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

Puzzle piece (activities Walitt pre-NIH):
RePORT ⟩ RePORTER (nih.gov)

In 2011 and 2012 Leorey Saligan got funds from the National Institute of Nursing Research to research "Correlates of fatigue in fibromyalgia and chronic fatigue syndrome"; he collaborated with Walitt at the Georgetown University Medical Center and Washington Hospital Center (presumably his "interoceptive disorders" unit FMeRC).

Walitt has published a series of papers with Saligan, including the ones on chemobrain and on catastrophizing in fibromyalgia (where according to MEPedia they did not use the Pain Catastrophizing Scale correctly, link to post).

Saligan is currently clinical collaborator under NCCIH deputy director David Shurtleff at the NIH pain center. He's also an author of "Deep phenotyping" Walitt et al 2024.

 

Ok, this is going to be a big one. Apologies for the size of the text.

In 2018, a group around NCCIH branch director Wen Chen established an project to research their desired mind-body view, which they called interoception, for the benefit of NCCIH’s goal to integrate alternative practises and wellness activities like yoga, music therapy, meditation, and mindfulness into medicine. This initiative got launched in 2019 with a work shop, taken up as a new branch under the NIH Blueprint for neuroscience initiatives, under directorship of Walter Koroshetz of the NINDS.

It looks like Bushnell and Walitt’s activities and views around pain at the NCCIH's intramural Division became a wider NCCIH project, probably via pain, meant to reach NCCIH goals. There are several NIH institutes, centers, and offices involved, but NCCIH is clearly the lead office, the central hub that initiated and pulls the project.

They redefined interoception (link and link), created a funding pool to attract researchers, and they are now in the early stages of getting their preferred mind-body view, their redefinition of interoception, and eventually that alternative practices can treat physical ailments through targeting how it feels and how sensations are interpreted, via research and publications.

While ME/CFS is not explicitly part of the effort yet, there are many clues that the red carpet is being rolled out to pull it in:

• The roots of NCCIH’s interoception project obviously lie with Walitt and Bushnell’s activities of researching and considering pain at NCCIH (see other posts);
• Walitt researched “interoceptive disorders”, which he considers fibromyalgia and “chronic fatigue” to be, at NCCIH;
• Koroshetz’ facilitation and acceptance of the interoception project and its redefinition of interoception (see PDF below);
• Koroshetz’ words at the opening of the 2nd annual investigator meeting for interoception research in November last year;
• The initiative under Koroshetz’ leadership (and initiative?) to open a unit for interoceptive disorders under the NINDS clinical neurosciences program in NINDS’s Division of Intramural Research (Clinical Director of that division is Avindra Nath, link.)
• Nath and Koroshetz' oddly contorted defense and explanation of the "effort preference" claim and framing in the "Deep phenotyping" paper.
• The fact that the interoceptive disorders unit has Brian Walitt as its director;
• The fact that the interoceptive disorders unit at NINDS will research ME/CFS as avoidant behaviour after an infection;
• The ME/CFS “deep phenotyping” publication itself, which links brain activity and effort “choices” to “effort preference”, and creates a model of ME/CFS that aligns with Walitts views and the NCCIH interoception redefinition (e.g. figure 10 - pathology reduced to the thing causing sensations and signals to the brain which then results in altered inner sensing and behaviour which in turn results in disability - no doubt it’s those sensations and behaviours that will then be made a target for treatment in follow-up. CBT or "interoceptive exposure therapy" already exist applied to "interoception" termed issues, see e.g. this youtube video, and this youtube video);
• The fact that “Somatic Symptom Disorders” are very much a target for the NCCIH interoception project;
• The fact that Wen Chen’s right hand in getting the interoception initiative off the ground and running and interoception redefined, Dana Greene-Schloesser, has also been a long-time member of the Trans-NIH ME/CFS working group (which she calls the “chronic fatigue working group” on her LinkedIn;
• The fact that Emmeline Edwards, member of the ME/CFS Working Group and Director of the NCCIH’s Division of Extramural Research, is Wen Chen’s boss. She also supported and gave feedback for the first 2019 workshop as well as the manuscript for the interoception redefinition;
• The fact that another member of the ME/CFS Working Group, Jonathan Hollander, is also part of the Interoception Research Working Group;
• The fact that The National Institute of Neurological Disorders and Stroke headed by Koroshetz is also the lead institute for the Trans-NIH ME/CFS Working Group.
• (Note that per 2019, at least 7 people from the Trans-NIH ME/CFS Working Group can be connected to Walitts activities and the NIH/NCCIH/NINDS interoception project: its chair Walter Koroshetz, Emmeline Edwards, Avindra Nath as clinical director of the division where Walitt’s interoceptive disorders unit is situated, Brian Walitt himself, Leorey Salingan, Dana Greene and Jonathan Hollander - Report of the NANDS Council Working Group for ME/CFS Research (nih.gov))
• The fact that interoception was brought up with a participant in the NIH intramural study on a return visit before publication:
  (EDITED TO ADD this bulletpoint)
• The fact that Hugo Critchley (non transcribed) was one of the two keynote speakers at the first 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", published 2021 (S4ME thread here) He also e.g. publicly supported Simon Wessely's claim of "false allegations" against criticism from the ME community. (S4ME thread here.) (EDITED TO ADD this bulletpoint)

