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

Copied from 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 - edited) 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 the next post and post #18 continue on this topic, adding more sources

The two related S4ME threads are:

• Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al | Science for ME (s4me.info)
• Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al | Science for ME (s4me.info)

 

This is an addition to post #661.

I wish I could discuss it all in detail, but it's too much for me now. I'm just leaving some sources and info here, so others can use it.

Because of its length I put it behind a spoiler, but I think it's vital information to have for those interested in this study and in understanding where "effort preference" came from and the context of the responses of some researchers. As far as I can tell, there seems to be a concerted effort at NIH, pulled by the NCCIH, to use ME to set up and substantiate an interoception framework of illness.

Spoiler: Spoilered for length, but the content matters a lot

It's been mentioned here before (see e.g. vid here), but what Walitt has said about chemobrain and fibromyalgia is very important to take along as it tells you what you need to know about the framework he's trying to establish for ME. They can be found at:

Chemobrain: a critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy - PubMed (nih.gov)
and
Brian Walitt’s Radical Bias: Disorders of Subjective Perception, ME/CFS as Normal Life Experience? | Thoughts About M.E. (thoughtsaboutme.com)

(I've got a ton of comment, a major one that he's using psychiatric terms wrong to fabricate the framework that he wants.
Reading these two sources together after finding what I found a couple of days ago was really disturbing.)


And then there's more context to Walitt and the NIH activities:

"Since arriving at NIH in 2013, [Walitt] has served as the Medical Officer of NINR, NIDCR, and the acting Clinical Director of NCCIH." link

So he's been working at the NIH division of nursing research, and its division of dental and craniofacial research.
In 2021 he gave an interview on this Long COVID and ME research at NIH in his role as Medical Officer in the Symptom Management Branch at the National Institute of Nursing Research (NIHR). link

But he got a more prominent position, as acting clinical director, at the NCCIH, NIH's National Center for Complementary and Integrative Health. You can find my discussion of them and a link to their aims and mulit-year strategic plan in post 661. I can't say since when he has been at this post yet, his presence there is rather hidden. But I found this 2019 organogram of the NCCIH structure:

Walitt is acting clinical director of the NCCIH's Division of Intramural Research and acting chief of its clinical investigations branch.
So he is leading in their effort to substantiate their aim of integrating "complementary and integrative" methods like yoga, mindfulness, nutrition and CBT into medicine.

Now, some interesting things started happening with Walitt and the NCCIH in 2021.
Like I said in my previous post, I found it remarkable that the term "interoception" was not mentioned once in the NCCIH's multi-year strategy plan for 2021-2025, when interoception research is listed as a "top scientific priority" for NCCIH. But I think that might be because it became so fairly recently.

From Walitt's bio:

The NINDS is NIH's National Institute of Neurological Disorders and stroke.

So, Walitt gets involved in the ME/CFS study as a medical officer of the NINR and as such collaborates with the NINDS. (This aligns with the 2021 interview linked above.) But he has also been research chief at the NCCIH (at least since before 2019).

And then out of the blue in 2021 an Interoceptive Disorders Unit is established, with Walitt as its director.

Walitt's bio says it's part of the NINDS Clinical Neurosciences Program, but the NIH's drive behind this clearly lies at the NCCIH. What this Interoceptive Disorder Unit does, or who it is looking at is unclear, as so far I could not find an online presence of this unit. But according to Walitt's bio, which lists this Interoceptive Disorders Unit as his home base, his "research protocols focus on deeply phenotyping persons with disorders characterized by aversive symptoms that develop after exposures, such as infection."

The "interoception"concept is used to launch BPS2.0. (A recommended overview read is Interoception: A Multi-Sensory Foundation of Participation in Daily Life - PMC (nih.gov) by Schmitt and Schoen.)
From what I've seen in a quick scan, all signs point to it still being in its infancy,
The interoception focus at the NIH is, as far as I can tell, obviously recent, and also as yet mostly a theoretical framework awaiting substantiation. That they established a unit that focuses on "Introceptive Disorders", one that is intent on determinating ME, and other post-acute infectious illnesses like COVID, under that term, is putting the cart before the horse, and for me it looks indicative of an aim to fabricate the entity and then catch people in that net as recipients of NCCIH-desired pseudo-medical treatment.

