gerrymandering behind the scenes for the last several years. Also, events at Cochrane have been entirely opaque despite assurances that this would not be the case.
 
I sent them this:

Dear Drs Flottorp, Brurberg, Knoop, Fink, Wyller and Garner,

I was saddened to see the continued attempts to discredit NICE in the Comment on the ME/CFS Guideline in the Lancet and associated messages on social media. This will perpetuate distrust between patient and medical communities. It reveals the profound lack of understanding of research methodology within the Cochrane community. (Maybe time people knew.)

I was unimpressed by the transparent insinuation that as an expert witness to the NICE committee that my view was biased – presumably reflecting some imagined vested interest. None of this matters to me – I am a retired rheumatologist who studies Leibniz – but it matters to standards in medical science. The vested interests are on your side – including direct interest in the therapies and research and in the reputation of Cochrane reviews such as those co-authored with Larun (who if I remember rightly has expressed an evangelical approach to the value of physio).

It may have been unwise to include as your reference 18 an active thread on the S4ME site. Readers can see that my interest has been entirely in evidence quality, with no favours to anyone. They may also see some interesting new posts!! (Note that the patient community has been open throughout, unlike those associated with Royal Colleges sending covert messages trying to manipulate NICE into changing tack – the actual corruption.) And if medics openly discussing research quality with patients is ‘disloyalty’ (as Michael Sharpe put it) heaven help us.

The reasons why the NICE committee were right to downgrade evidence on therapist-delivered treatments are clearly set out in my expert witness testimony. There is nothing difficult about the arguments. They reflect established fact and common sense. In my presentation, I included a slide, carrying Cochrane approval, indicating the main point – that ‘If you are reading a study that is un-blinded, with subjective outcome measures, then you may as well stop reading it and move on.’

My only regret is that at the time I had not seen Heins et al. (2013) J. Psychosomatic Res. 75, 3, 235-241 which crystallises how naive investigators are in this field. The suggestion seems to be that people feel better because they believe they are doing more - when in fact they aren’t. Any sensible person can see how ridiculous this is as a useful outcome. And a lot of people with ME/CFS are sensible.

Yes, I had formulated a view on the evidence before being asked. My view was formed after hearing Peter White making a presentation on PACE and then reading the papers. PACE shows that, even if there is a specific effect from these treatments, which looks unlikely in the context of high risk of bias, it is too small to be of value (almost certainly too small for therapists to reliably identify in routine practice). The change from 2007-2021 is simple – the evidence now indicates that there is no worthwhile effect – as emphasised at the NICE Round Table discussion.

What has shocked me most is how pervasive the lack of rigour is in the Cochrane circuit for non-pharmacological treatment, and also to see physician colleagues buy in to poor evidence for political reasons. Lynne Turner-Stokes was one of our trainees. I am disappointed to see her make groundless claims now. At the Round Table, contributions from objectors consisted mostly of sales pitches for their pet disciplines - all very tawdry. I am glad to be out of it but the public deserve better.


Yours sincerely,
Jonathan Edwards
Professor Emeritus
University College London
 
Thank you Jonathan. Excellent letter. I hope everyone will share it widely on social media.

In case anyone is wondering about this:
Jonathan Edwards said:
Note that the patient community has been open throughout, unlike those associated with Royal Colleges sending covert messages trying to manipulate NICE into changing tack – the actual corruption.
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the covert messages were obtained under FOI, posted here (members only)
and on this blog:
https://domsalisbury.github.io/mecfs/nice-mecfs-guideline-pause/
 
If so much criticism is of CBT/GET here, it's because of all the different schools of thought, its theoretical foundation is one of the most absurd, the quality of science the most consistently flawed despite significant funding and credentialed authors, and also the most widely applied treatment while also being harmful.

One can find stuff that is more harmful, even more absurd, even more incompetent, but it's all fringe with hardly any influence. There is nothing that comes close to CBT/GET in having so many problems at once, across many healthcare systems, for so long.

I have no doubt that CBT/GET people won't listen to any criticism because it's exactly viewing patients as having no useful contributions to make that made this disaster possible.
 
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TiredSam said:
If CBT and GET worked we'd all be doing it. Why on earth do they think we wouldn't?
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Indeed, many of us tried some form of psycho-behavioural approach, voluntarily, and long before it was even recommended.

But we are portrayed as unreliable witnesses to our own lives. Unless we agree with the psycho-behaviouralists, of course. Then we are 'good' patients, whose word should be taken at face value, and anybody daring to question it is a scumbag.
 
