Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

Binkie4 said:
David Putrino has posted on X heavily criticising BMJ article. Could someone who is on X ( I'm not) get this across here? I think we need all the support we can get. It's time the BPS lot learned that their time is past.
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Do you want a link to his criticism in this thread? If so, I believe that is what was in this earlier post,
Utsikt said:
Putrino has commented on SoMe:

https://threadreaderapp.com/thread/...gw_aem_0tXJ27WUy1LqrEpRrcRImg#google_vignette
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SNT Gatchaman said:
Excellent response from Dr Katharine Cheston (@kacheston) —
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Oh, that is a great response. Great use of the Uno reverse card (your beliefs are hurting me, not mine). It's so important for experts to chime in on this, this is very much appreciated from Dr Cheston.
Jonathan Edwards said:
This is the way homeopaths have always argued and most doctors have been trained to pick up that sort of bullshit, even if many of them allow themselves to backslide when it is convenient.
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Then I would contend that they have not properly been trained about it ;). POSIWID.
Deanne NZ said:
Chat on Twitter has turned to legal challenge. I doubt it would eventuate but I hope the fact that is has been raised by multiple people independently might give the opinion piece authors pause for thought.
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This is why I place most of the blame on the institutions supporting the quacks, and not the quacks themselves. The quacks cannot be sued, being incompetent and lying is not a crime, not even a minor one. It would be up to their employer to punish them, and given that they are just as guilty of incompetence indistinguishable from malice, I doubt they would, and no one will make them.

What the institutions have failed to do, though, is definitely liable for civil damages. They have, and continue to, behaved recklessly, promote blatant pseudoscience, whose harm is sometimes documented in their own publications. This is something that is liable. Plus, the quacks will retire and die, while those institutions will endure. The harm on their reputations will go on long after the quacks are all dead and no new ones are being trained.
Adrian said:
It does show there are big issues with the medical establishment in this country. Something that I suspect will be very slow to change. I feel the royal colleges should have been very embarrassed about their responses to NICE especially those backing LP - but they seem to be digging in.
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The Iron Law of Institutions said:
The people who control institutions care first and foremost about their power within the institution rather than the power of the institution itself. Thus, they would rather the institution "fail" while they remain in power within the institution than for the institution to "succeed" if that requires them to lose power within the institution.
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https://rationalwiki.org/wiki/Iron_law_of_institutions ;)
 
Andy said:
Latest comment, "The risk of blaming patients for their lack of recovery", by Michiel Tack

https://www.bmj.com/content/389/bmj.r977/rr-3

As excellent as always.
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A risk is the possibility of a negative consequence. So I would argue that blaming patients isn’t a risk of this article, because it has already happened. The risk would be that this article contributes to it happening for longer.

Edit: it’s still a great comment. I just think they could have gone further.
 
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A response from the alternative medicine practitioners: Rebecca Kennedy, family medicine physician and lead of the long COVID clinic at a large health system :(

I commend the authors for addressing the possibility of recovery from CFS/ME. As a U.S.-based primary care physician with over two decades of experience and more than 70,000 patient visits, I have seen clear patterns emerge—patients with chronic fatigue often experience overlapping symptoms such as chronic pain, POTS, IBS, and others, frequently without identifiable structural disease.
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That first sentence with the giveaway "CFS/ME".

For years, I pursued every biomedical treatment available, yet most patients did not improve. I felt terrible for these patients. It kept me up at night. This drove me to seek new answers. I searched for years to explain what we were missing in our current medical model. Eventually, I encountered the emerging neuroscience showing that chronic symptoms can result from dysregulated brain and nervous system signaling—not imagined, but very real changes in physiology driven by perceived threat at the unconscious level. And yes, changes in the biochemistry in the body as well, but also brain generated which is how our bodies are designed. These are revolutionary new ideas, and like any paradigm shift in thinking, it takes years to get into the mainstream. People are suffering now however, and we need to do everything we can to get these ideas out there.
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We've commented previously about the need for research into the psychology of medical practitioners when they are disempowered, credulous and vulnerable to pseudoscience: eg Modern Neuroscience™.