Additionally it should be noted that Koroshetz, Langevin, Chen and Greene-Schloesser know eachother well because they collaborated a lot on pain and brain projects. Former NIH director Collins also collaborates with Langevin, Chen and Schloesser (and also other members of the interoception project starting Working Group and current Working Group members Changhai Cui and Coryse St Hillaire-Clarke) on a music-based interventions/music as medicine project, so they are well-connected.

NCCIH deputy director David Shurtleff is currently heading the NIH pain research center (which Walitt helped set up and lead, Shurtleff apparently took over from Bushnell?, see post #66), which has Walitt’s close colleague and “Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome” author Leorey Saligan as clinical collaborator.



In 2019, 2022 and 2023, the first three events by this new interoception endeavor took place. I have transcribed most of the opening speeches of the NCCIH Director (Helene Langevin), the NCCIH Deputy Director (David Shurtleff) and first talks of the leader of the Blueprint Interoception Research project (Wen Chen, formerly program director at the NCCIH collaborating with NINDS Blueprint initiatives and the NIH pain consortium, now serves as the branch chief for the Basic and Mechanistic Research Branch of NCCIH at its Extramural Research Division).

If you are interested in understanding the underlaying goals of the NIH’s NCCIH & NINDS-led focus on interoception, I advise you to read them, including Koroshetz’ November 2023 contribution, where it’s clear he full-on supports Langevin and Chen’s goals and adopts their interoception redefinition that emphasises interpreting and regulating signals.

Koroshetz says it’s about automatic function and “how we feel”, that it’s determining “a lot of our behaviours” (remember Walitt reduced ME/CFS to a sensation of fatigue), that this new model Langevin proposes is not completely new as “there was a lot of work in it that seemed to occur in large animals in the 50s and 60s, and maybe, maybe it was kinda left in the dust a little bit, we’re trying to resurrect it.” He’s talking about “groundbreaking new pathways to understand brain function” (reminder, Walitt et al say: “Immune dysfunction leads to neurochemical alterations that impact neuronal circuits, which may be another point of intervention” before continuining suggesting combining CBT with other therapies.)

And he says that this interoception project “not only in how the brain is receiving inputs in the ascending pathways, but also how it's controlling function in its descending pathways.”


PDF's below. If I can I'll add more links to this post later (although everything can be found online) and one final post with loose links to info; at this point my primary goal was to have it documented here. I wish I could make a full document organising and combining all my posts on this thread, but I am too unwell (and doing this made me deteriorate), and I have other things to do. I hope some Americans will see this and are able to look into it.

 

A couple of tags linked to my above post:

@Robert 1973, I am tagging you here as I think you might be interested in Koroshetz’ talk at the 2nd interoception research meeting from just a couple of months ago because of his reply to your letter.

@dave30th I am tagging you here because you are both an American and a journalist interested in ME/CFS activities, and I think you should be aware of this. I hope this may be of use to you or others in your network (journalists, patient advocates etc.). I personally think these activities should have a good research journalist and patient orgs pick it apart, because to me it looks like NIH, without substantiation but with intention, is setting up this framework of ME (and other conditions) as interoceptive disorder, cart-before-horsing their way towards it. Getting to the bottom of this is even more important given calls to establish an office of infection-associated chronic illness research at NIH.