The May 2021 Strategic Plan by the NCCIH does not mention interoception.
Its page naming "interoception research" a "top scientific priority" is first caught by Waybackmachine on 14 June 2021, site last updated then on 14 June 2021 (indicating that was the day it was put online)
Walitt's bio as director of the Interoception Disorders Unit is first caught by Waybackmachine on 26 September 2023, last reviewed then on 8 July 2022


Last November saw the 2nd "Annual NIH Investigator Meeting for Interoception Research" (The first was in September 2022, again illustrating a budding stage of an aim to establish and develop interoception as a thing at NIH. link).

"This investigator meeting on November 11, 2023, highlighted recent advances in interoception research as relevant to the National Institutes of Health (NIH) Blueprint for Neuroscience Functional Neural Circuits of Interoception Initiative. The meeting was hosted by the National Center for Complementary and Integrative Health (NCCIH),a component of NIH."

The opening remarks were by

• Helene M. Langevin, M.D., Director, National Center for Complementary and Integrative Health (NCCIH), Walitt's boss overseeing the NCCIH aim, and
• Walter Koroshetz, M.D., Director, National Institute of Neurological Disorders and Stroke (NINDS). So I think we found an answer to Koroshetz' responses defending "effort preference" and

Because he's on board.

Program and video can be found here.

None of this took away the impression I got from the finds in my earlier post. It actually strengthened the notion that ME and the patients participating in the study are being used as tools in an institutional and personal effort to establish that the interoception framework has merit and can be a target for "complementary and integrative" treatment. To me it seems obvious that Walitt managed to get his disturbing views a home, and that, together with supportive actors, he's in the process of framing ME, LC, and others as an interoceptive disorder via the invention of "effort preference", which can then be justified as a treatment target.

(Edited on 21 March to strike through incorrect remark that interoception research was not mentioned in the 2021 NCCIH strategic plan.)

 

Time's ripe for another BPS empire.

Still, it seems harder to bring US scientists to heel than in parts of Europe. Even if that does mean more of them end up on remote hillsides, dressed as trees and talking to themselves.

 

US ME advocates have begun to tweet about Brian Walitt's role at the NIH.

Jeanette Burmeister ( author of the second link posted by Arvo in his introductory post on this thread) posted a tweet 11 hours ago linking Walitt to the Interoceptive Initiative at the NIH. Unfortunately I don't tweet but, if someone who does could get it here, it would take us forward in learning what is happening in the US advocacy field. There are one or two follow up tweets linked to tweets from other advocates.

 

Jeannette Burmeister
@JKBurmeister

Kudos to
@twoShaws
for this find: Walitt is head of NINDS Interoceptive Disorders Unit. His focus: disorders characterized by aversive Sx after exposures, e.g. infections. Translation: the new & improved version of “false illness beliefs.” NIH unleashed him on ME, GWI, & LC pts.

 

Feels like a medical coup took place during the depths of covid, and now potentially millions of sick are at risk.

 

If anyone has a draft or a message already prepared, I'd like to send to NIH leadership asking that Walitt be nowhere near ME/LC research going forward (and Nath too from my vantage point after this, personally - and my contacts in the LC community have voiced the same about concerns with Nath).

I met with my 2 Senators & Rep virtually specifically about Walitt this week, but I haven't had the spoons to undertake a concise, pointed message to NIH yet. If any draft one here, I will send to all the NIH contacts I can send to.

 

Covid also seems to have played another role, that of covering how few ME patients wanted to participate in the study. In March 2018, we heard from Brian Vastag
https://www.s4me.info/threads/usa-n...-nih-intramural-me-cfs-study.2980/#post-53647

that 16 patients had completed visit 1 of the study but they needed to recruit more. The final total was 17 so they did not have much success in increasing patients. Covid did not come along until Jan/March 2020 so there were almost 2 more years for this recruitment to take place. I would imagine that second visits took place in this time but for validity this study needed more ME numbers. It was not covid that was affecting recruitment in 2018 and 19, in fact covid seems to have rescued the study from criticism about numbers.

 

Wasn't there also a chronic Lyme study which started to recruit way back in the latter 90's and, last time I checked, was still recruiting? Could be that ME/CFS wasn't the only area some sick people were apparently wary of the NIH.

I worry that any contested disease may attract the attention of this interoceptive group.

I hope every ME/CFS researcher and /or clinician writes their outrage, both individually and collectively.

If there are other contested disease groups watching, they may wish to contribute their voices, because if it can happen to us, it might happen to them.

 

It’s a large trash can and there is room for all of us inside. May feel a little stinky dank and fetid inside but that’s simply a perception the researchers will surely educate us out of.

