Brian Walitt and his role leading ME/CFS research at the USA NIH

Fantastic idea!

 

It sorta reminds me of how well prepared the LC people were when it came to getting government funding in the Netherlands. They even went a bit further, they had reached out to researchers and put in joint applications I think. So that it would reflect very poorly on ZonMw if they would go into a different direction. Of course they had the luxury of having learned what happened to Dutch ME-patients with the MELines-farce.

I'm just wondering if it would be feasible to start collaborating with scientists in such a fashion where it comes to funding for ME/CFS in different parts of the world.

 

To be clear about yesterday, I never meant to argue that we had a clear case of research misconduct. I am outraged that lying to and decieving patients to such an extreme degree is not considered misconduct.

If you can be detached and cool about this, great. But bps theories destroyed my life. I probably could have maintained a level of calm detachment before I was gaslit into this bed.

I do agree that pushing for much more funding is the most important thing. But if the Wesselys and Wallitts of this world keep sabotaging our attempts then we can't ignore them forever.

Plus, I would like to see some consequences for the people who destroy lives and slander us endlessly with seeming impunity. I don't know perhaps that makes me naive.

So I'm taking another break, and I'll be discussing new positive findings and similar things when I return because this stuff is too triggering for me to be objective about it.

P.S I was a postgradute student when I got sick, for the record.

 

This idea is fantastic, and I really hope you lot can make it happen!

 

Another informative thread on Wallit from Jeannette Burmeister:
https://twitter.com/user/status/1767634374516940923

 

How to disappear a disease ?

 

Doesn't take any prisoners, does she! Marvellous.

 

I need to catch up with this thread, but I can't atm.

In the last days I have collected some more stuff (I didn't plan to, but I kept falling down rabbit holes.)
I'm not able to put it all here (this is already taking a lot), but there are a couple of things that I think are very important to report.

Most importantly that Walitt has a background of calling ME/CFS an interoceptive disorder (by which he means a disorder of subjective perception) and of managing to get a unit for interoceptive disorders founded at the institute he works for, which is supposed to include ME/CFS, based on his views of fibromyalgia. (Bolding for noticability)
At the same time he also used fMRI to look at brain activity “as a surrogate measure for fibromyalgia symptoms” because fibro pain is "difficult to measure"; Walitt has been treating ME/CFS as an interoceptive disorder since at least 2010. (See details in PDF attachment.)

(To me it looks like he basically went: the pain sensation in fibro is difficult to measure, ME is about a "fatigue" sensation that is difficult to measure -while ignoring decades of observing metabolic issues and mitochondrial dysfunction etc.- , both have no "there" there, ergo, they must both be about a perception of something that is not there.)

It's also noteworthy that Walitt seems to have started at the NCCIH in 2013 not just as acting Clinical Director of NCCIH, but also as Director of Clinical Pain Research at the NCCIH (Fibromyalgia: Finding a new narrative | MDedge Family Medicine) before he moved on to his other positions of chief of their Clinical Investigation branch and (since 2019) Acting Clinical Director for their Intramural Research Program. It's also interesting to further track the NCCIH's shift to making reasearch into "interoception" a top research priority for them. One place is in in the archive of the NHICC minutes. Archive of NACCIH Minutes | NCCIH (nih.gov) I haven't done that really, but some interesting tidbits are:

• a workshop called, “The Science of Interoception and its Roles in Nervous System Disorders,” in April 2019 on the NIH campus. NCCIH is the workshop’s planning lead." Council Feb 2019 Minutes (nih.gov)

(Websites: The Science of Interoception and Its Roles in Nervous System Disorders | NCCIH (nih.gov) and The Science of Interoception and Its Roles in Nervous System Disorders (scgcorp.com) It must be noted that Walitt was not a speaker at this workshop. In fact, so far I have not come across a direct link between Walitt and the NCCIH's interoception activities, which is in itself noteworthy given his deep involvement with NCCIH and his own focus on it.​

• The September 2020 minutes which mentions newly adding "whole person research" and "Interoception science" to the list of high priority topics and new topics for the new Strategic Plan september-2020-council-minutes-508.pdf (nih.gov) Note that I was mistaken in an earlier post, interoception is part of the 2021 NCCIH Strategic Plan FY 2021-2025.
• In the May 2021 meeting, "research on whole person health" and "interoception research" are numbers 1 and 2 of the "top scientific priorities" described at the end of the strategic plan.DHHS NIH NCCIH National Advisory Council for Complementary and Integrative Health, Minutes of the Seventy-Seventh Meeting

 

Indeed. Nath has appointed and protected him. The question is why and if that initiative lay with him or if he was led there by someone else in the team.
At the time, SolveME reported: “Dr. Whittemore was very receptive to our strong opposition to Dr. Walitt’s participation in the study, but said that she has no role in the study design or staffing; that rests with Dr. Nath."