It's also very worrisome as in effect the NIH and this project, under leadership of Koroshetz and Langevin, facilitates an already existing wider effort to “prove” psychosomatics and CBT-use by capturing it in a biological brain/neural circuit framework; the psychosomatic/bps/CBT movement has for the longest time dismissed and ignored the “bio” in biopsychosocial; now that they are losing ground due to growing acceptance of ME as a biomedical illness instead of a psychosomatic one, they are trying to make the “bio” part work for them.

@Dakota15 I am tagging you because of your recent activities using official canals. I don't know if you are interested in this, but I wanted to notify you.


I am not telling you (edited: tagged people and readers of this post) what to do, but if I was an American citizen and able, then I’d make a FOIA request for everything there is to know about the establishment of the interoception unit at the NINDS Division of Intramural Research, including :

• Meeting minutes, internal communication and other paperwork regarding its establishment
• Meeting minutes, internal communication and other paperwork regarding the appointment of Walitt as its director
• A precise description of what they research and which conditions are housed there (ME/CFS, Long Covid, GWI,... what else?)
• Documentation about its financial funding and the justification of the financial funding; how much budget do they get and from which budget?
• How much FTE are currently involved, how many employees the unit has, which positions they hold, and, if possible, who they are.

 

And finally, for the record (as stated earlier) I do not mind honest, good faith, classic interoception research. I also do not mind alternative practices and wellness activities as support in illness, as long as the practitioners accept it is complementary, supportive and not a main treatment for the primary medical issue. What is happening here though I find deeply reprehensible.

I’m also quite livid with Koroshetz- how can he be so incredibly irresponsible? Medicine and the NIH can wring their hands about womens health and women being disbelieved in the dr’s office, causing medical neglect, diagnosis delay, harm and death, but if they open the door to reducing illness to primarily a matter of “how it feels” which can be influenced by mind-body “interventions”, if they collaborate in framing pain and fatigue and other symptoms to mere behaviour-inducing sensations -and distorted sensations no less that need CBT, mindfulness and whatever they want to set loose on it to “correct” it-, if they open the door to antique disablist mind-over-body beliefs in a glossy new lab coat, then their concern for women’s medical neglect means fuckall, they can start “awareness” initiatives to counter psychologization of womens medical issues for millions of dollars, but it won’t mean shit if they fuel it at the same time.

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.

 

Amazing work @Arvo! This is truly terrible and needs to be investigated further. It needs to come into light that they have it all set up. In other words that they will get the results they want because of their high biases. The ones putting the research money into their hands and the patients groups affected need to hear of this. It’s PACE all over again but even worse because it’s the NIH.

 

Thank you.

My brain is splurting its last outputs in mush mode, but important: This is potentially very severe, but remember that it is still in its infancy (if I'm right, fruitful to nip it in the bud before it gets more established) and that apart from this a lot of good stuff is happening re. ME/CFS. Please don't despair , it's beter to pull it out in the open than if it could go on unquestioned.

Also, these are all puzzle pieces that look extremely bad, yes, but it also needs further investigation and clarification. (In the mean time I do vote a firm NO for any formal ME/CFS or overall post-acute infectious diseases institute at the NIH unless no-one discussed above is involved until this has been cleared up, and unless the NCCIH is firmly kept out of it.).

 

Appreciate alll this important work, @Arvo

In terms of FOIA, someone else may have to undertake that request. Coordinating and collaborating on the current FOIA request that I have open on the NIH intramural study has already been draining (for context there was about 15-20 messages this week with the FOIA rep handling my claim. It’s been a lot).

Hopefully someone else will be willing to help on that part.

 

Thank you.

And yes, I understand. (And I can imagine it's been a lot.)
I'm sorry if it seemed like I was adressing you alone, I meant to address the people I tagged and the people who read the post. (And I included you by tag because I wanted to give you the opportunity to take it along if you could and wanted to.)

Good luck with your current FOIA request, I hope it brings you the insights you need with not too much personal cost.

