Wired Magazine: The Painful Truth About Long Covid

[neurophusion]

@Learningandlistening. Perhaps the reason members of this forum thought you abandoned the debate is because you stopped posting here and announced on Twitter, "I'll be stepping away from this specific topic on social media for the next few months."?

"In THIS community, on the other hand, the non-negotiable truth is that "BPS" — whatever that means — is bad and false, and it is impossible that anything involving the 'mind' is involved in sustaining the symptoms of ME/CFS.

Contrary to what seems to be a common caricature, the presence of ME/CFS symptoms do not suddenly make people inherently close-minded about the potential of mind-body approaches, this doubt develops after humiliating reality checks delivered by the nature of this illness.

The negative stance towards the biopsychosocial model applied to ME/CFS is not a "non-negotiable truth", it is a working conclusion drawn from spending many hours assessing the evidence through the lens of critical thinking and rational skepticism. This conclusion can change when convincing evidence is presented, and it is concerning that we are expected to significantly lower the standards because you think "mind-body therapies are quite difficult to trial". There is no reason why brain retraining cannot be subject to clinical trials.

As far as I can tell, this forum consists of people who largely engage in equal opportunity skepticism: low quality biological research gets grilled here like everything else.

All the CBT/GET proponents had to do to be more convincing about their approach to ME/CFS is to employ a stringent diagnostic criteria and show clinically useful improvements on objective outcome measures. Yet they failed to do so after three decades, therefore we will continue to dispute their claims.

Furthermore, the underlying rationale of brain retraining can be tested using biological measures as objective proxies for the processes that are supposedly mediating subjective symptoms.

Your WIRED article mentions discussions with mindbody proponent Vegard Bruun Wyller. Did he mention that in the early 2010s he was involved with research into the use of low dose clonidine to inhibit the sympathetic nervous system activation that was supposedly driving the sustained stress arousal feedback loop? While the drug worked to inhibit catecholamines, CFS patients became worse at the endpoint, not better, suggesting that the increased sympathetic nervous system activity (if actually present) is a compensatory mechanism.

'Sustained Arousal' Hypothesis Not Sustained: Wyller's Clonidine Trial for Chronic Fatigue Syndrome Fails - Health Rising

Specifically, we suggest that CFS is caused by sustained arousal. Wyller Brun Wyller’s drug/behavioral approach to chronic fatigue has been controversial in Norway. Embraced by many in the medical community there it’s emphasis on psychological factors has dismayed many in the ME/CFS community...

www.healthrising.org

It makes sense that an illness characterised by post-exertional malaise or exacerbation of symptoms after stressors (physical, cognitive, emotional) could benefit from managing such stressors or responses to it, but that is not the same as the illness being primarily perpetuated by internal psychological factors stuck in a feedback loop of the stress response.

 

[Learningandlistening]

Did you ever respond to David Tuller's blog post about your article?
Did you have the courage to address it on X?

I don't have X so I don't know beyond what I've seen people share elsewhere. But I saw you posted a petition to remove the WIRED article, which is not equivalent to engaging with critiques of your work.

Not the only thing I posted. So get back to me when you've actually engaged with my own posts and effort.

 

[Learningandlistening]

I joined this community 10 minutes ago. So I'll leave it to the established members to respond to that (the members that you are refusing to engage with in good faith, for all your big boy courage). But I'll say this, when you become disabled--as everyone does if they live long enough--I hope you don't have to know what it's like to be physically incapable of forming a connection to the outside world and rely on online communities because your mitochondria don't work.

Best of luck with your new book! Maybe Rogan will have you on again. I hope you carry the energy of "It's time for you to engage with mine, on my terms" with you to his studio this time.

I did my best to push back on everything Rogan has to offer. His nonsense. I'm not some opportunist. Go watch the interview instead of making assumptions about it. As I've said repeatedly, I have no time for people who make assumptions about my work and interactions. See you in a week or so!

