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

Nath has been before hasn’t he. If I were him I would be insisting Wallit came along to deal with the flak W has generated rather than covering for him myself.

I hope they have been having words in Naths ear as well. “your choice of sidekick - big mistake mate. Making you look like a numpty”
 
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NelliePledge said:
Nath has been before hasn’t he. If I were him I would be insisting Wallit came along to deal with the flak W has generated rather than covering for him myself.

I hope they have been having words in Naths ear as well. “your choice of sidekick - big mistake mate. Making you look like a numpty”
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The only time I attended Nath & Vicky Whittemore were both there --- mingling after their talks.
Vicky highlighted that:
  • a rare disease she was responsible for had just had a breakthrough - causative gene identified and thus drug development could begin; and
  • the underlying cause of ME/CFS hadn't been identified --- thus drug development couldn't begin.
DecodeME may just be that breakthrough and/or rare variant genetic study ---.
 
I can't do much with this topic atm, but parking this here for any future continuation or usefulness for others:

From Jeannette Burmeister's blog series on the NIH's intramural study on ME, The NIH Intramural ME Study: “Lies, Damn Lies, and Statistics” (Part 1) | Thoughts About M.E. (thoughtsaboutme.com), reply detail from the Nature Portfolio peer review file (link):

"The results presented come from an analysis at the whole brain level which is a common method in fMRI. There was no a-priori area selected, as this analysis was performed to explore what happened in the brain that led to the failure in performance." (regarding TPJ portion)

"The approach selected with GEE was necessary to determine the primary objective of our study, the existence of EffRT performance difference between the PI-ME/CFS and HV 244 groups." (Effort preference/EffRT portion)
 
NelliePledge said:
I hope they have been having words in Naths ear as well. “your choice of sidekick - big mistake mate. Making you look like a numpty”
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The impression I got so far is that Nath is sort of "stuck" and in over his head, and that even if he would wish to distance himself from Walitt and this effort preference angle, he can't really without damaging his career at NIH, because his boss and NIH bigwig Koroshetz wishes to park this in the NINDS-facilitated NCCIH interoception project as well. Nath got asked to the position by the then NIH director Collins and NINDS director Koroshetz, which I imagine would have been a very big deal to him; then he came to rely heavily on Walitt (who had been treating ME/CFS as an interoceptive disorder since at least 2010 and who brought in a bunch of his NCCIH colleagues in the study and followed his own methods and views), then in 2019 Walitt was acting director of the NCCIH's intramural programme and fellow director of the new NIH pain center (another NCCIH initiative), the same year the Koroshetz-supported NCCIH/NINDS interoception programme got kicked off. In 2021 Walitt got rewarded with the directorship of the new Interoceptive Disorders Unit at the NINDS. (And as I list here, it appears likely that others within the Trans-NIH ME/CFS Working Group might wish this direction as well.)

On paper Nath is Walitt's superior in the study, but between him and Koroshetz (and possibly Collins who is collaborating with several organisers of the NCCIH interoception project) I wouldn't be surprised if he is mostly trying to keep his head above water and not look like he fucked up. (At least, if he doesn't actually agree with ME/CFS as an interoceptive disorder that is.)
 
Notes of possible puzzle pieces (in case I want to pick this up later):

  • Koroshetz' NINDS (which also staffs Nath and Walitt) is listed as a collaborative partner of COFFI on their web page. Link

  • NCCIH currently initiates NIH collaborative funding seminars for a "Whole Person Research and coordination center."
Link announcement
Link RFA​

  • The aim for the NCCIH for this project, as stated by their director Langevin in 2022 at their "whole person health stakeholder meeting", is that "whole person health could be a unifying concept for the complementary and integrative health field. NCCIH defines whole person health as empowering individuals, families, communities, and populations to improve their health in multiple, interconnected domains: biological, behavioral, social, and environmental." Link PDF meeting.

  • Foreign institutions can receive grants from the NCCIH. One of two special requirements that will be assesed in the review of the application is:
"Whether the proposed project has specific relevance to the mission and objectives of NCCIH and has the potential for significantly advancing the health sciences in the United States." Link​


(Again, these are just loose notes. Could be nothing, could be important.)
 
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Arvo said:
Notes of possible puzzle pieces (in case I want to pick this up later):

  • Koroshetz' NINDS (which also staffs Nath and Walitt) is listed as a collaborative partner of COFFI on their web page. Link

  • NCCIH currently initiates NIH collaborative funding seminars for a "Whole Person Research and coordination center."
Link announcement
Link RFA​

  • The aim for the NCCIH for this project, as stated by their director Langevin in 2022 at their "whole person health stakeholder meeting", is that "whole person health could be a unifying concept for the complementary and integrative health field. NCCIH defines whole person health as empowering individuals, families, communities, and populations to improve their health in multiple, interconnected domains: biological, behavioral, social, and environmental." Link PDF meeting.