 

Yeah this is now looking like the medical research equivalent of regulatory capture. It's deeply disturbing and should never have been allowed to happen. It might be very valuable if we could talk to someone who was part of the study (i.e. investigator not patient) who has information on how this went down.

These researchers are infiltrating like cuckoos. This study, the redefinition of pacing as GET by stealth. It's scary, frankly.

 

Totally, @V.R.T. - I struggle with how to best articulate in writing about this deeply disturbing development to NIH officials (I have attempted to Congress)

 

Including Nath is only fair. He can hardly claim innocence in this as he's been there for the entire process and dismissed our worries from the very start.

 

Does anyone think we should try this route? Just was wondering.

'Research Misconduct: Research misconduct is defined as fabrication, falsification and plagiarism, and does not include honest error or differences of opinion."

https://grants.nih.gov/help/report-a-concern#research

'Who to Contact:'

• NIH Extramural Reasearch Integrity at NIHResearchIntegrity@mail.nih.gov
• HHS Office of Research Integrity at AskORI@hhs.gov

'Requirements for Making a Finding of Research Misconduct'

• There be a significant departure from accepted practices of the relevant research community;
• The misconduct be committed intentionally, knowingly, or recklessly; and
• The allegation be proven by a preponderance of the evidence.'

https://grants.nih.gov/policy/research_integrity/requirements.htm

 

This is definitely bad science and it would seem that Walitt, at least, went into this study wanting to find that ME fitted into his own psychosomatic/functional preconceptions (perhaps regardless of any outcomes), but do we have a ‘preponderance of evidence’ demonstrating intentional misconduct?

We certainly need to clearly set out what is wrong with this study and ensure that the wider research community recognise this. Also raising the issue of research misconduct may help get our point across, however I suspect any attempt to press a formal case of misconduct will fail. The reluctance of the research establishment to address such issues can be seen in the failure of the UK establishment to accept the egregious failings of the PACE study.

[added- Perhaps the key question is how best to get the NIH to understand something has gone very wrong and to ensure future funding does not get sucked down the same rabbit hole.]

 

Here is some more more info that can be slotted into the timeline of events regarding Walitt, the interoception project and the NCCIH:
(Some of it is known already on S4ME, putting it here as part of the collection.)

Spoiler: Timeline events Walitt/interoception/NCCIH

• According to MEpedia, Walitt was part of a very small study that did not use the Pain Catastrophizing Scale correctly, making it seem like the outcome matched their view on catastrophizing. (Putting it here because I was reminded of the use of EEfRT to create an effort preference narrative.) Source: Brian Walitt - MEpedia (me-pedia.org)

• It became known that Walitt would be the lead clinical investigator for the ME/CFS study (as a medical officer of the NINR) in February 2016.
• On 3 November 2016 it became public that Edward Shorter, notorious misogynistic & maliciously ablist ME-denier, was invited by the ME/CFS special interest group to speak at a gathering for the NIH intramural program on 9 November. Koroshetz was asked to reverse this decision. He did not. Instead he treated it like a harmless exchange of information, and exchange of views. Further inquiry revealed that:
  Sources: An Open Letter to Dr. Koroshetz | Occupy M.E. (occupyme.net); Dr. Koroshetz Responds | Occupy M.E. (occupyme.net);Walitt Invited Shorter and Nath Approved Him (mecfsfromme.blogspot.com); The Proverbial Olive Branch | Occupy M.E. (occupyme.net)

• The original intention was to have finished the ME/CFS study before the pandemic, in 2018 or 2019, which got postponed. Source: History of Changes for Study: NCT02669212 (clinicaltrials.gov) (see also: Myalgic Encephalomyelitis Chronic Fatigue at the National Institutes of Health - Tabular View - ClinicalTrials.gov)

• Walitt was appointed at the NCCIH in early 2019. The NCCIH reported it in its bulletin of 25 April 2019:

Source: New Issue of NCCIH Update: ADHD & Complementary Approaches; New Acting Clinical Director (govdelivery.com)
​

• 13 April 2020: posting of NIH Funding Opportunity Announcement (FOA) PAR-20-168. Its purpose:

Full text: PAR-20-168: Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed) (nih.gov)​

Part 2, section I, lists NIH institutes with a special area of interest. At the top of the list we find the NCCIH:​

• 13 april 2020, release of FOA PAR-20-165, which has NCCIH among its participating orgs. Its purpose states:

Part 2, section I, lists NIH institutes with a special area of interest. At the top of the list we find the NCCIH:​

