Sly Saint
Senior Member (Voting Rights)
she is also a member here @Katie - ME/CFS Med Ed
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Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al
- Thread starter Three Chord Monty
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AknaMontes
Senior Member (Voting Rights)
i reported the comment as offensive, explaining why as a person with M.E.
Well, for example, from that anomalies article:
“PW…receives personal consultancy fees from Swiss Re reinsurance company”
Attachments
Tom Kindlon
Senior Member (Voting Rights)
Yes, sorry I meant to add that and a link to the thread about her website and blog
ME/CFS Medical Education Campaign UK - UK website and blog by Katie Johnstone
Hoopoe
Senior Member (Voting Rights)
In the paper, there is this box:
Now let's look at some of these items in detail:
There is an important omission here which is that exercise makes these abnormalities appear or worses their severity. Since there have now been many papers describing this phenomenon, it should be uncontroversial. And it's very relevant in any discussion about GET.
But it's not mentioned because this would show that the decision in new NICE guidelines to stop recommending GET is sensible.
Also not mentioned here is the uncontroversial fact that severe large reviews and general sentiment among patients and experts is that PEM should be a required symptom in diagnostic criteria. White might not agree but it doesn't change the fact that a lot of people think otherwise.
Yes because of the misleading CBT/GET studies and the weird illness models that claim the illness is perpetuated by thoughts and behaviour. After the IOM report, the CBT/GET people seem to have toned down this rethoric. They should take some responsibility and admit this has contributed to disbelief and ridicule. It's hard to imagine a better way to promote ridicule by depicting a DISABLING illness as being caused by thoughts and behaviour. This is something second class comedians would say to make a joke.
Patients clearly don't agree to CBT/GET being recommended. If the author were serious about collaboration they would not be trying to undo the new NICE guideline.
This constructs the harm as something only experienced by patients not being guided by a professional, but this is wishful thinking. The independent data on harms shows widespread harm and no sign of this having anything to do with a lack of professional involvement. So this is actually a controversial take, and NICE does not agree with it.
NICE says there's no evidence they benefit anyone, so this claim is clearly controversial.
One could say this box is quite controversial.
Now let's look at some of these items in detail:
There is an important omission here which is that exercise makes these abnormalities appear or worses their severity. Since there have now been many papers describing this phenomenon, it should be uncontroversial. And it's very relevant in any discussion about GET.
But it's not mentioned because this would show that the decision in new NICE guidelines to stop recommending GET is sensible.
Also not mentioned here is the uncontroversial fact that severe large reviews and general sentiment among patients and experts is that PEM should be a required symptom in diagnostic criteria. White might not agree but it doesn't change the fact that a lot of people think otherwise.
Yes because of the misleading CBT/GET studies and the weird illness models that claim the illness is perpetuated by thoughts and behaviour. After the IOM report, the CBT/GET people seem to have toned down this rethoric. They should take some responsibility and admit this has contributed to disbelief and ridicule. It's hard to imagine a better way to promote ridicule by depicting a DISABLING illness as being caused by thoughts and behaviour. This is something second class comedians would say to make a joke.
Patients clearly don't agree to CBT/GET being recommended. If the author were serious about collaboration they would not be trying to undo the new NICE guideline.
This constructs the harm as something only experienced by patients not being guided by a professional, but this is wishful thinking. The independent data on harms shows widespread harm and no sign of this having anything to do with a lack of professional involvement. So this is actually a controversial take, and NICE does not agree with it.
NICE says there's no evidence they benefit anyone, so this claim is clearly controversial.
One could say this box is quite controversial.
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Jonathan Edwards
Senior Member (Voting Rights)
⇒ Treatments for CFS/ME should be negotiated between
healthcare professionals and patients and should always be
delivered collaboratively.
I would also strongly contest this. It reveals just how patronising the authors are.
There is nothing to be 'negotiated' about treatments. The job of the health care professional is to offer what they believe are useful treatments, based on evidence, no more. The decision to take up a treatment is ENTIRELY a matter for the patient. There is absolutely nothing to 'negotiate'. The healthcare professionals are paid to provide a service. The patient has no obligation to offer anything in exchange - which is what negotiation means.
This is an admission of a totally outdated and inappropriate view of delivering healthcare.
And nothing is to be 'delivered collaboratively'. It is to be delivered competently by the professional.
The whole concept of 'shared decision making' is in reality the opposite of what it is billed as. It is just a softer form of coercion.
healthcare professionals and patients and should always be
delivered collaboratively.
