Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

RaviHVJ

RaviHVJ

Senior Member (Voting Rights)
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A couple of things that struck me:

'There are ways to differentiate a pathological condition, such as cancer or heart disease, from a condition driven by a hypervigilant nervous system.

“If the pattern of symptoms does not follow some sort of structural damage in the body — if pain, tingling, numbness, or sensations don’t follow known physiologic pathways of the nerves, if symptoms jump around, or they’re worse sometimes and better other times in a way that doesn’t make sense physiologically — that’s a piece of evidence,” Kennedy says.

A wide range of symptoms in different areas and systems of the body is another clue.'

I've seen this argument made quite a few times - that a disease seemingly made up of lots of non-specific symptoms that traverse different organs and bodily symptoms must therefore be psychosomatic. A major issue with this is that what Kennedy says above could be applied to a whole host of other diseases. Multiple sclerosis, chron's disease, some cancers often involve a very wide range of symptoms in different areas and systems of the body. Also these diseases are often episodic in nature, the symptoms varying significantly day to day. Indeed, I'm fairly sure that there are HIV and cancer cases that fit the criteria for some of the looser definitions of CFS. The reason we differentiate those diseases from ME/CFS and Long Covid is that there is a known pathology - not because of the nature of the symptoms.

Even concrete pathological findings may not offer a consistent explanation for long-COVID symptoms. Many studies have reported abnormal findings in people with long COVID, such as viral remnants, high levels of blood clot–related proteins, microbiome alterations, low cortisol, immune-cell irregularities, reactivated viruses, or dysfunctional mitochondria.

Yet correlation does not necessarily mean causation, Schubiner says. The nervous system is intricately connected to the endocrine and immune systems and has two-way communications.

“When you find these endocrine and immunologic abnormalities, you could presume that they’re the cause of someone’s illness, but it might be that they’re the result of their illness,” he explains. They may be occurring downstream of the root cause, which could be the brain’s alarm system stuck in threat-response mode.

“We need to be doing a better job at going beyond the either-or narrative of mind versus body to a both-and explanation — one that allows for many different pathways to healing.”

Throughout the article, the nervous system is given an extraordinary degree of agency. She suggests that almost every single pathological finding in non-organ damage or autoimmunity Long Covid can be a downstream effect of nervous system dysregulation, which seems to be far more a statement of faith than science. And then she ends the piece by making an appeal to moving beyond dualism. However, her article is utterly steeped in dualism - it is fundamentally uninterested in a biomedical perspective as all biological abnormalities are ultimately the product of the relationship between the nervous system and other systems.

And though at several points, she notes that mind-body approaches aren't a cure all, she subtly undercuts that through suggesting that a) the nervous system is at the root of these illnesses, b) quoting physicians who hint that most patients have been almost cured through these mechanisms, and c) suggesting that the main barrier to these techniques working is the belief that Long Covid is an organic disease.

She is careful to caveat her claims - but the image that emerges is very much of Long Covid as solely driven by the nervous system and curable by mind body techniques if patients believe in them. It's a totalising explanation of a highly diverse set of illnesses - she's talking about Long Covid, not ME - that leaves no room for alternative explanations.
 
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Also I think relying on quotes from doctors who treat patients with mind-body techniques in lieu of actual scientific evidence is quite problematic.

Over the course of the illness, I've interacted with very few doctors who aren't utterly convinced that their treatments largely cure patients - whether the treatment in question is HELP apheresis, HBOT, triple anti-coagulation therapy, functional medicine, or anti-virals.

Doctors tend to believe that what they're offering patients will really help those patients, and they'll find data points that corroborate their beliefs. When I got HBOT from a doctor who said that the treatment "improved 70% by 70%, improved 20% by 90%, and 10% didn't improve," there were lots of postcards on the wall from Long Covid patients who had been "cured."

There are a couple of appeals to recovery stories as well in the article, and again, this seems like a way of sidestepping any kind of scientific rigor or scrutiny. Just as you can find a doctor who says they've cured most of their patients with mind-body techniques, if you exist in a mind-body echo chamber, you're constantly going to hear about mind-body recovery stories and ignore any other data point.

So a lot of the article seems rooted in sources which allow her to impose her own views upon the illness without having to defer annoying things like data or control groups.
 
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RaviHVJ said:
A journalist quite enamored with the mystical healing properties of mind-body techniques published this article last month:

https://experiencelife.lifetime.life/article/can-brain-retraining-help-me-recover-from-long-covid/
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Not sure this is a journalist, anyway this is based on her own certainty that this is why she recovered. More like one of the enthusiasts who got better naturally and decided that they held the answer. I saw her promoting this on Xitter some days ago and tagging basically the legion of biopsychosocial doom on it (Sharpe, Garner, that Grin PT jerk, Nathalie Shure (who pushed the LC = FND thing hard)).

I think it has to do with life. Or something like it. Life life life.
 
rvallee said:
Not sure this is a journalist, anyway this is based on her own certainty that this is why she recovered. More like one of the enthusiasts who got better naturally and decided that they held the answer. I saw her promoting this on Xitter some days ago and tagging basically the legion of biopsychosocial doom on it (Sharpe, Garner, that Grin PT jerk, Nathalie Shure (who pushed the LC = FND thing hard)).

