ME/CFS Skeptic
Senior Member (Voting Rights)
I'm considering to change the name of my blog to 'Tacks' Take'
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
CBT combined with music therapy for chronic fatigue following Epstein-Barr virus infection in adolescents: a feasibility study, 2020, Wyller et al
- Thread starter Dolphin
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Kalliope
Senior Member (Voting Rights)
Trial By Error: Letter to BMJ Paediatrics Open About that CBT-Music Therapy Study
I sent the following letter today to the editor-in-chief of BMJ Paediatrics Open–Imti Choonara, Emeritus Professor in Child Health at University of Nottingham. I cc’d Fiona Godlee, editorial director of BMJ, to alert her to the distressing news that yet another one of her high-profile journals has published more research from the CBT ideological brigades that violates core scientific principles.
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Under the circumstances, BMJ Paediatrics Open should temporarily withdraw the paper and assign it out again for another review. Any new peer reviewer must promise to read beyond the abstract, and the review must include scrutiny of the trial documents as well as the paper. Should the new review and BMJ Paediatrics Open’s own examination of the matter confirm major discrepancies between what the investigators promised and what they published, the study should be retracted.
The letter is signed by
Jonathan C.W. Edwards, MD
Mady Hornig, MA, MD
Vincent R. Racaniello, PhD
John Swartzberg, MD
David Tuller, DrPH
I sent the following letter today to the editor-in-chief of BMJ Paediatrics Open–Imti Choonara, Emeritus Professor in Child Health at University of Nottingham. I cc’d Fiona Godlee, editorial director of BMJ, to alert her to the distressing news that yet another one of her high-profile journals has published more research from the CBT ideological brigades that violates core scientific principles.
...
Under the circumstances, BMJ Paediatrics Open should temporarily withdraw the paper and assign it out again for another review. Any new peer reviewer must promise to read beyond the abstract, and the review must include scrutiny of the trial documents as well as the paper. Should the new review and BMJ Paediatrics Open’s own examination of the matter confirm major discrepancies between what the investigators promised and what they published, the study should be retracted.
The letter is signed by
Jonathan C.W. Edwards, MD
Mady Hornig, MA, MD
Vincent R. Racaniello, PhD
John Swartzberg, MD
David Tuller, DrPH
rvallee
Senior Member (Voting Rights)
Barry
Senior Member (Voting Rights)
Absolutely.
I don't know this expression. what's it mean?
Kalliope
Senior Member (Voting Rights)
chef’s kiss
[ shefs kis ]
WHAT DOES CHEF'S KISS MEAN?
Chef's kiss is a gesture and expression meant to show something is perfect or excellent. The gesture is made by pinching the fingers and thumb of one hand together (often in an OK sign), kissing them, and then tossing them dramatically away from the lips. Its tone can be sincere or ironic.
https://www.dictionary.com/e/slang/chefs-kiss/
Barry
Senior Member (Voting Rights)
As in "Perfecto!".
InitialConditions
Senior Member (Voting Rights)
I had seen this thread but not read it. I saw the article and the review history last night. "I've not read past the abstract". I am still fuming.
What calms me down is knowing we have people like David, Jonathan and Michiel (among others) to set the record straight.
What calms me down is knowing we have people like David, Jonathan and Michiel (among others) to set the record straight.
InitialConditions
Senior Member (Voting Rights)
I wonder if Dr Loades realises her fellow peer-reviewer did not bother to read past the absract? It makes a mockery of the whole system.
Kalliope
Senior Member (Voting Rights)
Blog post from Nina E. Steinkopf
Wyller's hypothesis from 2007 is that CFS / ME is a sustained arousal stress response and that personality, emotions and psychological trauma contribute to the development of the disease. The hypothesis is still not proved. Here is an overview of 39 scientific articles that Wyller has published or has co-authored. As far as I can see, the only requirement is that the study participants have had unexplained fatigue for more than 3 or 6 months, with no requirements for any other symptoms. Can this be called ME-research?
See an overview here: Wyller: articles and criteria.
"ME-ekspert" forsker ikke på ME
English version: "ME expert" is not researching ME
Wyller's hypothesis from 2007 is that CFS / ME is a sustained arousal stress response and that personality, emotions and psychological trauma contribute to the development of the disease. The hypothesis is still not proved. Here is an overview of 39 scientific articles that Wyller has published or has co-authored. As far as I can see, the only requirement is that the study participants have had unexplained fatigue for more than 3 or 6 months, with no requirements for any other symptoms. Can this be called ME-research?
See an overview here: Wyller: articles and criteria.
"ME-ekspert" forsker ikke på ME
English version: "ME expert" is not researching ME
rvallee
Senior Member (Voting Rights)
Minor point but I object to calling this a hypothesis, it is unfalsifiable and therefore merely an assumption presented without any evidence. There is simply no basis for something so hollow and unproven to carry any weight whatsoever in making medical decisions or in guiding research funding. Wyller is not a credible expert on the topic, this claim is laughable.
And indeed, no, this is not ME research, the definitions used are simply invalid. An important point to make and repeat. They are describing an apple but calling it a banana. Makes no sense whatsoever.
