Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

I do not get the impression that this part of the study is an honest, illness- and patientinput-driven look into ME; to me it looks an awful lot like an effort to (further) establish the acceptance of a desired "effort preference"/effort avoidance framework of ME. More tool than find.

Looking at some context, it also doesn't not reassure me that it's not. Walitt called ME a somatoform disorder (a psychiatric disorder where patient's symptoms have no physical basis, and where there is "often a degree of atention-seeking"; the replacement term for hysteria) and sees it through a behavioural lens.

As mentioned elsewhere, "[Walitt's] research protocols focus on deeply phenotyping persons with disorders characterized by aversive symptoms that develop after exposures, such as infection. Currently, he is working with patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gulf War Illness (GWI), and Post-Acute Sequelae of SARS-CoV-2 infection (PASC)."(Link)

Disability stemming from disease is not the same at all as "aversive symptoms that develop after exposures".
Like the psychiatrists before him, he is framing ME disability as a tendency to avoid activity, as something patients do instead of what happens to them.

Walitt is also the director of the Introceptive Disorders unit.
(I don't know since when, but gaining this new position might have happened during the ME/CFS study period, see the remark from Paddler, a participant: )

And since 2013 Walitt has (among other functions at the NIH) been the acting Clinical Director of NCCIH - National Center for Complementary and Integrative Health.
Here's the NIH's plan on interoception research: Interoception Research | NCCIH (nih.gov)

So far it's mostly a framework/model; this new presentation looks still quite novel and in its infancy substantiationwise, and the intention is to expand it. And this worries me, as this makes patients tools instead of the exit point. (Interoception will need to justify its existence, and they need to do that by proving that its framework is applicable and useful; firstly by showing how and that interoception plays a role in patients, and then secondly that this can be targeted with treatment -which they intend to pull from "complementary and integrative health approaches" like mindfullness, CBT and nutrition- in a way that is useful and cost-effective.)

Interoception is named as a "top scientific priority" of the NCCIH.

Spoiler: Some info from page

"Because of its potential importance, research on interoception in the context of complementary and integrative health approaches requires a deeper understanding of the connections between brain and body. In addition, tools and methods to probe interoceptive processes, especially in human subject research, are largely limited to self-reports and a handful of measures such as heart rate variability and skin conductance. An expansion of innovative and quantitative methods to study interoception may significantly enhance our understanding of how interoception works. These new tools and methods may also provide novel insights into how complementary and integrative health approaches may modulate the interoceptive processes and interoceptive clinical outcomes."

What Does Success Look Like?

• Expanded understanding of the mechanisms underlying interoception.
• Improved, innovative tools and methods to probe interoceptive processes, especially in human subjects.
• Increased understanding of the impact of specific complementary and integrative health approaches on interoceptive processes.
• Improved understanding of the efficacy and effectiveness of complementary and integrative health approaches on interoception-related clinical outcomes, especially those related to musculoskeletal and visceral pain.

Priorities

• Build on basic interoceptive pathway studies to investigate mechanisms important for complementary and integrative approaches.
• Expand mechanistic research on interoception involving pain, cardiovascular conditions, and digestive conditions.
• Develop translational and clinical efficacy studies supporting development of new tools to probe interoception in humans and animal models.
• Support natural product research related to interoception involving brain-gut interactions and brain-cardiovascular/immune and brain-endocrine pathways, including both neural and nonneural pathways.
• Support mind and body research involving brain-respiratory (meditation), brain-musculoskeletal (acupuncture/manual therapy, movement-based therapies), brain-cardiovascular, brain-endocrine, and vagal/spinal pathways.

I've nosed through the attached PDF of the NCCIH Strategic Plan FY 2021–2025 (which is from May 2021 and interestingly does not mention the word "interoception"once) and it indeed reads like European liaison psychiatry aims and bps ideology in a glossy wrapper. What I've seen looked very, very familiar to me.

