Utsikt
Senior Member (Voting Rights)
I’m not able to tag Mark, but the Brurberg reference is available online. Although it doesn’t change the argument, because they didn’t find any evidence to include in their review!Vink said:
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al
Utsikt
Senior Member (Voting Rights)
Overall, there are many good points about how absurd the article is. But one argument sticks out like a sore thumb: that the people that recovered didn’t have ME/CFS because of the fact that they recovered. This argument is not central to the reasoning, it’s just one of many in favour of the same conclusion.
The chance or a misdiagnosis is high with the lax diagnostic criteria some BPS proponents like to use, but when we know that some recover, we can’t say that the people that do didn’t have ME/CFS in the first place.
The chance or a misdiagnosis is high with the lax diagnostic criteria some BPS proponents like to use, but when we know that some recover, we can’t say that the people that do didn’t have ME/CFS in the first place.
Hi Utsikt. You are correct but usually the people that recover have a far more contested diagnosis. Probably ongoing fatigue without post exertional malaise and sleep disturbance. Not saying it isn’t possible to recover with a barn door ME/CFS case but far less likely. A biomarker and some data would probably be the only thing to sort it all out.
That's not the claim.
Abstract said:
i.e. "And if [changing their mindset does lead to recovery], then the diagnosis of ME/CFS was simply wrong."
Thank you @Mark Vink and your co-author for this detailed debunking of the harmful opinion piece. I particularly like that you highlight Miller and Garner's role in Cochrane and their reliance on anecdote, not science. And that you looked closely into the references they used to prop up their fantasy. I also think it was important to point out the likelihod that many people who claim recovery using positive thinking brain training stuff didn't have ME/CFS.
I am still completely gobsmacked by Garner in particular's crusade on this that seems completely based in his own fantasy of his using his mind to overcome something he probably never had.
I am still completely gobsmacked by Garner in particular's crusade on this that seems completely based in his own fantasy of his using his mind to overcome something he probably never had.
I agree with that.
In the meantime, I'm really uncomfortable with an idea that recovery is rare in people who clearly meet ME/CFS criteria at 6 months. I don't think the evidence we have supports that.
@Trish said
I don't think we can say he probably didn't have ME/CFS - from what he said, his illness in those first six months could well have been ME/CFS. If so, he recovered naturally soon after, as many people do, no special mind powers required.
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Utsikt
Senior Member (Voting Rights)
I thought I saw more general statements than that (the argument is repeated in multiple sections), but I don’t have the energy to read it again now.
But the last quote is still wrong, because we don’t know what caused the recovery in any one person. So we can’t say that correlation between a change in mindset and recovery means that they didn’t have ME/CFS.
Theresa
Established Member (Voting Rights)
There is a new response to the BMJ article mostly from recovered patients in support of nervous system regulation.
Utsikt
Senior Member (Voting Rights)
It’s just a bunch of the usual suspects that want to tell you that recovery is possible if you just think differently and «calm your nervous system» or whatever. A fair few of them want to sell something. Schubiner is probably among the biggest red flags.There is a new response to the BMJ article mostly from recovered patients in support of nervous system regulation.
Wyva
Senior Member (Voting Rights)
I'm posting those names here so they come up in search results on S4ME, just for future reference.
Elizabeth Carlson
Recovered from ME/CFS
Kate Blake, Christine Cooper, Richard Forish, Sylvia Haasbroek, Jill Hermon, Jake Hollis, Peter Hope, Verena Hurst, Catherine Johns, Eleanor Kirby, Ebba Karlsson, Lisa Ginsburg Lewis, Kayla Murphy, Zsuzsa Pataki, Heather Stewart, Kirsti Tenniswood, Lindsay Vine, Rachel Whitfield, Ric Arseneau, Michael M. Dow, Jennifer L. Huggins, Rebecca Kennedy, Howard Schubiner
I recognize a few names but I also see a Hungarian one you probably don't know (Zsuzsa Pataki). I know her, she is one of those people who fully supported my advocacy, then turned against it. She is a psychologist and physiotherapist. She attributes her symptoms to the covid vaccine, was publicly campaigning against the vaccine (although saying she is not an anti-vaxxer), before joining my group. When I collected people's stories about how little help they get in healthcare and how CBT and GET are not therapies, she was one of the people who shared their story and whose story I sent to the Ministry.
Then one day she started telling people in my group how she recovered thanks to some mind-body thing. I remember she said something like she was in a privileged position (compared to us), because due to her profession she had access to very good professionals who helped her. And it is very much possible to recover (through mind-body stuff). So I banned her for spreading harmful misinformation. Awful that she ended up signing something like this. Just awful.
And it also explains why I'm extremely cautious about accepting help just from anyone.