 

Ok, let’s look at a couple of things.

First of all, Walitt was absolutely very involved in creating the study protocol. It was his job, he conceived and designed the study, and when asked to clarify Walitt’s involvement in the study in November 2016, Nath said:

(Nath was asked as principal investigator by Collins and Koroshetz; Walitt had ample experience as research director and associate director for the Division of Rheumatology at Washington Hospital Center, as director of the Fibromyalgia Evaluation and Research Center (FMeRC) -his own unit for interoceptive disorders at Georgetown University Medical Center, and as Director of Clinical Pain Research for the NCCIH Intramural Laboratory of Clinical Investigations (link (PDF) and link); from several sources I also get the impression he can be very charming and affable as well, so such a colleague is of course great to have when you're actually in over your head. At least in the first year of the study, Nath has leaned heavily on Walitt and feels very grateful towards him for putting the protocol together and organizing the day-to-day study activities.

Spoiler: Full answer which makes clear that Nath has leaned heavily on Walitt and feels very grateful towards him

"And then Dr. Walitt, yes. So Dr. Walitt is a, you know, delightful individual, very experienced. I have full confidence in him. And so he’s doing a superb job putting this protocol together. He has done all the work in helping me.

You know, there’s so much paperwork that has to go in to get these things approved. If I really didn’t have his help, I don’t think I could take this on at all.

And then coordinating day-to-day activities, bringing the patients that need to, you know, blood needs to get drawn at some point in time. And MRIs to be done and something goes wrong. Scanner’s not working, whatever. Things have to be done.

So a lot of day-to-day activities that you really need somebody like Dr. Walitt to really do it. He’s very methodical. He’s very compulsive. He’s very organized. So, you know, those are qualities that are hard to come by.

And so I think he is ideally suited to help me out. I’ve developed a good working relationship with him. And so I think he’ll do a great job. I have no reason to be concerned about him."

This is btw. one week before the Shorter talk. Also note that Nath has no reason to be concerned about him because he himself has a good working relationship with him, which is obviously beside the point.

(After Naths remarks about Walitt, Koroshetz directs the conversation back to the earlier discussed costs of the study. Btw, they also gave what I found a strange opening answer about the costs as well, like they don’t make budget sheets and budget requests for such a project.)

In the same call Koroshetz says about their ME/CFS project “that it’s not top-down. It’s going to be investigators coming in with their best ideas, coming in with a commitment to work together. And to really try and go after what are the most important problems that need to be solved that will enable better treatments for patients.”

Now, correct me if I’m wrong, but I personally was struck by the similarities between the first protocol for the NIH ME/CFS study (captured February 2016 - more comment on this protocol here.) and Walitt’s 2009 fibromyalgia study protocol (see PDF attachment of this post and this post for study protocol context - written in 2008, updated 2009, in 2010 Walitt opened his FMeRC. Also noteworthy: in this February 2016 protocol and in the March 2016 discussion of protocol, EEfRT was not yet part of it.):

First do a round of questionnaires, an fMRI , and blood draw for values. Then have the patients taper off medication before you have them return after a couple of weeks, where you repeat the questionnaires and blood draw and then fMRI them while you induce the researched sensation (pain/fatigue). I understand that repeat visits and tests are the usual way of working, but the reported protocol also matches an earlier work method used to show that fibromyalgia is a problem of subjective perception, explained as "abnormal brain functioning", by fMRI-ing patients while inducing the sensation and then comparing those images with blood works and questionnaire outcomes.

Before his appointment at the ME/CFS intramural study, Walitt was obviously busy trying to prove his psychosomatic theories of fibromyalgia as a somatoform disorder -a disorder of maladaptive behaviour because of catastrophizing and wrong pain perception- with brain imaging and blood tests (looking at cytokines and genes etc.), and right before he was appointed it appears he was officially branching out to do the same for a long-term held similar belief about ME/CFS (replacing a feeling of pain with a feeling of fatigue - see PDF attachment in post, particularly the bit about Walitt's 2016 NCCIH paper about ME/CFS as "central sensitivity syndrome"), and to me it looks strongly like he was allowed to (or possibly even appointed to?) do just that in the ME/CFS intramural study.