Spoiler: some content of the NCCIH Strategic Plan 2021-2025

It's wrapped in unctuous words and peppered with the familiar buzz words, at first scan the basics are the same. The BPS movement aims to inegrate psychiatry with conventional medicine in order to be able to treat medical issues from a psychiatric angle (CBT); they claim that this way they are treating the "whole person", and are very loudly claiming they are working "evidence-based", based on their own wobbly studies. The NCCIH "has worked to advance the position that evidence-based complementary therapies should be “integrated” with and not used as an “alternative” to conventional medicine." And the subtitle of their plan is: "Mapping a Pathway to Research on Whole Person Health" (and the phrase "whole person" is lavishly peppered throughout the plan).

About those "complementary therapies" it says:

"Complementary and integrative health approaches include a broad range of practices and interventions that may have originated outside of conventional medicine and are gradually being integrated into mainstream health care. These approaches can be classified by their primary therapeutic input, which may be nutritional, psychological, and/or physical. Psychological and/or physical approaches encompass what have been commonly considered mind and body approaches. Commonly used psychological approaches include meditation and cognitive behavioral therapy, while physical approaches include acupuncture, other manual therapies (soft tissue manipulation, massage, spinal and joint manipulation, and related devices), and physical exercise. Some approaches, such as yoga and tai chi, comprise both psychological and physical components."

Now, going back to the NIH ME/CFS study, this says:

and it aligns nicely with the NCCIH aim of "the integration of complementary and conventional care" and its inetroception info:
"Processes involved in interoception could often serve as therapeutic targets of many complementary and integrative health approaches, including psychological and physical approaches such as meditation, acupuncture, and other manual therapies, as well as nutritional approaches such as natural products."

The way it is presented in the NCCIH plan makes it sound benign and helpful, but for me it sounds like it has a great risk, even intention, of pulling meditation, mindfulness, CBT etc into the place where actual medical treatment should be.


Edited to add: post #688 continues on this topic, adding more sources
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This post has been copied and following discussion moved to a new thread:
Brian Walitt and his role leading ME/CFS research at the USA NIH

 

(Sorry for the wall of text. I tried to make it shorter, but it became longer than I thought. Too brainfried to edit it shorter.)

 

Thanks for your enthusiastic approval. I want to emphasise that I do not mean it as a burn. I'm really gobsmacked by it.

 

I comment not on your intentions. Simply the ashes left behind by your analysis.

 

I know! Still found it important to emphasise.

 

$$$$$$$$$

 

So basically this is card carrying pseudoscience.

We have had this flagged before but I had forgotten it in the context of this study.

How on earth did Nath agree to get involved in this project?

More importantly how come Walter Koroshetz is prepared to sell it as ground-breaking research?

Yet again it becomes clear that the liaison psychiatry movement is not just incompetent. It is knee deep in alternative facts.

 

I think this gets to the heart of the issue. It's the prejudice everyone has, doctors and laymen.

"ME" is not an illness, it's something you choose to do. Even mental illnesses do not get this kind of treatment. Indeed, if ME was considered a mental illness, it would receive billions in funding and the disability would be documented and recognized.

ME is its own category, it is not a disability, it is not as illness, it's you choosing to do nothing. You can do anything you want, you just choose not to. This paper reflects that way of thinking, it hasn't changed even after all this time.

I don't know how we expect the NIH to play fair with us after publishing this. That we can pretend this is an OK paper and ask for more funding in the future. They will just keep denying funding and find any excuse imaginable to prevent the research from moving forward.
____________________

 

Excellent analysis an information, friend, I fully agree with you. We truly need to unmask this person and his intentions

 

Impressive that when you consider the big picture, however it's described, this is simply the merger of scientific and alternative medicine. And not the best of either, literally the worst of both. It's akin to the merger of science and religion, and somehow, in health and in health alone, it is considered good, whereas everywhere else it's understood to be bad.

In fact any effort like this in any other scientific discipline would be met with fury and mockery. It would lead to walk-outs, to actions to derail those efforts from their respective experts, technicians and workers. But in medicine? It's great, no it's amazing! Expand! Fund the hell out of it, in fact literally stop research efforts and replace them with this complete bullshit ASAP.