 

[ScoutB]

What I want is for you, here, to engage with what I wrote about insular communities, unfalsifiable foundational truths, and the parallel to hEDS.

It is normal for a science community to generally agree that the thing all evidence points to being true is in fact true.

 

[Joni]

"I have a LIFE you know! I'm not chronically online to respond to you all. Pls seek help losers."
Also:
"This is the best you crips--I mean disabled people -- could do? Engage with the tangential points I just made late at night at once! Or else I'm huffing off again!"

 

[Joni]

Alan, no one is here to discuss your points about insular communities. many of us spent years or decades without any online communities, "illness narratives" (you know, because we HAD no narrative or even diagnosis) or illness identity, yet here we are, still sick.

you want engagement with your work, here's some.

Why didn't you state in the article that many ill PACE participants were reclassified as "recovered" at the start of the trial because of moving goalposts?

Why did you frame the criticism to PACE as a single person's objections--a person who you made of point of describing as patient funded? Why did you not examine the methodological failures in the study?

Why didn't you mention the myriad examples of people who got worse from brain retraining or GET?

 

[Jonathan Edwards]

In THIS community, on the other hand, the non-negotiable truth is that "BPS" — whatever that means — is bad and false, and it is impossible that anything involving the "mind" is involved in sustaining the symptoms of ME/CFS.

You have now made it clear, Alan, that you have not actually understood the situation in this community.

BPS is shorthand for a group of people who in the past have propounded a particular theory.
What historically is not in doubt is that these people have proved incompetent, most obviously in their dissemination of treatments that were inadequately tested. Moreover, their flagship trial, PACE, if nothing else, showed that their BPS theory was empirically wrong. The prediction was that a change in mental approach to illness would lead to an improvement in disability. There was some evidence. of a change of mental approach but there was no evidence for a corresponding improvement in disability.

And to conflate BPS with "mind" begs the question as to what "mind" is supposed to be. Just yesterday I was invited to submit an article to a special issue of a neuroscience journal on 'Rethinking the Brain, Conceptual Challenges in Neuroscience' in recognition of my previous work on mental representation. (You may not have been aware that my main academic interest is in the structure of what you call "mind".) You have suggested that somehow mind is something supernatural yet which can fit with neuroscience. It seems to me that you are a very long way away from understanding the basic metaphysical issues involved. This is no surprise to me having spent a year studying in the philosophy department at King's College London. Modern academic philosophy has failed totally to keep up with growth in human knowledge in terms of biology and physics in the twentieth century. (Remember that I am also a card-carrying philosopher. I was for ten years on the editorial team of Journal of Consciousness Studies.)

Members here object to bringing in psychological theory partly because, as has always been evident to me as a physician, it is almost entirely bullshit with no empirical foundation, and partly because most of them have tried to make use of 'mind over body' and found it to be a miserable failure.

The intellectual community here is way ahead of any academic department I have ever worked in - whether biomedical or philosophical. People here see a straw man a mile off, so there is no point in presenting us with one. You have not taken on board the basic knowledge required to address this problem usefully; people here have. I am afraid to say that my comment about humanities voyeurism seems to have been justified. And it does untold harm.

 

[Jonathan Edwards]

And there seems to be a salient asymmetry in the comparison with the hEDS issue. The hEDS community have difficulty in accepting that theories they adhere to may be bullshit. the community here can see bullshit a mile off and call it out.

What is the supposed similarity.

 

[Hoopoe]

Allow me to suggest to the lions in this den that perhaps you have more in common with the hEDS "zealots" than you might think.

You're trying to turn all this into a battle of beliefs, wanting your cherished belief to have the space you feel it deserves, but it's about evidence.

hEDS is a fad diagnosis and so are mind-body and BPS approaches.

You believe that you must convince others to overcome their dubious beliefs while yourself being immersed in merely a different set of dubious beliefs.