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

The National Center of for Complementary and Integrative Health (NCCIH) uses their own redefinition of interoception as starting point for their recent focus on interoception research as a "top scientific priority":

(Link here, additional info and links in my earlier posts.)

That might also explain why the attempts to explain "effort preference" by Koroshetz' division and the Q&A are so weird, because they put this whole new layer of interpretation & internal world stuff in there, and when they try to make it sound purely biological and sciency, and not influenced by mind like what the psychosomatic Walitt explanation actually means, then it becomes strange.

They seem to mix physical sensation signalling to the brain, internal reactive processes and mind (decision making) into one to explain a claimed key characteristic of ME/CFS that the patient is "avoiding" activity, while excluding other physical processes from that narrative that account for the patient's disability .
They claim the "brain" makes "decisions" based on "energy", based on a fatigue-distorted "motivation" test that is based on information-steered (chance/monetary value )and disability-influenced choices and actions by the person with the brain, not "the brain" itself like some live-in symbiot symbiote .

(Maybe I don't get it comepletely right, but I get the sense that it is so muddled because they try to force something into a shape that it is not as they try to defend the indefensible.)

(At the NIH Blueprint for Neuroscience workshop on interoception a chap called Lee got to make a key point that "Functional somatic symptoms are a major health care problem that can be attributed to false interoceptive inference.")

 

It is intriguing that this NCCIH seems to be founded on the basis that people with non-existent disease particularly deserve treatments that haven't been shown to work.

Maybe they realised that for non-existent diseases treatments can't work, but since these people keep coming they need a good range of non-working treatments to keep in business.

 

2 more additional puzzle pieces:

Walitt's old NCCIH, Division of Intramural Research page.

In January 2016 it said he still was Director of Clinical Pain Research for the NCCIH Intramural Laboratory of Clinical Investigations. He "will provide his medical and scientific expertise to the development and oversight of intramural clinical protocols." HE also educated "NCCIH trainees about various chronic pain syndromes"(we know from the 2013 lecture that he counted ME/CFS among them.) And the top 2 of his 3 item research interests list:

• Pain and related interoceptive disorders (i.e. fibromyalgia, chronic fatigue)
• Social construction of illness and disease

Spoiler: Text

Director, Clinical Pain Research, Clinical Investigations Branch
Division of Intramural Research
National Center for Complementary and Integrative Health (NCCIH)
[&location info]

As Director of Clinical Pain Research for the NCCIH Intramural Laboratory of Clinical Investigations, Dr. Walitt will provide his medical and scientific expertise to the development and oversight of intramural clinical protocols. He will help identify patient populations for pain studies, as well as educate NCCIH trainees about various chronic pain syndromes. Dr. Walitt has a dual role as a medical officer at the National Institute of Nursing Research.

Dr. Walitt has been awarded multiple honors at the local and national level in recognition of his research in the areas of pain syndromes and general rheumatology. He was most recently awarded the American College of Rheumatology Investigator Award for his study entitled “The effects of exercise therapy on brain function in fibromyalgia.” Dr. Walitt is an associate professor of Medicine at Georgetown University Medical Center and the research director and associate director of the Division of Rheumatology at Washington Hospital Center. He has active research collaborations in the field with research labs at Georgetown, the National Institutes of Health, and the University of North Carolina and will be continuing research efforts with investigators both nationally and locally.

Research Interests:

• Pain and related interoceptive disorders (i.e. fibromyalgia, chronic fatigue)
• Social construction of illness and disease
• Inflammatory arthritis and autoimmune disorders

[bolding mine]

The last time this page was captured without an error message was 5 January 2016
Brian Walitt, M.D., M.P.H. | NCCIH (archive.org)


And the February 2013 NCCIH lecture by Walitt I mention in the PDF (Demystifying Medicine 2013 - Pain: How It Happens and What Can Be Done? Link to slide file in PDF) has also been put online.
Demystifying Medicine 2013 - Pain: How It Happens and What Can Be Done? (youtube.com) and NIH VideoCast - Demystifying Medicine 2013 - Pain: How It Happens and What Can Be Done?

Not a recommended watch of course, but relevant for those looking into Walitt's beliefs and claims. (I only watched the beginning because I wanted to know how he was announced. Walitt joined the NCCIH in 2013, but contrary to what I thought, it appears he was not yet appointed there in February. It was a duopresentation/collaboration with Catherine Bushnell, who would become a colleague of Walitt's at the NCCIH. Walitt speaks at the beginning and the end.)

