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

I'd have been tempted to bill him too, to let him show the audience what he is. After all, if he destroys his credibility himself, pwME won't be accused of abusive tactics. Again.

 

IiME have in the past invited people they do not necessarily agree with. That was one of the things that impressed me about the meetings.

 

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)

 

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.)

 

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:

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:

Also note again that

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.

 

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.

 

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.