Both before and during his joining the NIH (see e.g. link), and in the ME/CFS intramural study, he collaborated with Leorey Saligan, who has similar psychosomatic beliefs about fibromyalgia and chemotherapy-related fatigue in cancer. Together they e.g. published the notorious chemobrain paper that calls fibromyalgia and ME/CFS somatoform illnesses (ergo:hysteria) and one that connected genes to catastrophizing in “fatigued” fibromyalgia patients (the one where they put a lower treshold on the Pain Catastrophizing Scale ).

Saligan is into “biobehavioural mechanisms of fatigue”. He wants “..to understand and identify biobehavioral mechanisms of fatigue to develop more effective ways to manage it.."
As mentioned elsewhere, Saligan is currently also clinical collaborator under NCCIH deputy director David Shurtleff at the NIH pain center - the pain center was initially led by Bushnell and Walitt (when both NCCIH) and Shurtleff gave the opening talk at the first researcher meeting for the NCCIH-led Blueprint interoception initiative in 2022.

As discussed earlier, ME hate speaker Edward Shorter was invited by Walitt to speak to the NIH scientists in the ME/CFS intramural study. Shorter claims that ME/CFS patients are usually “patients with delusional somatization, who simply misinterpret the signals their bodies are sending off”. (btw, from the description of his NIH talk it seems like the is still giving about the same stigmatising and misogynistic talk he’s done for decades, since it sounds very much like the one he gave to the CIBA meeting in 1992, see Osler’s web p 589) .

Walitt spoke after Shorter’s presentation. MEAction reports:

This seems to confirm that at the time Walitt was the lead clinical/associate investigator for the NIH intramural study on ME/CFS, he was still following the view he and Saligan have expressed in the 2015 chemobrain paper, where they also compare ME/CFS to chemobrain (with IMO a weak set of steps). In that paper they try to set aside chemotherapy-related neurological injury as a cause for chemobrain, and try to pose instead that there is no real objective injury but a subjective somatic experience. I’ll put the passage from that paper that I think is a key in understanding where Walitt wants to go with his “effort preference” and claimed significance of the “decreased activity of the right temporal-parietal junction, a part of the brain that is focused on determining mismatch between willed action and resultant movement” in a post below.

This all, combined with what I already knew, for me continues to further strengthen the impression that Walitt from the get go has been continuing his and Saligan’s activities. That he's not honestly trying "to understand exactly what the biology of post-exertional malaise is" like he promised (PEM got left out of the “deep phenotyping” paper -the trans-NIH ME/CFS Working Group tells you that you have to look it up in a Q&A, and it got e.g sidetracked to a paper with a NCCIH lead author that questions patient’s trustworthiness on reporting their own PEM experience. link post), but that he is instead still trying to "understand" the "biology" of his psychosomatic views, of ME/CFS as a somatoform disorder - using fMRI scans and other brain-imaging techniques alongside blood draws and questionnaires to prove that, based on ME as a sensation of fatigue, the core of ME is what Walitt around 2010 dubbed an “interoceptive disorder”: that patients mistakenly perceive something that is not there due to mistakes in the brain (which seems to have been getting a slight makeover recently to make room for some pathology, saying that physical things make patients perceive things which they then have wrong interpretations about which then leads to disability-maintaining behaviour as patients (still!) have a mismatch between what they think they can do and what they can actually do.)

Because of this all I can’t help getting the creeping impression that I’m looking at double-talk when Koroshetz tries to reassure patients that everything is fine because the finds are “biological”; when I reread his reply to @Dakota15 (link) and his talk at the Blueprint interoception meeting, it looks obvious that he goes along with Walitt’s views that patients misinterpret signals from their bodies, that the brain=mind gets it wrong, which in turn creates maladaptive behaviour; that with “biological” he means that the wrong perception and subsequent wrong behaviour are stemming from biological influences. That it's, to borrow Saligan’s term, biobehaviour, also explained by setting the brand new interoception redefinition loose on it: that how patients feel is a brain abnormality, a wrong interpretation, that then leads to doing less than they could actually do.

I'm really glad others are picking the EEfRT and TPJ claims of the Walitt et al "Deep phenotyping..." paper apart.
(And I'm also a bit worried about other ME/CFS researchers underestimating the effect it could have if left unchallenged.)