Jonathan Edwards said:
I sent them this:

Dear Drs Flottorp, Brurberg, Knoop, Fink, Wyller and Garner,

I was saddened to see the continued attempts to discredit NICE in the Comment on the ME/CFS Guideline in the Lancet and associated messages on social media. This will perpetuate distrust between patient and medical communities. It reveals the profound lack of understanding of research methodology within the Cochrane community. (Maybe time people knew.)

I was unimpressed by the transparent insinuation that as an expert witness to the NICE committee that my view was biased – presumably reflecting some imagined vested interest. None of this matters to me – I am a retired rheumatologist who studies Leibniz – but it matters to standards in medical science. The vested interests are on your side – including direct interest in the therapies and research and in the reputation of Cochrane reviews such as those co-authored with Larun (who if I remember rightly has expressed an evangelical approach to the value of physio).

It may have been unwise to include as your reference 18 an active thread on the S4ME site. Readers can see that my interest has been entirely in evidence quality, with no favours to anyone. They may also see some interesting new posts!! (Note that the patient community has been open throughout, unlike those associated with Royal Colleges sending covert messages trying to manipulate NICE into changing tack – the actual corruption.) And if medics openly discussing research quality with patients is ‘disloyalty’ (as Michael Sharpe put it) heaven help us.

The reasons why the NICE committee were right to downgrade evidence on therapist-delivered treatments are clearly set out in my expert witness testimony. There is nothing difficult about the arguments. They reflect established fact and common sense. In my presentation, I included a slide, carrying Cochrane approval, indicating the main point – that ‘If you are reading a study that is un-blinded, with subjective outcome measures, then you may as well stop reading it and move on.’

My only regret is that at the time I had not seen Heins et al. (2013) J. Psychosomatic Res. 75, 3, 235-241 which crystallises how naive investigators are in this field. The suggestion seems to be that people feel better because they believe they are doing more - when in fact they aren’t. Any sensible person can see how ridiculous this is as a useful outcome. And a lot of people with ME/CFS are sensible.

Yes, I had formulated a view on the evidence before being asked. My view was formed after hearing Peter White making a presentation on PACE and then reading the papers. PACE shows that, even if there is a specific effect from these treatments, which looks unlikely in the context of high risk of bias, it is too small to be of value (almost certainly too small for therapists to reliably identify in routine practice). The change from 2007-2021 is simple – the evidence now indicates that there is no worthwhile effect – as emphasised at the NICE Round Table discussion.

What has shocked me most is how pervasive the lack of rigour is in the Cochrane circuit for non-pharmacological treatment, and also to see physician colleagues buy in to poor evidence for political reasons. Lynne Turner-Stokes was one of our trainees. I am disappointed to see her make groundless claims now. At the Round Table, contributions from objectors consisted mostly of sales pitches for their pet disciplines - all very tawdry. I am glad to be out of it but the public deserve better.


Yours sincerely,
Jonathan Edwards
Professor Emeritus
University College London
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So clearly stated. No messing about. Right on point. Your efforts on behalf of patients everywhere are sincerely appreciated. Thank you, @Jonathan Edwards. :thumbup:
 
Jonathan Edwards said:
I sent them this:

Dear Drs Flottorp, Brurberg, Knoop, Fink, Wyller and Garner,

I was saddened to see the continued attempts to discredit NICE in the Comment on the ME/CFS Guideline in the Lancet and associated messages on social media. This will perpetuate distrust between patient and medical communities. It reveals the profound lack of understanding of research methodology within the Cochrane community. (Maybe time people knew.)

I was unimpressed by the transparent insinuation that as an expert witness to the NICE committee that my view was biased – presumably reflecting some imagined vested interest. None of this matters to me – I am a retired rheumatologist who studies Leibniz – but it matters to standards in medical science. The vested interests are on your side – including direct interest in the therapies and research and in the reputation of Cochrane reviews such as those co-authored with Larun (who if I remember rightly has expressed an evangelical approach to the value of physio).

It may have been unwise to include as your reference 18 an active thread on the S4ME site. Readers can see that my interest has been entirely in evidence quality, with no favours to anyone. They may also see some interesting new posts!! (Note that the patient community has been open throughout, unlike those associated with Royal Colleges sending covert messages trying to manipulate NICE into changing tack – the actual corruption.) And if medics openly discussing research quality with patients is ‘disloyalty’ (as Michael Sharpe put it) heaven help us.