I think it has to do with life. Or something like it. Life life life.
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I'm not sure she's even had Long Covid. If she has, what I'm about to say will be unfair, but there are quite a few woo-woo journalists for whom Long Covid is this ideal blank canvas on which to project their views about health and the human body. They'd be quickly dismissed if they applied these ideas to a well-researched field, but there's been sufficiently little biomedical research in the post-viral arena that these figures feel they can talk about something like the lightning process without mentioning any of the well-founded critiques of it. Or they can write something like this;

In a study published in Cell in 2021, researchers added a chemical to the drinking water of mice that triggered a bout of colitis. They marked the neurons in the brains of the mice that became active when their intestinal inflammation peaked. Several weeks later, the researchers reactivated the neurons — which prompted a similar inflammatory response in the colon.

The idea that the brain can spark symptoms without a pathological cause is not new. In 1885, researchers stimulated symptoms in a woman with a pollen allergy by exposing her to an artificial flower she believed real.

Both of which have absolutely nothing to do with Long Covid, and have everything to do with this mystical mind-body relationship. Essentially - "look at these two cases where the brain has sparked symptoms, therefore the brain can spark symptoms, therefore it is reasonable for me to suggest that the brain is very likely sparking symptoms across this set of highly heterogenous illnesses." In the context of the piece, those two cases represent some of the most solid scientific evidence presented.
 
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rvallee said:
Not sure this is a journalist, anyway this is based on her own certainty that this is why she recovered. More like one of the enthusiasts who got better naturally and decided that they held the answer. I saw her promoting this on Xitter some days ago and tagging basically the legion of biopsychosocial doom on it (Sharpe, Garner, that Grin PT jerk, Nathalie Shure (who pushed the LC = FND thing hard)).

I think it has to do with life. Or something like it. Life life life.
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And this is the other thing about recovery stories. I've said this elsewhere, but when you tally the number of ME/CFS, post-viral fatigue, Long Covid, and POTS cases across the English speaking world, you're probably talking about something in excess of 10 million. And we know that a substantial proportion of people recover within the first 2-3 years, almost certainly a greater proportion if you're talking about post-viral fatigue. Figures like her will tell you about the large number of mind-body recovery stories they've heard, but those stories represent a tiny fraction of LC/ME/post-viral fatigue recovery stories writ large simply because there are so many cases.

Also recovery is complex. Sick people try a lot of treatments, often at the same time. I am willing to believe there are cases where mind-body techniques have made a real difference - we're talking about a highly heterogenous set of illnesses and a huge number of cases. But there are probably far more cases where the stories are far more complex - where mind-body techniques may have helped, but the patient was also pacing, had reduced the number of hours they were working for, were already on an improving trajectory, had only been ill 3 months etc. But because mind-body techniques scream the loudest about recovery and give patients a sense of agency over their body after a period where they've radically lost agency, those techniques end up at the centre of these far more complex recovery stories. And then journalists like Mo Perry lap them up, applying none of the skepticism they apply to those who are chronically ill to the recovery stories that tally with their pre-ordained beliefs about these illnesses.

Sorry I've written so much - tearing into articles was one of the things I enjoyed most as an undergrad, and this is a particularly easy piece to pick apart.
 
RaviHVJ said:
Sorry I've written so much - tearing into articles was one of the things I enjoyed most as an undergrad, and this is a particularly easy piece to pick apart.
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Don’t apologise, we need the arguments ready to defend those that do not have the skills/knowledge to objective analyse such articles. I expect well meaning friends and relatives, as we type, will be sharing this article with people with Long Covid thinking it is good news and the means to total recovery for all.

I must admit people have stop forwarding such articles to me as I usually give them a full referenced strongly worded response.
 
Peter Trewhitt said:
Don’t apologise, we need the arguments ready to defend those that do not have the skills/knowledge to objective analyse such articles. I expect well meaning friends and relatives, as we type, will be sharing this article with people with Long Covid thinking it is good news and the means to total recovery for all.

I must admit people have stop forwarding such articles to me as I usually give them a full referenced strongly worded response.
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The article’s one saving grace is that it’s published in ‘Experience Life,’ which no one’s heard of or takes seriously.
 
It really does feel like a cult/pyramid scheme in some ways.

They are saying to recover you need to do more and stop thinking about your symptoms? Everyone who recovers will do more, since they aren’t functionally limited anymore, and anyone who recovered won’t think about the symptoms anymore because they are gone. The whole thing is an elementary confliction of causation and correlation.
 
Yann04 said:
It really does feel like a cult/pyramid scheme in some ways.

They are saying to recover you need to do more and stop thinking about your symptoms? Everyone who recovers will do more, since they aren’t functionally limited anymore, and anyone who recovered won’t think about the symptoms anymore because they are gone. The whole thing is an elementary confliction of causation and correlation.
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There's also something quite cultish about the insinuation, which is rather strong in this piece, that support groups play a fundamental role in keeping people ill, meaning that to recover patients need to shut themselves off from these spaces, which we know are such an important support. The article suggests that patients need to believe in a totalising way that their disease is driven not by pathology but by the dysregulation of the nervous system, and that the failure to believe this is a significant barrier to recovery - a claim that seems all the more outrageous when you realise just how little rigorous evidence relevant to Long Covid is proferred in the article.
 