 

Post #109 add-on: crucial passage from Chemobrain: a critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy - PubMed (nih.gov)

Text:

Spoiler: Key text from paper

"…. it seems likely that the discordance between subjective dyscognition and objective impairment is a defining observation of the nature of chemobrain rather than simply being a measurement artifact…."

"The state of the evidence for chemobrain strongly resembles that which is seen in fibromyalgia and chronic fatigue syndrome......"

"These illnesses also draw support from neuroimaging studies that commonly show alterations in the structure and function of frontal cortical regions that are passingly similar to those documented in chemobrain [45]. Limited evidence of alterations in oxidative stress, neural repair, immunologic, and endocrine changes have also been reported [46]. Both of these illnesses have disputed causal triggers, such as trauma in fibromyalgia and infection in chronic fatigue syndrome, whose validity is also not answered by the scientific literature to date. The clinical and scientific experience of chemobrain is remarkably similar to the dyscognition reported in fibromyalgia and chronic fatigue syndrome. However, no comparative studies between these dyscognitive states have been performed to date. The implications of this observation are that specific chemotherapeutic-related neurologic injury is not required to create the somatic experience of chemobrain.

The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome. A somatoform view of chemobrain would consider it as an atypical yet predictable subjective experience that result from the normal functioning of the brain rather than from an injury. In this way, physiologic factors other than direct neurotoxicity from chemotherapeutic agents are the critical ones in establishing and maintaining chemobrain. Chemotherapy, or the psychological ramifications of cancer treatment, may simply be one of a variety of “triggers” that ultimately lead to dyscognition.

We emphasize that viewing chemobrain as a somatoform illness does not undermine its clinical legitimacy or trivialize the patient suffering that comes with it. All human experiences are psychosomatic ones whose existence is dependent on discoverable physiological mechanisms that are potentially susceptible to therapeutic manipulation. Rather, accepting the possibility that chemobrain is related to that seen in somatoform illness provides a unique opportunity in examining the physiologic underpinnings of these illnesses. Do the biologic alterations that accompany the discrete, medically-induced physiologic stress of chemotherapy “trigger” long-term homeostatic change that is causally responsible for the somatoform experience of chemobrain? The current state of evidence is insufficient to answer this question; the answer would have important ramifications on the causality of all somatoform illness. Here, the authors take the position that such a trigger exists. We hypothesize that acute shifts in cytokines related to chemotherapy administration lead to epigenetic alterations. These epigenetic changes persist after the resolution of the chemotherapy-induced immunologic changes and are primarily responsible for creating and maintaining changes in neuroplasticity that underlie the somatoform experience of chemobrain."

 

Thanks for looking at this so carefully @Arvo. I feel deeply concerned at this NIH study. It never made sense to have Walitt as its coordinator. His views were clearly expressed before the study began, out there for all to see.

 

Just wanted to chime in and say thanks for this extensive investigative work @Arvo, I'm going to cover some of this in my blog, maybe even write a separate post about it.

 

Wonderful. I tried to shove in all the necessary sources, but I wasn't always able. If anything is difficult to find, you're welcome to DM me.

 

Thank you.

I keep trying to let it go (it's not good for me, and it takes up way, way too much energytime), but I keep tripping over things that I think matter too much to leave unmentioned.

I wish I was able to organize the information in all my posts in this thread for better accessibility, but that would take a lot of time and effort that I don't have to give (this is already asking too much and I really need to do less and other things).

It's still a collection of puzzle pieces (I have e.g. not watched the 2013 NIH pain lecture by Walitt or read every set of minutes from the NCCIH council), but the picture that emerges about the context of this study does indeed look bad, and there are many questions that I think NIH should answer.
I started looking around for context a bit because the "effort preference" sauce that was all over the study paper, and the post-publication explanations for it, were weird, clunky and non-sequitury, and there were some disturbing signs that in combination gave the impression this study was more a tool to (further) establish an "evidence-based" psychosomatic view than an honest observation and derived conclusion on ME/CFS (like the study linguistically drawing the same conclusions as a Knoop & Van der Meer CBT promotion study, and Nath recently speaking at a Finnish BPS Long Covid symposium alongside Sharpe en Garner). And so far what I found only strengthened that initial impression.