The reasons why the NICE committee were right to downgrade evidence on therapist-delivered treatments are clearly set out in my expert witness testimony. There is nothing difficult about the arguments. They reflect established fact and common sense. In my presentation, I included a slide, carrying Cochrane approval, indicating the main point – that ‘If you are reading a study that is un-blinded, with subjective outcome measures, then you may as well stop reading it and move on.’

My only regret is that at the time I had not seen Heins et al. (2013) J. Psychosomatic Res. 75, 3, 235-241 which crystallises how naive investigators are in this field. The suggestion seems to be that people feel better because they believe they are doing more - when in fact they aren’t. Any sensible person can see how ridiculous this is as a useful outcome. And a lot of people with ME/CFS are sensible.

Yes, I had formulated a view on the evidence before being asked. My view was formed after hearing Peter White making a presentation on PACE and then reading the papers. PACE shows that, even if there is a specific effect from these treatments, which looks unlikely in the context of high risk of bias, it is too small to be of value (almost certainly too small for therapists to reliably identify in routine practice). The change from 2007-2021 is simple – the evidence now indicates that there is no worthwhile effect – as emphasised at the NICE Round Table discussion.

What has shocked me most is how pervasive the lack of rigour is in the Cochrane circuit for non-pharmacological treatment, and also to see physician colleagues buy in to poor evidence for political reasons. Lynne Turner-Stokes was one of our trainees. I am disappointed to see her make groundless claims now. At the Round Table, contributions from objectors consisted mostly of sales pitches for their pet disciplines - all very tawdry. I am glad to be out of it but the public deserve better.


Yours sincerely,
Jonathan Edwards
Professor Emeritus
University College London
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Brilliant. And particularly glad for seeing what is in the last paragraph said. If only this, and indeed the penultimate line, would act as a wake-up call/look in the mirror to get a few to think about whether that which might become habit is how it is supposed to be.
 
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Suffolkres said:
You are of course you are correct, at the end of the day.
If all that they 'sell' and provide on offer is not acceptable, they should have contract terminated and if they mess up withdrawn with penalties.
It's essentially a market place so they can be forced to wise up and deliver ..... or else!
In pour area these CIC's are gobbling up 'services" and reforming and reframing them on a 'business model not 'patient need' line.

That does not provide either good value for the money and little patient satisfaction.

The last thing they will agree to is co production atm.
Our petitioning in Suffolk was partly on making a business case for better alternative approach.
It was bartered and resulted in the service run by Luis Nacul.
Any area will need to prepare a business case that will provide with value for money so the CCGs/Alliances will bite.
There has to be a better way forward for this!
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Is there a case study anywhere of what was involved and how this was done? Just thinking if this is a way forward whether we have somewhere that these things are collected for learning and building on purposes.
 
Jonathan Edwards said:
If anyone looking up reference 18 from Flottorp et al is still reading it may be worth point out something raised by a member on another thread.

What we say here is open and an honest expression of legitimate concerns about research quality.

In contrast those who have sought to distort the process of peer review and evidence evaluation in order to protect vested interests in therapist-delivered treatments have used secret messages to officials at NICE that only came to light through FOI requests. It seems highly likely that various people with 'positive views' about these therapies have been gerrymandering behind the scenes for the last several years. Also, events at Cochrane have been entirely opaque despite assurances that this would not be the case.
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trust them to go for the word 'beliefs'.

You sort of want to peel out that Mrs Merton classic line of "so what first attracted you to the millionaire Paul Daniels?" to say back to them.

There is a reason that one has to declare financial etc conflicts of interest. They tend to influence what you claim to believe in once they are big enough
 
Apologies for just popping in.

Some background for people new to the topic:

Commentary said:
Tuller D. Once again, the PACE authors respond to concerns with empty answers. Journal of Health Psychology. 2017;22(9):1118-1122. doi:10.1177/1359105317703788

Abstract

In their response to Geraghty, the PACE investigators state that they have “repeatedly addressed” the various methodological concerns raised about the trial.

While this is true, these responses have repeatedly failed to provide satisfactory explanations for the trial’s very serious flaws.

This commentary examines how the current response once again demonstrates the ways in which the investigators avoid acknowledging the obvious problems with PACE and offer non-answers instead—arguments that fall apart quickly under scrutiny.

(This is a commnentary on: White PD, Chalder T, Sharpe M, et al. Response to the editorial by Dr Geraghty. Journal of Health Psychology. 2017;22(9):1113-1117. doi:10.1177/1359105316688953 )
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Thread here.
 
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