  • Foreign institutions can receive grants from the NCCIH. One of two special requirements that will be assesed in the review of the application is:
"Whether the proposed project has specific relevance to the mission and objectives of NCCIH and has the potential for significantly advancing the health sciences in the United States." Link​


(Again, these are just loose notes. Could be nothing, could be important.)
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Oh well spotted @Arvo
 
I'm posting this comment here as well, so others who are interested in this topic are aware of it.

The redefinition of interoception by Langevin, Chen, Greene-Schloesser & co is picked up and used to "study" fibromyalgia as an interoceptive disorder:
Arvo said:
The study is ridiculous, but I don't find it funny; given the context it's disturbing.
This is a direct continuation of the activities of Walitt & his colleagues at the NIH.

Short recap: the NIH's division for alternative medicine/complimentary health (acupuncture, yoga, meditation, mindfulness), NCCIH, has recently started up a project that has the goal to produce research that can be used to underpin the promotion of these complementary/alternative methods as treatments within medicine. Walitt has worked there and has for years promoted the idea that fibromyalgia and ME were "interoceptive disorders", a matter of mistaken sensations. The NCCIH-initiated project team has rewritten the definition of interoception, and fabricated it as "bi-directional", so that found "interoceptive" issues can then be argued to be targeted with alternative practises (their "product").
They have no proof for this mechanism, they have only recently set out to produce that.

An yet, here we are:

Swidrak et al said:
Interoception is a key component of a bidirectional body-brain system for the predictive and adaptive control of physiological state, but the role of its subcomponents in chronic pain is still inconclusive (Bonaz et al., 2021). Recently, Todd et al. (2024) identified a subgroup who demonstrated very strong evidence of being more interoceptive, and concurrently had lower FM symptom impact (although the effect size was small). Conversely, self-reported interoception was positively correlated with FMS symptom severity and impact.​

Bonaz et al is directly realted to the NIH and the NCCIH interoception project. It was published in the same special edition of the journal Trends in neurosciencies (on "the neuroscience of interoception") that held Chen et al.'s interoception redefinition as opening article.

Bonaz et al's last author is Hugo Critchley; he was one of the two keynote speakers at the first NCCIH-initiated Blueprint for interoception initiative meeting in 2019; Critchley co-authored a study paper on "Fibromyalgia and ME/CFS: an interoceptive predictive coding model of pain and fatigue expression." It's third author works at Koroshetz' NINDS on pain (headaches/migraines apparently).

I can't read the whole "acknowledgements" section, but in part it reads: "We would like to thank all participants of the NIH Blueprint for Neuroscience Research workshop on ‘The Science of Interoception and Its Roles in Nervous System Disorders’, NIH Blueprint Workshop, 16–17 April 2019, Bethesda MD, with a special thanks to Dr Wen Chen from the National Center for Complementary and Integrative Health (NCCIH)."

Bonaz et al opens with:

"Interoception, the sense of the body’s internal physiological state, underpins homeostatic reflexes, motivational states, and sensations contributing to emotional experiences. The continuous nature of interoceptive processing, coupled to behavior, is implicated in the neurobiological construction of the sense of self. Aberrant integration and control of interoceptive signals, originating in the brain and/or the periphery, can perturb the whole system."​

Their article uses the same bi-directional definition of interoception, and says that "interoceptive mechanisms appear central to somatic disorders of brain–body interactions". I've left the hyperlink from the paper in, because yup, that links to an article by Judith Rosmalen on "functional somatic disorders", syndromes of related complaints with no known underlying organic pathology, which names chronic fatigue syndrome as first of the "big three" that are parked under it. (The other two are fibromyalgia and IBS.)


Todd et al also uses Chen et al.'s interoception redefinition.

"[Interoception] is a process by which the nervous system detects, interprets, integrates, and regulates information from the internal body (Chen et al., 2021)." Note, again, that interpreting, integrating and regulating were added according to NCCIH director Langevin & co's personal preferences.

The NCCIH-initiated, product-driven project opens the door to wide-scale further muddying of the science of these conditions. (As the NCCIH also seems to rely heavily on psychosomatic narratives for their recent new direction, they will no doubt be enthousiastically joined by the psychosomatic movement, which has similar aims to infiltrate medicine and reshape it according to its ideology.)