At this point I consider the study a Trojan horse. And I don't like saying that at all, because I'm still assuming that there have been scientists who worked hard on this with honest and good intentions. But that's actually also a thing that worries me: 75 authors collaborated on this, why did they all aree to get figure-10ed? Do all these NIH scientists agree with having their finds incorporated into Walitt’s beliefs and Koroshetz’ & co.'s brand new interoception redefinition? Have they not been paying attention and/or think it is harmless? Or do they not agree, but do they feel unable to protest it or walk away from it (or tell themselves it will be ok) due to power inbalances like financial dependency (funding, career), and/or the NINDS Director, the two study leads and possibly the ex-Director of the NIH very much wanting this?
(This also matters greatly for the possible establishment of an office of infection-related chronic diseases at NIH.)

Indeed it never made sense to hire Walitt for a top quality ME/CFS study, and in such a prominent position as well.

There is still much to be explained on why Walitt got appointed and was allowed to continue his activities, like e.g. if they appointed Walitt because they already agreed with his beliefs and deliberately wanted to make Walitt's efforts to biologically confirm psychosomatics and "central sensitivity disorder" in ME/CFS a part of this study, or if e.g. they appointed Walitt for this intramural study project out of scarcity because the NIH is a mess ME/CFS-wise and Walitt has a lot of experience running clinics in an intramural setting and claims to be experienced in ME/CFS as well -a one-eyed king in the land of the blind- after which he was able to insert his desired course because Nath was very much in over his head and grateful for Walitt's experienced help and Walitt got to influence Koroshetz, who (as well as Collins) was buddies with Walitt's old NCCIH colleagues, which then led to Koroshetz' cooperation in setting up the NCCIH-led Blueprint for Interoception initiative and the establishment of the "interoceptive disorders" unit at the NCCIH.
I could not tell you if it was one of these ways or another, but the end result is pants and a potential blight on good ME/CFS science either way.


ps: sorry, I know I'm wordy but I can't condense.

 

I also realise (and see) that this info makes people upset and despaired. I'm so, so sorry if that happens. (I know it's not my "fault" but I do feel guilty because I'm the one posting this stuff here.) A big, warm to everyone who can use it. This stuff sucks so, so much, and I know I haven't really addressed that.

My purpose for posting it here is to give people understanding, and handholds in information and source material, because you can't fix a problem if you don't know it. The key thing that should happen is still to analyse the study claims about effort preference and the TPJ, but I think that providing the context of it might help people to criticise (and understand) it even a bit better.

My purpose is not to make you feel disempowered, but actually empowered when criticising and asking for accountability, because you are better able to point out problematic issues.

 

I feel better Arvo the more you explain it and I understand the full picture. But then I am not in the USA.

Thank you.

Could it be possible that Walitt was appointed because he was one of the few people interested in taking this on and at the same time considered a safe pair of hands? Once the study was promised it became a task to be completed and it didn't have to be done well or thoroughly or in good faith. The vacumn in their experience and an unwillingness to admit this left room for someone like him to use this as a vehicle for their own means.

 

Thanks @Arvo. Understanding what happened is crucial so please don't blame yourself for anything in any way.

I found this in your post #109 interesting, located in spoiler. From Nath

It sounds as if the study wouldn't have gone ahead without Walitt's taking over its running, and also that much of that work was administrative, not scientific. His pleasant demeanour counted for a lot- I think ( from memory) that Jeanette Burmeister also mentioned this in one of her blogs. i wonder what Nath was referring to when he said " I have no reason to be concerned about him". Had somebody raised a concern? There were plenty of red flags.

But as @ukxmrv says, it was convenient to have somebody ready and willing to take this work on.

 

That is good to hear, thank you.

It is possible, but essentially I can't tell you the motivations for hiring Walitt atm. To get a better understanding of that I think you'd need to collect contemporary remarks made around the time of his appointment and look at FOIA-requested internal communication and documentation regarding his appointment (emails, minutes, letters, applications etc.). There could very well be American ME advocates who have a better idea of it because they followed it closely at the time.

 

What's the difference?