I would also strongly contest this. It reveals just how patronising the authors are.
There is nothing to be 'negotiated' about treatments. The job of the health care professional is to offer what they believe are useful treatments, based on evidence, no more. The decision to take up a treatment is ENTIRELY a matter for the patient. There is absolutely nothing to 'negotiate'. The healthcare professionals are paid to provide a service. The patient has no obligation to offer anything in exchange - which is what negotiation means.
This is an admission of a totally outdated and inappropriate view of delivering healthcare.
And nothing is to be 'delivered collaboratively'. It is to be delivered competently by the professional.
The whole concept of 'shared decision making' is in reality the opposite of what it is billed as. It is just a softer form of coercion.
Kitty
Senior Member (Voting Rights)
Yep. And continued care (for everything, not just ME/CFS) being contingent on the patient's co-operation with said coercive approach.
This!
There are over 70 peer-reviewed publications documenting objective evidence of an abnormal response to exercise challenges in ME/CFS - immune, neurological and cognitive, autonomic, metabolic and energy metabolism, gene expression, oxidative stress, etc. That evidence directly undermines the ME/CFS BPS disease theory but is consistently ignored or downplayed.
That objective evidence also underscores the fundamental problem with using criteria in studies of exercise in ME/CFS that do not require PEM.
Also worth noting... The Anomalies paper lists the 2016 evidence review by Smith and the 2022 Chou review as meta-analyses published since 2007 that support their positions on CBT and GET.
This 2016 review was a reanalysis called for by US advocates of the 2015 Smith evidence review (also cited), to examine the impact of case definition on their conclusions. The addendum concluded the following:
"This addendum has delineated differences in treatment effectiveness and harms according to case definitions, highlighting studies that used the Oxford (Sharpe, 1991) case definition and how these studies impacted our conclusions... Our sensitivity analysis would result in a downgrading of our strength of evidence on several outcomes which can be attributed to the decrease in power, dominance of one large trial, or lack of trials using criteria other than the Oxford (Sharpe, 1991) case definition for inclusion. Blatantly missing from this body of literature are trials evaluating effectiveness of interventions in the treatment of individuals meeting case definitions for ME or ME/CFS."
Regarding the 2022 paper by Chou - CDC decided to not publish that review because of broad concerns with its conduct but they did post it on their website. That review stated"
"However, stratified analyses based on case definitions were limited by the small number of trials and few trials used more current ME/CFS case definitions (including definitions requiring presence of post-exertional malaise); moreover, trials may not have evaluated patients with more severe ME/CFS. Therefore,
the applicability of findings to patients with severe ME/CFS, ME/CFS diagnosed using more current case definitions, or post-exertional malaise was uncertain"
Both reviews equated "more disabled populations" or "severe ME/CFS" to populations selected with criteria requiring PEM. But Oxford patients without PEM are not less severe cases of ME/CFS. They don't have ME/CFS.the applicability of findings to patients with severe ME/CFS, ME/CFS diagnosed using more current case definitions, or post-exertional malaise was uncertain"
Dolphin
Senior Member (Voting Rights)
@cassava7 did great work giving a breakdown of the authors of the 8 errors paper.
This is an update to @cassava7 ’s post with Chalder added (she was omitted in error):
===
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: 29
2. USA: 7
3. AU: 3
4. CA, DE*, NL, NO: 2
5. CZ, DK, FR, IT: 1
*Germany (Deutschland)
Psychiatrists & psychologists specializing in psychosomatic medicine and/or MUS
Susan Abbey (University of Toronto, CA)
Trudie Chalder (King’s College London, UK)
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)
This is an update to @cassava7 ’s post with Chalder added (she was omitted in error):
===
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: 29
2. USA: 7
3. AU: 3
4. CA, DE*, NL, NO: 2
5. CZ, DK, FR, IT: 1
*Germany (Deutschland)
Psychiatrists & psychologists specializing in psychosomatic medicine and/or MUS
Susan Abbey (University of Toronto, CA)
Trudie Chalder (King’s College London, UK)
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)
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Therapist: You've been diagnosed with Chronic Fatigue Syndrome. We have two therapies on offer to treat this, so this session is for us to negotiate which one you will do. They're called Cognitive Behaviour Therapy and Graded Exercise Therapy.
pwME: Sounds impressive. Which one's more effective?
Therapist: Well, they're both effective for some people in reducing their fatigue.
pwME: So how do I know whether I'm one of the lucky ones who gets better?
Therapist: I didn't say you'd get better, but it might reduce your fatigue.
pwME: Do some people get worse?