It appears that it will be done by the following steps*:

1) reduce an illness to "how it feels" and "perceptions", sensations of pain, sensations of fatigue
2) redefine interoception so it magically also includes that the nervous system "interprets, integrates and regulates information from the internal body" and add a "descending body regulation component" - claim that the process of interoception is "bi-directional".
3) produce studies that focus on physical sensations which "find" that this is a key thing in condition A, B or C
4) based on the claimed bi-directionality of having sensations: propose "interventions" out of their stable, labelled as "mind-body therapies", to treat the condition - meditation, mindfulness, massage, yoga, CBT, etc..

(*I expect produced evidence for the new interoceptive definition will be inserted as it becomes available)

It's basically Walitt's original "interoception" bull further refined and applied on a large scale by the health agency of the US government.
(And the NIH's ME project is closely involved.)

So yeah, this study is ridiculous, and does not pass scrutiny, but with its narrative, use of the NIH's interoception redefinition and focus on "body experiences" it clicks right in place on this NIH project. It's the further spreading of an unsubstantiated but ideologically/financially desired narrative, and referral fodder in getting that narrative established for NCCIH purposes (getting alternative practises integrated into medicine as treatments). I find the fact that this is picked up without an iota of substantiation, just wishful theorizing, both telling and worrying.
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I really think there should be people chronicling and reporting on this overarcing issue (instead of just discussing small portions on it like individual studies without their place in the larger context). Because if this gets to continue undetected it can and will do a lot of damage. It will muddy up medical science for industry benefits - to the detriment of the lives of the patients whose conditions are used, and of understanding their conditions. It could also create a redirection of funds from proper medical research to the "interoception" field if they appear to have validated their ideology with a mass of publications, which again would further hamper good understanding of these illnesses.

The NIH is throwing money at this stuff to get the desired narrative substantiated. Like I said earlier, this is additionally problematic because:
Arvo said:
I also find it a bad situation that the NCCIH sits at the hub for NIH’s interoception research: even if you are a researcher without New Age or psychosomatic beliefs about health and illness who is interested in interoception (the unredefined kind), the NCCIH-led Blueprint initiative is the place you need to get funding and the program that organizes your research meetings, where you will get their views fed and your research will be used for their aims.
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Also note again that
Arvo said:
Foreign institutions can receive grants from the NCCIH. One of two special requirements that will be assesed in the review of the application is:
"Whether the proposed project has specific relevance to the mission and objectives of NCCIH and has the potential for significantly advancing the health sciences in the United States.
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I'm currently not following this topic at all, and I can't work on this. I'm too ill and I have another important research project, which already takes too much from me in its writing. I'm also not based in the US, so I can't for example make FOI requests.

@dave30th and @Janna Moen PhD , I hope you don't mind me tagging you again. I'm doing it not because I expect you to pick this up directly (unless you want to), but as Americans interested in this topic you might have people in your network that are interested in keeping an eye on this. I think it is important that medical researchers, particularly those working in the field of ME and other PAIS/IACCs, are aware of the things I wrote about in this thread (so they know the context of papers they encounter) and I think this topic needs a good dig, preferably by an investigative journalist, so you are logical candidates to know people who might want to look into it more. (If you can't or don't want to keep an eye out for interested parties, I understand, but I wanted to have asked.)


I'm sorry everyone if I sound like a broken record, but as you may have noticed, I think it is really important to shine a bright light on the interoception project at the NIH and to get to the bottom of it, especially regarding ME.


ps, edited to add: @dave30th , I just now see I have tagged you earlier in March in a similar way. Please then see this as a kind reminder in case you're interested, I don't want you to feel pressured.
 
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Arvo said:
I'm sorry everyone if I sound like a broken record, but as you may have noticed, I think it is really important to shine a bright light on the interoception project at the NIH and to get to the bottom of it, especially regarding ME.
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I too am not in the US and am struggling to follow the relevant research, but it is worrying that the NIH or at least some of its researchers are pushing the concept of ‘interoception’ as part of what seems to be an ideological agenda.
 
Peter Trewhitt said:
I too am not in the US and am struggling to follow the relevant research, but it is worrying that the NIH or at least some of its researchers are pushing the concept of ‘interoception’ as part of what seems to be an ideological agenda.
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Indeed. The impression I got is almost like there are two currents running within the NIH: a group that's trying to pull this shit, and one that is trying to get good ME research on the road. (That weird mix also appeared in the not-so-deep-phenotyping paper by Walitt et al.) Maybe it's an intramural group and NIH individuals working extramurally, but I can't say for sure.


I posted about it in april here.
 
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