I was absolutely appaled by Nath's response to the concern on Walitt's appointment at an April 2016 webinar. (The Fallacy is strong with this one.)

It's like you make a big fanfare because you're going to write a report on women in the workplace, and then in a key position you appoint a guy as an "expert" who is known for his sexist and misogynist stereotyping of women - and in reponse to concern you say that progress just won't happen if people with such views were not invited in. (And your new appointee then happily invites Andrew Tate to give a talk to your team, which your colleague then frames as an "exchange of information and widely divergent ....opinions", like their bigotry is just another opinion that's "essential to moving any field forward". - Ugh, "We don't need to be openminded Brennan, you're holding a turd.")

Nath literally pulled out his past in AIDS research, claiming that if he had excluded people who were known for fanatically spreading misinformation on and stigmatization of AIDS and gay people from AIDS research, there wouldn't have been any advances. (So....he would have welcomed Casper Schmidt as lead associate investigator and lead author of his AIDS study? Somehow I have some trouble believing that.)

And then he warns patients to not be critical of his appointees, because otherwise researchers won't study their disease. Which I thought was downright abusive.

 

I like it.

I slightly think of the Bechdel test too where it looks in films at whether they actually contain a female character that fulfils certain criteria rather than being a flunky.

I wonder whether there is some inverted type of ‘score’ that could be given where papers get points for using unevidenced tropes, each inference made that isn’t supported and major points for when a claim in the abstract (tripled if it is paywalled) isn’t even consistent with the facts in results ie if a lie.

and call it something like the ‘troping-propaganda manifesto test’ (open to catchier suggestions for names )

 

Well this is all very disturbing. For sure Nath betrayed us. He made a choice equivalent to putting a coal executive in charge of a climate policy initiative. The example of an extreme misogynist in a women's initiative also works. Walitt's beliefs are pure bigotry, putting him in this position is violence against us, there is no other way to put this. So no wonder the program failed, it was sabotaged by the people who ran it.

Walitt's views are frankly delusional to the point of being demented, but I don't know what's worse here: 1) just how demented and absurdly out-of-touch-with-reality they are, 2) that he was put in a position to impose those beliefs and sabotage this program, 3) that 90%+ of MDs agree with his views, or that 4) there is not a single bit of evidence to support any of it, it's pure bigotry supported by logical fallacies.

This is a lot like leading people to get lost in deserts, putting up signs that mislead people into getting lost, in response to an epidemic of people getting lost in deserts. It's both active and passive infliction of harm, but at this point it's so well documented that it can't be excused on ignorance.

It's also obviously absurd that AIDS research and care would not have progressed if the efforts had not included AIDS deniers. It obviously did exclude those, what could they possibly have contributed anyway? In the end people do the job they are tasked to do according to how they are held accountable by their bosses. I'm sure that there were people who were mostly hostile to the idea of AIDS being a real thing caused by a virus, but they worked in an environment in which they were tasked to do something, one thing that was part of a larger whole, and they were held accountable if they deviated from it. That's the main difference here, for all the cheap lies and pretense, outside of those with a personal motivation to solve ME/CFS, hardly anyone given funding or a salary to work on it is actually working on solving it.

Instead we get overt sabotage like this, and Rosmalen getting millions in funds that explicitly excluded people like her and the work that she does. At least there's some possibility of pushing through this resistance with Long Covid, I don't know if I would have the strength to hold on otherwise, seeing just how hopeless the medical profession is making it for us. And because this is an ideology, a belief system, they actually think that they're doing what's best, and that means that the more they do it, the worst it is for us, the better it is. This late into science and technological progress, this is likely the worst aberration that experts have ever engaged in. It's like a space age civilization still doing ritual sacrifice, it's so absurd that the only natural reaction is to ignore and deny it entirely.

 

I don't know if you have seen this (see PDF attachment on this post), but just before opening his first unit for "interoceptive disorders" in 2010 (in which he included ME/CFS), Walitt got approval for a study using fMRI to look at the brain activity of fibromyalgia patients. (In the context of him viewing fibro as a dysfunction of subjective perception - I believe the study was still running when he opened the unit.)