 

Indeed, this is the sort of parroted empty drivel I got used to from 'pain specialists' thirty years ago. The most salient thing is the lack of any actual understanding of the 'evidence' being presented. A word salad of non sequiturs if you like.

And the chairman introduces them as from the 'alternative medicine section' with a straight face.

 

This made me check the introductions again, b/c I thought Walitt was not yet part of NCCIH in February 2013. And this led to another puzzle piece.

I suspect if I'd look at the whole thing this looks like a presentation that might hav been Walitt's ticket into NCCIH (or a sign he was on the cusp of being appointed). It's a duotalk with Bushnell, who, according to this video, had just started working for NCCIH. Walitt was her near future colleague, together they ran -and possibly still run- the NCCIH division for intramural research..

I can see why Walitt was quickly taken up by her, given his views and activities. He started working for the NIH -and presumably the NCCIH alongside Bushnell- in 2013.

By 2015, Walitt was certainly working beside her. In 2015 he was the Director of Clinical Pain Research for the NCCIH Intramural Laboratory of Clinical Investigations. Around early 2019 he was appointed acting clinical director of their Intramural Research Program, under Bushnell.

(The text is strange because he was already part of the NCCIH for at least 4 and likely 6 years, connected to the NCCIH intramural team, see e.g. 2 posts back #63.)

The earlier-posted 2019 NCCIH organization chart again shows his position within NCCIH and that he was working closely with Bushnell.

 

In the minutes of the June 2019 meeting of the NCCIH's advisory council, Walitt's promotion is mentioned when discussing staff changes at the NCCIH.

The Annual Report on the NCCIH's Division of Intramural research was discussed. Bushnell is still its scientific director. The DIR:

At that time, the DIR is made up of two branches:

• The Pain and Integrative Neuroscience Branch, lead by Bushnell, which has a subsection that "focuses on characterizing the psychological and neural mechanisms by which expectations and other cognitive and affective factors influence pain, emotional experience, and clinical outcomes." (led by Lauren Atlas)
• The Clinical Investigations Branch (CIB), that focusses on "mechanistic clinical research targeted at understanding the development and maintenance of chronic pain, as well as nonpharmacologic treatment modalities such as cognitive behavioral therapy (CBT), meditation, and music. The CIB provides a clinical setting and the medical expertise to evaluate people with a wide range of painful disorders." Walitt is its acting director.

(Again posted for easy reference: the 2019 NCCIH organization chart)

It looks like Walitt, after working alongside and under Bushnell as Director of Clinical Pain Research at the CIB branch of the DIR in the years before, got promoted to returned to his old NCCIH workplace as (edited) Acting Director of the DIR because Bushnell was busy setting up a new pain center at the NIH. Their work at the NCCIH was getting a better position it seems, and Walitt was involved in that project (edited to add: ) as well. The minutes say:

Spoiler: Some more info on the pain center because it may be relevant

When asked if the pain center initiative was bottom-up or top-down, Bushnell "described the project as a mixed model in which the idea is to have the facility available", and he subsequent comments read very much like it's their initiative that, because of their pushing it, creates an interest higher-up.

Bushnell's eventual succesor, and also current acting director of the pain center, (Edited to add: David Shurtleff)

When asked how "to leverage the results from the pain center for the long term" Bushnell answered that "DIR’s unique opportunity is rare disease states and the related pain phenotypes."

I've added these things because Walitt has been collaborating in these things as Bushnell's right hand since at least 2015 and probably earlier (2013). It may be relevant to the establishment of his interoception disorders unit.

Council Minutes June 2019 Clean CL -9-10-19 (nih.gov)

By September 2020 Bushnell quit the DIR leadership to go head the new NIH pain center. It looks like Walitt's acting directorship stopped there as well, although it still remains unclear to me if or when he left the NCCIH, and wheter he moved to the pain center with Bushnell. It is possible this is where they parted ways as Walitt was at this time probably preparing for the establishment of his own unit for interoceptive disorders at the NINDS, which opened in the summer of 2021.

Highlights of "recent" NCCIH-funded research includes "A qualitative study from the intramural programs of several NIH institutes and centers (ICs) on the complex symptomatology of myalgic encephalomyelitis/chronic fatigue syndrome."