Medicine is quite literally the only scientific discipline that is openly regressing, and not just entirely as a choice, but out of sheer hubris. They're regressing exactly in the areas they understand the least and fare the worst, which need the most research to be brought up to line with the rest, and they choose instead... magic. This may be the most bizarre thing happening in the modern world. Plenty of bad things are happening, many worse things, but this is likely the most bizarre.

Especially as there is no other way to understand this project, it's explicitly and plainly framed as exactly what it is. It's as if they're taking the approach "if you can't beat them, join them", but in a way that explicitly and quite obviously is nothing but downsides. It's literally all cons and not a single pro. And every single level. It's not even cheaper, it's massively more expensive. And unethical, immoral even. It destroys the credibility of medicine and trust in all experts. It's like shooting your nose then choosing to just shoot your whole face with a canon because it's not spited enough.

And worse than that, it does extreme harm. In the only profession that not only features a slogan saying the opposite, it's technically written into law. This may frankly be the most bizarre behavior in all human history, accounting for the importance that involves anything medicine does. Even politics rarely gets this obviously insane, and it always involves some level of force or coercion. Here it's completely voluntary.

And, yeah, absolutely this is why this whole study has failed. Same as it ever was. It's as planned failure as failure can ever get planned.

 

It was a bit weird that Nath chose to speak to a biopsychosocial conference (last year?) on Long Covid featuring nothing but psychosomatic ideologues. It seemed out of place and possibly a way for him to speak to them about how science can actually solve this.

But looking back from this, it appears that he simply agrees with them, and was speaking to a crowd of like-minded people.

And looking at how things have unfolded with the Cochrane review, with Bastian apparently back in with the in-crowd there, it looks like the fix is just almost always in, at least when it comes to institutions. Just as we saw with the Netherlands funding being largely handed out to Rosmalen.

This stuff is just baked too deep in the fabric of medicine. There are simply not enough people like you who see through it.

 

There may be not force involved, but I think there is a trail of clues, pointing to the likelihood of incentives being involved, if we consider recent history of all involved in this area grant and status wise, huh?
If so maybe not so surprising.

 

NIH MECFS Information List <NIHMECFSInformationList@mail.nih.gov>


A new information page about the NIH Intramural ME/CFS study is now live on the NIH ME/CFS website. This includes a Q&A page featuring answers to commonly asked questions about the study.

 

Well I am not reassured by the answer to the “what is effort preference?” question, isn’t that pretty much what we thought they meant?

 

This section highlights how they think. ME/CFS is a diagnosis of exclusion and if some “real” disease is found in your body, you can’t also have ME/CFS. Some of the other diseases they used to exclude people from the study have nothing to do with our symptoms like childhood epilepsy etc.

 

moved post - this post responded to a comment about who bears responsibility for the EFFrT study

IMO it still all falls on Nath. He fumbled the opportunity given to him. He allowed that nonsense to be included. The buck could have stopped with him, and he (cowardly) let it pass.

 

FWIW, I met with the staff of my Senator today about my concerns of this study and how these taxpayer dollars are being spent.

The health legislative aid of the staff is reaching out to the NINDS Office of Science Policy and Planning contact now to address the concerns shared as a next step.

I’m sure NINDS & NIH will side-step, but had to try.

 

I did a quick dig to see if their measurement of metabolites in cerebrospinal fluid lined up with a previous study on the same topic. I bring bad news. The folllowing plot is just a rough draft of the final analysis but it shows big disagreement. Many things Baraniuk 2021 found high, NIH found low (in fact NIH found we were lower than healthy controls in all the metabolites that were also measured in Baraniuk). Perfect agreement would have the dots on an upward sloping line that ran through (1,1) (i've marked that in pink).


Instead most are below that and to the right, indicating NIH found them lower in patients while Baraniuk found them high.

It's hard to know what to think about this without a bit more context. Is the state of metabolomics just rubbish? Is one of these studies clearly wrong? Is this normal? I hope to do some other comparisons that will reveal a bit more!

 

The Kynurenine and Pro measurements are having a lot of pull on that trend line. Still without those two, the measurements don't line up particularly well. Interested to hear what others think about this and if this level of variability is typical.