Elizabeth Carlson
Recovered from ME/CFS
Kate Blake, Christine Cooper, Richard Forish, Sylvia Haasbroek, Jill Hermon, Jake Hollis, Peter Hope, Verena Hurst, Catherine Johns, Eleanor Kirby, Ebba Karlsson, Lisa Ginsburg Lewis, Kayla Murphy, Zsuzsa Pataki, Heather Stewart, Kirsti Tenniswood, Lindsay Vine, Rachel Whitfield, Ric Arseneau, Michael M. Dow, Jennifer L. Huggins, Rebecca Kennedy, Howard Schubiner
I recognize a few names but I also see a Hungarian one you probably don't know (Zsuzsa Pataki). I know her, she is one of those people who fully supported my advocacy, then turned against it. She is a psychologist and physiotherapist. She attributes her symptoms to the covid vaccine, was publicly campaigning against the vaccine (although saying she is not an anti-vaxxer), before joining my group. When I collected people's stories about how little help they get in healthcare and how CBT and GET are not therapies, she was one of the people who shared their story and whose story I sent to the Ministry.
Then one day she started telling people in my group how she recovered thanks to some mind-body thing. I remember she said something like she was in a privileged position (compared to us), because due to her profession she had access to very good professionals who helped her. And it is very much possible to recover (through mind-body stuff). So I banned her for spreading harmful misinformation. Awful that she ended up signing something like this. Just awful.
And it also explains why I'm extremely cautious about accepting help just from anyone.
I think it's worth adding for the record their 'competing interests', copied from the article.
Competing interests:
Elizabeth Carlson runs a personal blog focused on ME/CFS and Long Covid recovery with a paid programs guide and one affiliate link. Her portion of the proceeds is donated to ME/CFS research.
Peter Hope based near Munich offers professional health coaching services for people with ME/CFS through a multi-pronged approach informed by his own recovery experience.
Lindsay Vine, MPH, is a CFS recovery programs navigator and coach.
Rachel Whitfield is a leadership training consultant and is a volunteer co-chair of the Collaborative on Fatigue after Infection (COFFI)'s consumer advisory group, of which Prof. Paul Garner is also a member.
Dr. Jake Hollis is a clinical psychologist who works with people living with ME/CFS and Long Covid, which he recovered from himself.
Clinician Dr. Michael M. Dow, PsyD, has a private practice, providing psychodynamic oriented psychotherapy for people with chronic pain and others, as well as couples in Colorado. He is in full recovery himself from chronic migraines using mind-body techniques.
Clinician Jennifer L. Huggins, PsyD, is a Clinical Pain Psychologist and former, recovered chronic pain sufferer.
Clinician Dr. Rebecca Kennedy, MD is a family medicine physician and coach at Resilience Health Care, a private clinic that provides help for patients with neuroplastic symptoms. She frequently works with ME/CFS and Long Covid patients. She was the former lead of the long COVID clinic at Kaiser Permanente Northwest.
Jonathan Edwards
Senior Member (Voting Rights)
Google led me to this quote:
A man is judged by the company he keeps, and a company is judged by the men it keeps, and the people of Democratic nations are judged by the type and caliber of officers they elect.
WJH Boetker
All quite apt.
A man is judged by the company he keeps, and a company is judged by the men it keeps, and the people of Democratic nations are judged by the type and caliber of officers they elect.
WJH Boetker
All quite apt.
Nice, although I'm not sure the character of WJH Boetker bears much poking into. Wikipedia
Probably the authors of this paper would have no problem with the quote, it's just that they have different values by which they would judge a man and his company than many of us here have.
* Anthony Robbins? "He is the nation's #1 life and business strategist. Author of six internationally bestselling books, including the recent New York Times #1 best-seller MONEY: Master the Game and UNSHAKEABLE, Mr. Robbins has empowered more than 50 million people from 100 countries through his audio, video and life training programs."
As a 'success coach', it looks as though Boetker would have fitted right in with that lot with their competing interests.Wikipedia said:
Probably the authors of this paper would have no problem with the quote, it's just that they have different values by which they would judge a man and his company than many of us here have.
* Anthony Robbins? "He is the nation's #1 life and business strategist. Author of six internationally bestselling books, including the recent New York Times #1 best-seller MONEY: Master the Game and UNSHAKEABLE, Mr. Robbins has empowered more than 50 million people from 100 countries through his audio, video and life training programs."
InitialConditions
Senior Member (Voting Rights)
Many of these people — including Liz Carlson, Lindsay Vine, Rebecca Kennedy — are RecoveryGrift™ YouTubers and social media folk, recycling the same patient stories that often sound like some form of burnout, and selling their own or each other's courses. I'm suprised Raelan Agle hasn't included her name.
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InitialConditions
Senior Member (Voting Rights)
This is the 'fatigue psychologist' who wrote a critical response to the George Monbiot Guardian peice last October, then seemed to backtrack: https://www.theguardian.com/society...view-of-illness-doesnt-help-those-with-me-cfs
Edit: I've just seen that today he has a second article in Psychology Today, discussed here: https://www.s4me.info/threads/psych...g-of-me-cfs-and-long-covid-jake-hollis.42640/
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