NCCIH Org Chart update 04_2022 01 (nih.gov) Edited to add right source: september-2020-council-minutes-508.pdf (nih.gov)

Note that as yet I have not come across ME/CFS as a key focus of the NCCIH, although it fits in their bps approach. I suspect we are mainly looking at Walitt's influence, who, also as part of his NCCIH work, has been consistently treating ME/CFS alongside fibromyalgia as an "interoceptive disorder", like a mistaken "sensation of fatigue" on par with "a sensation of pain", and his views align with his and his NCCIH's colleagues' views and focus methods on pain.

 

Now I know his background is rheumatology and nothing to do with neuro the idea of this being with intentions to find some ‘good cure that might be science fiction but at least heart in right place from someone somewhere ’ seems even less likely / I’m even more cynical.

Not that there aren’t lots of neurologists wanting to FND people who’d happily queue for this funding for writing such manifestos but I don’t get how someone got away with funding HiM - it’s very confusing

 

I keep promising myself that this is the last one - and I really hope this is it for a while. (I'm not researching this, but I keep finding relevant stuff when I'm looking around to satisfy my own curiosity.)

But I found it important to document that Walitt's time at the NCCIH is divided in two periods.

Spoiler: detail

In July 2012 NIH's alternative medicine branch, the National Center for Complementary and Alternative Medicine (NCAM, in 2014 renamed NCCIH) launches "a new intramural research program on the brain and pain" that, under scientific directorsip of Bushnell, "focused on perceiving, on the brain's role in perceiving, modifying and managing pain."

Presumably in 2013 Walitt was appointed to join her at the same research program based on his focus and views on fibromyalgia. (Given he was organising and leading research and a unit focused on pain in fibromyalgia as a distortion of perception and applying fMRI - NCCIH's focus on yoga, massage, mindfulness, music therapy etc. will probably have fitted him well too.)

Since at least January 2015 he has been part of the staff of the Clinical Investigations Branch of the NCCIH’s Division of Intramural Research, where, as Director of Clinical Pain Research he continued his established interest of researching fibromyalgia and “chronic fatigue” as (self-named by him) “interoceptive disorders”. The other two staff members were a nurse practitioner and a MRI Data Analist. (His research interest was also the “social construction of illness and disease.”)

He stayed in this function until at least January 2016.

Then, coinciding with his appointment to the ME/CFS intramural research, he disappears from the NCCIH DIR Clinical Investigations staff page between 5 January and 29 March 2016.

In 2019 he pops up again. (Hence the language of him “joining” the NCCIH then, he was returning.) In or just before April 2019 and until at least after 20 February 2020 (and quite likely until August 2020) he was Acting Clinical Director,of the NCCIH’s Division of Intramural Research and Acting Chief of its Clinical Investigations Branch. (And helping his former NCCIH colleagues by temporarily coleading the NIH pain center project which looks like an expansion of their NCCIH activities, see post #66 above.)

His NCCIH bio as acting clinical director says:

.

 

Part 1/2

I can not tell you what Walitt's motivations are, but Walitt's appointment as a lead researcher in the NIH ME/CFS project looks, if you take ME/CFS seriously as a severe immuno-metabolic illness, very out of place. So we're back at:

Unless I missed it, I did not find any publications on ME/CFS by Walitt (edited to add: on Pubmed) prior to 2016, and then in 2016 only one where he takes the initiative to lump it together with other things according to his view of ME as a somatoform disorder and the result of faulty signaling (see next post). He might have boasted clinical experience with ME/CFS, but that was only while focused on fibromyalgia and simplisticly pulling ME/CFS in the same psychosomatic "mistaken perceptions" framework as basically the same thing.

And his experience as an institutional researcher does not weigh up one bit against his prejudice. Maybe the NIH was so barren of ME/CFS researchers after years of neglect and dismissal that Walitt was sort of the best they could get? But then there's still his views and activities at the time of his appointment that seem to have been injected into the ME/CFS study. Even if Walitt was supercharming in a job interview and Nath & co sort-of told themselves it would be ok, it's still strange: how did Walitt's aim of confirming his psychosomatic views of ME become part of the study protocol? Have his superiors been sloppy, persuaded, sharing his views?