Therapist: Well, we don't really know. Some patients in surveys say they do, but you can't trust surveys.
pwME: So do some of your patients get worse?
Therapist: Well, we don't keep records of that, so we don't really know. But some patients' fatigue improves. It's important to be positive.
pwME: But what about my other symptoms. What about my pain, and crashes, and headaches, nausea, sore throats, and dizziness...
Therapist: Oh, you'll have to see your GP about those. We don't treat other symptoms. But your fatigue might improve.
pwME: Will it get me back to work.
Therapist: Well no, probably not, but your fatigue might improve.
pwME: But it might get worse and I might get sicker...
Therapist: Well, all I can do is recommend our treatment. We have a lot of success. But this is a negotiation, it's for you to decide.
pwME: Get stuffed.
pwME: Sounds impressive. Which one's more effective?
Therapist: Well, they're both effective for some people in reducing their fatigue.
pwME: So how do I know whether I'm one of the lucky ones who gets better?
Therapist: I didn't say you'd get better, but it might reduce your fatigue.
pwME: Do some people get worse?
Therapist: Well, we don't really know. Some patients in surveys say they do, but you can't trust surveys.
pwME: So do some of your patients get worse?
Therapist: Well, we don't keep records of that, so we don't really know. But some patients' fatigue improves. It's important to be positive.
pwME: But what about my other symptoms. What about my pain, and crashes, and headaches, nausea, sore throats, and dizziness...
Therapist: Oh, you'll have to see your GP about those. We don't treat other symptoms. But your fatigue might improve.
pwME: Will it get me back to work.
Therapist: Well no, probably not, but your fatigue might improve.
pwME: But it might get worse and I might get sicker...
Therapist: Well, all I can do is recommend our treatment. We have a lot of success. But this is a negotiation, it's for you to decide.
pwME: Get stuffed.
Dolphin
Senior Member (Voting Rights)
Very good. And I’ve heard people in England say they felt they needed to do CBT or GET to keep their GP happy/keep in with their GP.
Edited: And of course children/young people and their families can feel coerced so they don’t face child protection procedures and the like.
And occasionally that can happen with adults e.g. Sophia Mirza.
Hoopoe
Senior Member (Voting Rights)
It's odd that so many people specializing in an unrelated condition (FND) would care so much about guidelines for ME/CFS.
Not so odd if they think ME/CFS is a form of FND = Conversion disorder.
Hoopoe
Senior Member (Voting Rights)
And why would they think that?
As far as I know, there isn't any credible evidence for that. Nor is there any for the kind of "software problem" they evoke in FND.
I'm pretty sure most of these FND people have published very little to nothing on ME/CFS. I also doubt that they have regular contact with proper ME/CFS patients.
Dolphin
Senior Member (Voting Rights)
I get the impression in my country if you have ME/CFS and go to a neurologist particularly if you don't already have a diagnosis, there is a good chance you will be diagnosed these days with functional neurological disorder. So they would have some contact with patients.
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Binkie4
Senior Member (Voting Rights)
From the ME Association fb page
"Following on from publication of the paper this week which opposes the recommendations in the new NICE guideline re downgrading CBT and removing GET >>
If anyone is interested in looking at the way in which the "abnormal illness beliefs and behaviour" model of causation and management of ME/CFS, and the use of CBT and GET, has been debated over the years this is good short review from back in 2017 - when the first (2007) NICE guideline was still in force
Dr Charles Shepherd
Hon Medical Adviser, MEA"
Link to the article:https://core.ac.uk/download/pdf/966...H-qDv1gxmReLNg0_1-xBR3cTu5wOw3ASfQfQ_RCxLzlLE
edit: link changed to one that should work
"Following on from publication of the paper this week which opposes the recommendations in the new NICE guideline re downgrading CBT and removing GET >>
If anyone is interested in looking at the way in which the "abnormal illness beliefs and behaviour" model of causation and management of ME/CFS, and the use of CBT and GET, has been debated over the years this is good short review from back in 2017 - when the first (2007) NICE guideline was still in force
Dr Charles Shepherd
Hon Medical Adviser, MEA"
Link to the article:https://core.ac.uk/download/pdf/966...H-qDv1gxmReLNg0_1-xBR3cTu5wOw3ASfQfQ_RCxLzlLE
edit: link changed to one that should work
Dolphin
Senior Member (Voting Rights)
Despite having Facebook, that link doesn't seem to work for me. But it is presumably this
https://core.ac.uk/download/pdf/96679012.pdf