Ravn
Senior Member (Voting Rights)
Overly broad inclusion criteria are an important issue that needs to be highlighted - and Nina Steinkopf does this well here - but, as I've been harping on about in the LP study thread, we need to be wary of Wyller and his likes becoming more crafty. The claim for the proposed LP study is that they're going to use the CCC which will allow them to argue that their results do apply to ME. It'll lend them a lot of undeserved credibility and will pull the wool over the eyes of anybody not already intimately familiar with their way of working.
The danger is that they'll operationalise the CCC to suit themselves and in a way we wouldn't recognise if we ever got to read an accurate description of how they did it, which of course we won't. The published study will just have a brief sentence saying that strict CCC were applied. Only we will suspect that their "CCC" are based on the sort of post-exertional fatigue common in many conditions, and not on PEM.
I rather suspect the use of conveniently adapted forms of "CCC" will become more common as a way to forestall criticism from our side.
I realized this hadn't been replied to. The research council did write a reply to Skei's claims, google translate: https://translate.google.com/transl...att/i/K38Gq7/pasienter-kan-styrke-forskningen
Norwegian: https://www.aftenposten.no/meninger/debatt/i/K38Gq7/pasienter-kan-styrke-forskningen
Unfortunately, as can be seen in this piece in the newspaper Varden (mentioned in the LP study thread to be included in Flottorp's letter to NAFKAM where she asks them to remove the warnings about LP in Norway), it is Skei's story that is remembered, not that the research council has stated they were not pressured by patient organizations. I also like how they clarify that they study Skei is talking about was not given high ranks for its quality. They could perhaps have been more clear, but it's what we got.
Esther12
Senior Member (Voting Rights)
Thank you for that. That's really bleak. Things seems so creepy in Norway - best wishes to all the patients there. I wish there was something we could do to help... or at least prevent things getting worse.
Andy
Retired committee member
rvallee
Senior Member (Voting Rights)
It's pretty clear that if David did not publish these communications openly and invite others to weigh in to put pressure on them they would simply never bother to reply. They do the same thing every time, as if the problem goes away if they pretend it doesn't exist. Which really says a lot about their concerns for patient safety, that it is effectively nonexistent.
And this is all adding to the simple fact that there is no such thing as the crisis of replicability. It's a crisis of validity. Most experiments cannot be replicated because they were never valid in the first place, should have been weeded out at many points during the process. And this blatant rejection of the gatekeepers of science to even bother paying attention to what they publish makes the point better than anything.
Basically this is the review process for clinical psychology, especially for anything about conversion disorder or magical psychological illness:
Kalliope
Senior Member (Voting Rights)
Wyller has written a reply to an opinion piece by Sigmund Olafsen (shared in the News from Scandinavia thread here). Once again he defends the research supporting CBT as treatment for ME and even Lightning Process.
Claim # 1 - on lack of results - is easily refuted by a quick search in PubMed: At least seven randomized, controlled trials of individual CBT by ME have been conducted; in addition, there are several studies of closely related variants such as group-based CBT, family-based CBT, self-instruction programs based on CBT principles, etc.
The studies show consistently positive effects on symptoms and function in both adults and adolescents, and further document that the effect can last for several years, that full healing is possible in some patients, and that the risk of side effects is very low.
...
The studies of CBT have been conducted by several independent, well-reputed research groups, and published in highly ranked journals. The PACE study (published in the Lancet) has been heavily criticized, but the responsible researchers have convincingly rejected the criticism, an independent review acquitted the researchers of ethical overtravel, and the original article was not withdrawn by the journal editorial.
...
For the sake of the many suffering ME patients, all good efforts should rather be spent on: a) Providing a good CBT offering to anyone who can benefit from this technique, and b) Supporting research aimed at researching the effect of CBT-related methods, such as the "Lightning Process".
Feil om kognitiv atferdsterapi ved ME
google translation: Mistakes regarding cognitive behaviour therapy for ME
Claim # 1 - on lack of results - is easily refuted by a quick search in PubMed: At least seven randomized, controlled trials of individual CBT by ME have been conducted; in addition, there are several studies of closely related variants such as group-based CBT, family-based CBT, self-instruction programs based on CBT principles, etc.
The studies show consistently positive effects on symptoms and function in both adults and adolescents, and further document that the effect can last for several years, that full healing is possible in some patients, and that the risk of side effects is very low.
...
The studies of CBT have been conducted by several independent, well-reputed research groups, and published in highly ranked journals. The PACE study (published in the Lancet) has been heavily criticized, but the responsible researchers have convincingly rejected the criticism, an independent review acquitted the researchers of ethical overtravel, and the original article was not withdrawn by the journal editorial.
...
For the sake of the many suffering ME patients, all good efforts should rather be spent on: a) Providing a good CBT offering to anyone who can benefit from this technique, and b) Supporting research aimed at researching the effect of CBT-related methods, such as the "Lightning Process".
Feil om kognitiv atferdsterapi ved ME
google translation: Mistakes regarding cognitive behaviour therapy for ME
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