At the time Walitt was appointed, he was Pain Director at the NCCIH's Clinical Investigation's Branch of their Division of Intramural research, which since its foundation in 2012 was focused on "the role of the brain in perceiving, modifying, and managing pain, with an emphasis on mechanistic studies". (See more in post #63, #65, #66 and #68 above). His career was built on fibromyalgia, but he already had a consistent and 5-year track record of calling ME/CFS a disorder of perception, which he self-styled an “interoceptive disorder”. When considering his intentions and activities around the time he was appointed by Nath for the ME/CFS intramural study, it personally looks to me like he used the study to pursue his own goal of providing a biological underpinning for his view that patients have a “discordance between the severity of subjective experience and that of objective impairment”.

In September 2015, at the absolutely scandalous but view-wise consistent interview Walitt gave at a rheumatology conference, it is clear that, like the dutch/European wing of the psychosomatic movement, he was interested in justifying his psychosomatic views by finding underlying biological "proof" of it via brain imaging research. (In line with the NCCIH DIR beliefs and focus.)

Spoiler: details

(transcript by Jeannette Burmeister)

…

…

Continued in next post.....

 

Part 2/2, continued from post #69....

This notion that at the time of his appointment Walitt is interested in confirming his belief via brain imaging, also in ME/CFS, is further confirmed by his NCCIH publication of (abt.) March 2016, Neuroimaging of Central Sensitivity Syndromes: Key Insights from the Scientific Literature - PubMed (nih.gov). (In the same period NCCIH co-author Ceko had an article published in November 2015 called Can we exploit cognitive brain networks to treat chronic pain? - PubMed (nih.gov))

In "Neuroimaging..", in classical bps-movement style, Walitt et al lump together five conditions (including ME/CFS) under the umbrella term "central sensitivity syndromes", justified by the usual (and certainly in the case of ME/CFS disingenious) claim that "The scientific underpinnings of these disorders are not currently known", and they "review the results of neuroimaging applied to [these] five central sensitivity syndromes" (including ME/CFS).

Spoiler: detail

In its introduction, it says:

One section discusses "evoked fatigue in chronic fatigue syndrome." It says:

Reference 125 is The neural correlates of fatigue: an exploratory imaginal fatigue provocation study in chronic fatigue syndrome - PubMed (nih.gov), with a lead and several other authors from the King's College Psychiatry Department, including Trudie Chalder. Peter White helped with recruitment. To me it looks like another from a series of attempts from the bps movement to induce "fatigue" and then use fMRI to link it to a brain area that fits the psychosomatic belief they want to “prove”.

Its introduction says:

It also says:

An it even uses the new BPS buzzword interoception to explain the good old "faulty perception" dismissal of symptoms:

Walitt et al's NCCIH neuroimaging evaluation of ME/CFS also references the dutch CBT pushers, a study including Bleijenberg and Van der Meer that is obviously meant to substantiate CBT as a valid treatment suggestion for ME/CFS via brain imaging, as a source for discussing gray matter in ME/CFS. Increase in prefrontal cortical volume following cognitive behavioural therapy in patients with chronic fatigue syndrome - PubMed (nih.gov)

Walitt got to continue his interest within the ME/CFS study. He got to measure grip strength while fMRI-ing ME/CFS patients, linking results to a brain area he claims "is focused on determining mismatch between willed action and resultant movement", and he got to "test" the choice patients made between "low" and "high" effort, bippety-boppety-booing an "effort preference" out of that, and mixing it all together as a "defining feature" of ME/CFS, conform his beliefs. He got to tell the press that: “We may have identified a physiological focal point for fatigue in this population...Rather than physical exhaustion or a lack of motivation, fatigue may arise from a mismatch between what someone thinks they can achieve and what their bodies perform.”


Lucky, lucky man. Who let him?

 

I'm not suggesting it was deliberate, but that's another worry about only studying recently diagnosed people. It takes a number of years to get wise to the way all this works, meaning it's much harder for new patients to make informed decisions about which research (and researchers) to support.

 

I fully expect these to be dismissed, but I felt I had to at least try. I completed the following today:

- I filed a suspected ‘Research Misconduct’ with the ‘Agency Intramural Research Integrity Officer (AIRIO)’ that oversees NIH Intramural research (https://t.co/hRdxdhCtfx). They also have three individuals listed with AIRIO to share intramural-related study concerns at NIH with.