I was the lead of the long COVID clinic at a large health system. I assessed hundreds of patients with long COVID. I was nervous initially to talk to them about this new model. But I found that many said to me 'wow, this is the first thing a doctor has said to me that actually makes sense'. It is key to have complete compassion and understanding for their experience and then to explain the science. When you do that, many people respond favorably - despite this not being mainstream ideas. When physicians have just 10-20 minutes for an appointment, however, this sort of communication is tragically difficult to do. But by understanding the new science and changing the narrative, I have helped many people with long COVID and CFS/ME to restore their health and recover fully.
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Again with the "not mainstream" when it's been standard operating procedure for over 3 decades. Then taking credit when patients recover, likely spontaneously. And given the understanding of the new science and narrative-changing, why haven't all your patients recovered fully?

Rather than discounting stories of recovery as invalidating, we should study them with scientific curiosity. Recovery is not only possible—it is happening. People have been gaslit by the medical community for a long time. That is tragic and unacceptable.
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I agree with this - we absolutely should try and understand why so many people do recover in the early stages. Sadly I'm not confident we're interested in the same things to study though.

What we are saying here is not gaslighting. […] Now that there are solutions out there, we can use love and compassion for our patients to stop the suffering and direct research into these new areas so we can understand even more.
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This all sounds like something written by a certain 1950s pulp sci-fi author: "Love and Compassion - The Modern Science of Chronic Illness"
 
I thought this blatant confession of love-bombing (a brain-washing technique) was priceless:

"It is key to have complete compassion and understanding for their experience and then to explain the science. When you do that, many people respond favorably - despite this not being mainstream ideas."
 
SNT Gatchaman said:
A response from the alternative medicine practitioners: Rebecca Kennedy, family medicine physician and lead of the long COVID clinic at a large health system :(
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Dr Kennedy is a member of (EDIT -previously typed COFFI which was wrong) Oslo Chronic Fatigue Network , on the board of an organisation called Association for the Treatment of Neuroplastic Symptoms, and will be a presenter at its conference later this year, along with…… Phil Parker.

https://www.symptomatic.me/2025conference#!event-register/2025/9/28/2025-atns-conference

IMG_0257.jpeg
 
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SNT Gatchaman said:
A response from the alternative medicine practitioners: Rebecca Kennedy, family medicine physician and lead of the long COVID clinic at a large health system :(



That first sentence with the giveaway "CFS/ME".



We've commented previously about the need for research into the psychology of medical practitioners when they are disempowered, credulous and vulnerable to pseudoscience: eg Modern Neuroscience™.



Again with the "not mainstream" when it's been standard operating procedure for over 3 decades. Then taking credit when patients recover, likely spontaneously. And given the understanding of the new science and narrative-changing, why haven't all your patients recovered fully?



I agree with this - we absolutely should try and understand why so many people do recover in the early stages. Sadly I'm not confident we're interested in the same things to study though.



This all sounds like something written by a certain 1950s pulp sci-fi author: "Love and Compassion - The Modern Science of Chronic Illness"
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OK I've looked this lady up and herself, and Schubiner and CLarke ( Amazon.co.uk: David D. Clarke: books, biography, latest update ) all lead back to the same / similar workplaces (Kennedy has her own business Resilience Healthcare now by the looks), and the following organisation: About | Explore Our Mission

which seems to be one that has perhaps changed its name a few times, from American Psychophyiosologic Association to now Association for the Treatment of Neuroplastic Symptoms but also has Endchronicpain.org noted against it too.
 
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These are revolutionary new ideas
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:rofl: new?? might be new to you but they've been rammed down our throats for years! new ideas, what tosh.

and like any paradigm shift in thinking, it takes years to get into the mainstream
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oh the irony :(

But by understanding the new science and changing the narrative, I have helped many people with long COVID and CFS/ME to restore their health and recover fully.
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You mean you were present in their lives while they recovered. Not the same thing.
 
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