National Center for Complementary and Integrative Health (NCCIH) - NCCIH will accept applications investigating the mechanisms by which complementary and integrative health approaches may improve ME/CFS treatment and/or ME/CFS comorbidity management. The proposed research may include basic and mechanistic studies in cellular systems or model organisms, as well as clinical mechanistic studies to develop improved complementary intervention strategies for ME/CFS and its associated comorbidities. Complementary and integrative approaches may include mind/brain-focused practices (i.e., meditation, hypnosis), body-based approaches (i.e., acupuncture, massage, spinal manipulation), meditative exercise (i.e., yoga, tai chi, qi gong), or natural products (i.e., botanicals, dietary supplements, probiotics), in isolation or in combination with conventional medical treatments. NCCIH will not fund applications examining clinical efficacy and/or effectiveness through this PAR.​

[/QUOTE]

Full text: PAR-20-165: Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R01 Clinical Trials Not Allowed) (nih.gov)​

• 5 November 2020: Release of a Notice of Correction to Specific Areas of Research Interest for PAR-20-168, NOT-NS-21-013, issued by the NINDS and NCCIH.

Its purpose states:

The NCCIH section mentioned above was removed. Inquiries can be directed at Vicky Whittemore at the NINDS. It looks like there was a mixup and they put the NCCIH portion of Funding Opportunity Announcement PAR-20-165 in PAR-20-168.​

Full text: NOT-NS-21-013: Notice of Correction to Specific Areas of Research Interest for PAR-20-168 "Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed)" (nih.gov) @Sly Saint posted about it at the time here.​

• Februari 2021: Online article by Walitt and Bartrum on Long Covid: A clinical primer for the expected and potential post-COVID-19 syndromes - PMC (nih.gov) (In its conclusion it states: "We suspect the most complex problems will arise at the neuropsychiatric level, created from the interactions between the neuronal specificities of COVID-19, the functional architecture of the brain, the mechanisms of neuronal injury, healing, and plasticity, and how these neuronal mechanisms are influenced by the concomitant activation of biological stress mechanisms invoked by critical illness and sociocultural stressors.") Contact address is Brian Walitt at the NINR

• 3 September 2021: NIH announces funding of 7 (non-ME/post-acute infectious disease) interoception research studies:

Link: NIH research projects on interoception to improve understanding of brain-body function | National Institutes of Health (NIH)​

• 22 October 2021: A NIH telebriefing on the ME/CFS study. S4ME's @Hutan reports:
  And:

See more here and here​

​

If it's actually helpful in a practical way I might be able to create a doc that puts all the info together in one timeline in the next week(s) for a better overview. Otherwise I will not.
I think this all is very important context of the NIH ME/CFS study, but I'm not going to pursue it further atm; it asks way too much of me, and I need to rest, recover, and then, if I can, write further on other things with the limited energytime I have.

For myself, I think I am making more sense now of the paper and it's rickety argument and substantiation of effort preference, Nath and Komaroff's weird interview bit, Nath and Koroshetz' responses, the strange answers on the Q&A page on "What is effort preference?" and "Why was a reward task part of the study?", and more.

The substantiation for the effort preference part of Walitt et al was weak, as is the claim that it plays a key part in ME/CFS. If it was a single, individual small study it wouldn't be something to worry about a lot. What worries me is that the paper seems like an opening salvo of an organized attempt to stuff ME/CFS and sister diseases into an interoception framework/model by a well-funded and dominant US institution. Like I said earlier:

It might seem relatively harmless to other researchers now because it's so feeble, but this will be stubbornly pursued. More papers will follow. And when there is a small layer of pseudo-evidence for this model, the Interoception Disorders Unit, led by Walitt, seems to stand in the wings ready to enter the stage as a knowledge center. And then researchers and patients will have another period of "debate" and "controverse" on their hands, while this stuff diverts money from good research and keeps knowledge muddy. So I hope this is not underestimated (or other factors will prevent this being a repeat of the psychiatry takeover in the 20th century).

 

Here are some Occupy ME blogs by Jennie Spotila. This is what I found on a quick search and wanted to post them here.

I tried to copy a section from https://occupyme.net/2016/11/03/an-open-letter-to-dr-koroshetz/ but the paste wouldn't format correctly and I couldn't fix it so I took a screenshot instead.

 

I have been working through this and the other threads and most of my questions have already been followed up. Thank you all.

My last one is this.

In Wallit's new Kingdom of "Interoception disorders" where do the fMRI tests come from?

He is not a brain expert or neuroscientist.

Do the fMRI tests used in the NIH paper come from the psychobabble school and who else uses them and why?