- I wrote today to my Regional Manager in the Office for Civil Rights, U.S. Department of Health and Human Services (HHS) to surface my concerns on the study, and what I feel warrants ‘Research Misconduct’ per HHS guidelines.

- I submitted a complaint to the HHS Office of Research Integrity & submitted a ‘Office for Human Research Protections (OHRP) Research Complaint Form’

 

On what grounds do you argue research misconduct? It is defined as "fabrication, falsification or plagiarism in proposing, performing or reviewing research, or in reporting research results and does not include honest error or differences of opinion", and although there is a lot wrong with this study and its context that should be confronted, I don't see how research misconduct in itself can be argued.

(I suspect that there might be a case made for breaching scientific integrity, but that would need more time, analysis and information requests to see how strong it is and there are still open questions that need to be answered.)

 

From AIRIO: “We will assess this matter and get back to you within 30 days.”


I feel this warrants consideration for RM under the NIH Grants & Funding guideline below.

'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;

 

"Very close to" won't cut it, I suspect there's a high and probably quite specific treshold before the NIH would condemn or even investigate such things. Regarding conduct, I still think there might be better results when discussing this in the realm of QRP's and putting the study analysis and context on the table together.

Also, even if going this way, don't you think it's also too soon to be taking such steps? Has there been enough preparation and certainty, all the necessary things already looked at, to be able to make this claim as effective as possible?

(Of course I could be gauging the situation wrong, but to me atm this seems too much & too soon.)

 

This info belongs next to the notes PDF/post I made on Walitt's first unit for interoceptive disorders and his history of treating ME/CFS as a disorder of subjective perception.

Short summary

• 2008: Walitt's study protocol for Functional Magnetic Resonance Imaging as a Surrogate Measure of Fibromyalgia Symptoms, which aimed to link fMRI images of fibro patients to their pain sensation, and both fMRI images and pain sensation to the influence of a six-week exercise program. (He also took blood samples at each of the four questionnaire & fMRI research visits "to determine if your blood and immunological proteins change in a similar manner to your symptoms and your changes in brain function as measured by fMRI.")

Spoiler: Its purpose according to a patient invitation

Its purpose according to a patient invitation:​

“This study is being done to determine if a special type of magnetic resonance imaging (MRI) can be used to measure the symptoms of fibromyalgia. The pain of fibromyalgia is very difficult to measure and the cause of fibromyalgia is unknown. It appears that abnormal function of particular parts of the brain and spinal cord can cause and maintain the pain of fibromyalgia. It is possible to measure the function of these parts of the brain and spinal cord using a non-invasive technique called functional magnetic resonance imaging (fMRI) which uses magnets to take pictures of how the brain is working. By taking pictures of the brain with fMRI before and after interventions designed to positively and negatively change your fibromyalgia symptoms, we hope to determine how the activity of your brain and spinal cord change in relation to your symptoms. We hope to use these fMRI techniques to be able to determine if a person has fibromyalgia, to help determine if future therapies work, and to better understand the cause of the illness itself.” (OCR used for transcript, bolding mine)​

• 2009: Walitt, the rheumatologist "with an interest in understanding disorders of subjective perception, such as fibromyalgia and chronic fatigue syndrome" speaks to a local gathering of an ME/CFS org and asks patients to volunteer for his study "For only when we understand what has happened to those whom suffer with invisible pain and fatigue can effective relief be developed."
• 2010: opening of the Fibromyalgia Evaluation and Research Center (FMeRC) at Georgetown University under directorship of Walitt - it's Walitt's first unit for what he styled "interoceptive disorders"
• 2011: Interview on Walitt's work and his unit, which gave me the impression that the aforementioned study was still going.

More details in PDF.

And indeed, it appears that by 2011 the study was still running. From 5 April 2011 to 30 August 2011, Walitt ran a series of adverts in the free local newspaper Express (at least 9 for patients, and 1 for volunteers) to recruit participants. In October 2012 two other adverts might also have been connected to this study.

The patient ad ran:

The 2011 volunteer ad ran:

The October 2012 ads ran:

I have not found a publication coming out of this study, but I thought it relevant for documenting Walitt's activities 2008-2012, at his first "interoceptive disorders" unit.

I'll add three images, one of the fibro patient recruiting ads (Express, 2 Aug 2011), the volunteer ad (Express 31 May 2011), and one of the two October 2012 ads (Express, 16 Oct 2012).