Walitt et al.'s 2024 deep phenotyping ME/CFS paper also refers to a Knoop & Van der Meer paper* (Fatigue is associated with altered monitoring and preparation of physical effort in patients with chronic fatigue syndrome, 2018 Van der Schaaf et al, ref 35), who used fMRI to make basically the same claim as "effort preference", saying that "CFS patients showed an effort-dependent behavioural bias towards less effort investment,.." and that their fMRI findings linked "fatigue symptoms to alterations in behavioural choices on effort investment,...". (Only they linked their findings to another brain area, the dorsolateral prefrontal cortex, linking it to "beliefs")

The idea is that they can pin their theories of mistaken perception playing a key part in ME/CFS on specific brain areas, thereby biologically "proving" their bps theory, and providing an area for treatment (CBT for the dutch, prob. what Walitt's interoception unit and/or NCCIH want to offer -CBT or mindfulness-like stuff? - for the Americans)

 

Another puzzle piece:

A 2021 article by Chen et al, redefining the term "interoception". The article is rooted in the NCCIH.
Lead author Chen, chief of NCCIH's Basic and Mechanistic Research in Complementary and Integrative Health Branch, is leading the NIH Blueprint Interoception Working Group. The last author (often preserved for a supervisor) is NCCIH director Helen Langevin. (Walitt's boss there.). The second author is Dana Schloesser, from the NIH Office of Behavioral and Social Sciences Research, who was co-planner of the NIH workshop on "the science of interoception and its roles in nervous system disorders" (the NCCIH was its planning lead, link to info & booklet here), and who is, among other things, involved in "the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Group". Cui is from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) and also is involved in the the NIH Blueprint for Neuroscience Research and "She has been the team lead for a Blueprint team to develop and implement the Blueprint Science Initiative on understanding the dynamic neuroimmune interactions in the transition from normal CNS function to disorders."

Edited to add link: The Emerging Science of Interoception: Sensing, Integrating, Interpreting, and Regulating Signals within the Self - PubMed (nih.gov)

A reminder that Walitt is deeply connected with the NCCIH. (If not replaced he is currently still acting clinical director of the NCCIH's Division of Intramural Research under M. Catherine Bushnell, and acting chief of their Clinical Investigations Branch while Bushnell leads the Pain and Integrative Neuroscience Branch, which Walitt's former position was Director of Clinical Pain Research at the NCCIH.)

And NINDS director Walter Koroshetz is collaborating with NCCIH director Langevin on their interoception focus under the "Blueprint for Neuroscience Research" project. And in 2021 he allowed Walitt to establish his second unit for inetroceptive disorders as part of Clinical Neurosciences Program in NINDS’s Division of Intramural Research.


Edited 23-3 for strike-through, see posts further on, eg. posts #66 and #68. Walitt was the DIR director's right hand man at NCCIH's Division of Intramural Research, from 2013/2015 until early 2016, and again in a more formal position from 2019 until about late summer 2020. At NCCIH he had an interest in "interoceptive disorders" (like "chronic fatigue") and his view of ME/CFS as an interoceptive disorder has been ongoing since at least 2010.

It should be noted as well that Chen et al says: "The complex interplay between the ascending and descending pathways of the interoceptive system provides many potential routes and methods for targeted interventions in the case of interoceptive dysfunction and related disorders."

 

Btw, based on sources in my previous posts it is clear how recent the current vogue of researching "interoception" is, and how new and unsubstantiated this whole new NIH interoception focus is as well.

I think it's interesting to add that Wikipedia did not have a page in interoception before 2017/2018, and its "interoception" page development aligns with this same recent trend.

Spoiler: details on the development of the Wiki page for interoception

Before it was a page about "Sense" (mainly sight, smell, etc.) which had a small subsection on "internal sense, also known as interoception". Between February 2017 and July 2018, the page about "sense" gets changed to a page dedicated solely to "interoception", including the psychosomatic take on it, and a claim it plays a role in "somatic symptom disorders"(aka somatoform disorders aka hysteria). From this new page:

Sense - Wikipedia (archive.org)
Interoception - Wikipedia (archive.org)

I want to stress that I am not agains researching interoception in the classic sense - it's certainly an interesting topic. But I disprove of trying to hitch interoception to the bandwagon of the bps/psychosomatic movement, and the interests of people who want to push CBT, mindfullness and other complementary approaches as key interventions for serious and life-ruïning biomedical illness, with shoddy science and redefining the term so it fits their theories.

 

"In this revised description, interoception includes the processes by which an organism senses, interprets, integrates, and regulates signals from within itself."

Well, that isn't interception, matey. Regulation involves output. ~-ception is input. So you are likely to get yourselves confused - and you do:


"The CNS, especially the brain, is primarily responsible for interpreting and integrating these signals into a representation of the internal world."

No it isn't. There is no 'representation of the internal world'. There are vast numbers of different forms of representation in the brain all at once. None of them represents an 'inner world' as far as we know.

This shows so clearly the basic problem - that psychologists and neurological hangers on don't have any grasp of the structure of thought. It isn't the brain for a start.