That insinuation I believe was actually operationalised in the PACE manual that dictated practice in the CFS/ME clinics.

even in 2016,when knowing no details about PACE etc I attended the CFS/ME clinic, the Physio who led the sessions response to me taking in an AFME booklet and mentioning the charities during the group session because there had been no mention of them as a resource was

ah AFME they are a bit more sensible than the other groups
 
Peter Trewhitt said:
Like others in this field the author has created a totally unfalsifiable confection of ideas. This is not science.
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I've been thinking about this further, and the only way these ideas can be falsified or clarified is through the one thing the mind-body figures are silently opposed to - large-scale, consistent funding for biomedical research. So if you take the idea that the various pathological abnormalities that have been found in Long Covid patients - findings she acknowledges - are all ultimately downstream effects of a dysregulated nervous system. To approach that question with any kind of rigour, you'd need a lot of research digging into those abnormalities. If after 20-30 years of well-funded and high quality (meaning stuff like well-defined phenotypes) research, you had lots of abnormalities, but no sense of an overarching mechanism or mechanisms, then the case for a dysregulated nervous system driving things would be much stronger. Alternatively, if a mind-body figure was truly interested in moving beyond dualism, they may suggest an alternative picture - that perhaps there are indeed pathological abnormalities that drive subsets of Long Covid, with different mechanisms driving different subsets, but some of those processes may well be in dialogue with the nervous system - not in a simplistically causative manner, but in a manner that would mean that, say, a combination of anti-inflammatory, anti-viral medications and meditation may help. That's not my position, but imo that's what an intellectually coherent anti-dualist standpoint would look like.

Instead, the people who talk about moving beyond dualism end up being utterly dualist.
 
RaviHVJ said:
So a lot of the article seems rooted in sources which allow her to impose her own views upon the illness without having to defer annoying things like data or control groups.
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Robust methodology is a hard master.
RaviHVJ said:
Instead, the people who talk about moving beyond dualism end up being utterly dualist.
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Monomaniacal in their proselytising, even. They are using the anti-dualism argument to assert a claim that it is all done by the brain.
 
Sean said:
Robust methodology is a hard master.
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Honestly, if these are the standards, I could definitely write far more convincing articles arguing that viral persistence or microclots are at the root of all Long Covid and targetting those mechanisms is how all Long Covid could ultimately be cured. And those articles would be rooted in far more robust evidence than this one - not just interviews with doctors invested in these methods, but papers on microclots, viral persistence, and HELP apheresis. I could almost certainly source quite a few recovery stories, and it's important to remember that mind-body techniques are incredibly accessible, cheap, and well-marketed. More post-viral patients have probably tried those techniques than any specific drug, so there are likely to be more recovery stories around mind-body techniques (the more you dig into the current emphasis among BPS/mind-body people on recovery stories, the more ridiculous you realise it is). Of course the articles I'd write would be wrong lol - but that's the point. If you brute force an ideology or mechanism onto an illness, you're going to be wrong.
 
RaviHVJ said:
Also recovery is complex. Sick people try a lot of treatments, often at the same time. I am willing to believe there are cases where mind-body techniques have made a real difference - we're talking about a highly heterogenous set of illnesses and a huge number of cases.
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In the first year, up to the 2nd, of Long Covid, patient forums were filled with people detailing their supplement stacks and regimens and whatnot, attributing their recovery to this or that combination of supplements plus this change of diet plus some change in mindset or lifestyle plus plus plus.

Over time those have diminished. First gone were the supplement stacks. Then some of the dietary stuff and lifestyle choices. The only thing that's left is the mindset stuff. There are almost no posts anymore on the LC subreddit on the used-to-be-popular theme of "this is what I did to recover". The only ones that keep popping off from time to time is the mind-body stuff, with an occasional diet. And they are usually from the same framing as Miranda Hart's book: "not saying this will cure ME/LC, but this has cured my ME/LC and it could cure yours!".

Basically the stuff that can be reasonably eliminated has been eliminated. All that's left is the same mind-body woo peddled by quacks and ideologues. Because it's completely unfalsifiable magical stuff. But so many people before that have attributed their recovery to dozens and dozens of things for exactly the same reasons. And of course the whole mind woo thing is built with evangelization as a task for the converted. Those who feel they recovered by it must spread the good news to the masses, so they do speak loud about it, they're told it's crucial for its success.

The fact that recovery is the norm early on should have put a complete stop to this nonsense. But instead it has been used to actually amplify it, something that should never happen with real professionals. Because none of this is reasonable. People won't use reason to get out of a position they did not reason themselves into.
NelliePledge said:
If it looks like a duck :whistle:
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It's not a pyramid scheme. It's a reverse funnel! Also the water is cold, it's not like that normally!
 
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