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

[Arvo]

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":

Interoception refers to the representation of the internal world of an organism and includes the processes by which the organism senses, interprets, integrates, and regulates signals from within itself. ........ 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.

(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.")

 

[Jonathan Edwards]

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.

 

[Arvo]

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.)

 

[Jonathan Edwards]

NIH VideoCast - Demystifying Medicine 2013 - Pain: How It Happens and What Can Be Done?

Not a recommended watch of course,

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.

 

[Arvo]

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.

"Now, our second speaker Catherine Bushnell, who was recently appointed to direct a new state of the art program here, which is the focus of the NCCIH's intramural research -that's the alternative medicine branch- and this research is focused on perceiving, on the brain's role in perceiving, modifying and managing pain. So Catherine is the coordinator as well as the primary investigator in this. She received her PhD in experimental psychology from American University and was professor of anesthesia and dentistry at ...[McGill?]... And her work has been in bridging.. particularly imaging technology into major questions dealing to with these issues of pain. Pathways, communication. How does it happen, how do we deal with it. And without understanding the neurobiology of pain, therapeutically one is to have considerably spent sort of shooting in the dark with just dealing with symptoms in the same way you might treat fever with aspirin or tylenol without knowing you had pneumonia."

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.

Brian Walitt, M.D., M.P.H., has joined NCCIH as Acting Clinical Director for our Intramural Research Program. Dr. Walitt brings a wealth of experience to the NCCIH intramural team. He is internationally known for his clinical and research work with fibromyalgia patients, and is the lead associate investigator on the NIH Myalgic Encephalitis/Chronic Fatigue Syndrome protocol.

(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.

 

[Arvo]

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.

"Dr. Brian Walitt has been appointed Acting Clinical Director of DIR." (NCCIH's Division of Intramural Research)

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

"conducts basic, clinical, and translational research focusing on the role of the brain in perceiving, modifying, and managing pain, with an emphasis on mechanistic studies. The Division is an integrated basic and clinical research team that uses state-of-the-art research tools and resources and collaborates with other NIH intramural neuroscience, imaging, and mental and behavioral health research programs."

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:

NCCIH is the lead agency on the pain center being developed at NIH. The project is in a holding pattern until a full-time DIR Clinical Director is hired. In the interim, Drs. Bushnell, Walitt, and Atlas are coleading the project. The mission is to create a pain phenotyping platform within the NIH Clinical Center to better understand mechanisms of diverse pain states and to recommend personalized therapies to prevent the development of chronic pain and opioid abuse. At present, resources include common methodological approaches that staff can use in their studies and in NIH intramural collaborations, such as quantitative sensory and autonomic testing units; anatomical and functional magnetic resonance imaging (MRI) and combined positron emission tomography/MRI; core questionnaires; funding for a fellow; and genetic sequencing. NCCIH, the National Heart, Lung, and Blood Institute, and the National Institute of Nursing Research have provided the resources.
...
The program’s studies include a phenotyping protocol,...

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)

"...described the NIH intramural community as very collaborative and the movement toward the pain center as a grassroots effort. Dr. Langevin said that integrative health is playing a leadership role in pain both intramurally and extramurally and that people are looking to NCCIH for leadership -a situation that has changed a great deal over the past 10 years and of which NCCIH should be proud."

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.

"The Division of Intramural Research (DIR) is undergoing a leadership transition. Dr. David Shurtleff is now acting scientific director—as well as acting chief of two branches—concurrent with his position as the Center’s deputy director. Dr. Catherine Bushnell has stepped down as scientific director and will work full-time for the next year on (1) directing and supporting the new NIH Pain Research Center, where she will also be a senior investigator, and (2) transition-related work in preparation for her retirement."

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.

 

[bobbler]

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 an Acting Directorship 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. 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,

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)

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

 

[Arvo]

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:

“In addition to his work at NCCIH, he also serves as the Medical Officer for both the National Institute of Nursing Research (NINR) and the National Institute of Dental and Craniofacial Research (NIDCR). He is also the Lead Associate Investigator on the National Institute of Neurological Diseases and Stroke (NINDS) Myalgic Encephalomyelitis/Chronic Fatigue Syndrome at NIH protocol. Dr. Walitt collaborates with other scientists at these institutes to better understand the biological mechanisms for a wide array of symptoms, including their effects on patients and how patients respond to interventions. Increasing scientific understanding of the nature of symptoms will provide affected individuals and their families with more clarity about their symptoms and potentially translate into meaningful interventions

.

 

[Arvo]

Part 1/2

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 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:

The NIH need to be grilled hard over why they chose this guy. It is impossible for them to argue they did not know his pre-existing views.

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)

“The experience of fibromyalgia is very much real to the people who have it. The way that we think and feel is based in electricity and biochemistry of our brains. And we don’t really understand how the physicality of that chemistry becomes our thoughts and feelings. And in people with fibromyalgia they clearly feel these ways, and there’s probably a [sic] underlying biology to it, but the idea that that’s an abnormal biology, um, is less clear. The idea that the way that we think and feel should be affected by the goings and comings of our lives and the difficulties we have, um, is something that seems, uh, self-evident, but also’s something that we, uh, like to pretend isn’t true. We’d love it if we could reduce all of these things to a simple pathway. You know science, um, has had all its greatest successes in reducing problems to a single pathway, a single place. And all the, you know, if you take diabetes, understanding the key role of insulin in diabetes. Once that was understood, it transformed the whole illness, and allowed for people to become better.”

…

“The problem with things like fibromyalgia and other, uh, disorders that are of the the neurologic systems of the brain, is that the brain seems to have a dual existence. It exists both as a biological construct but it also exists as sort of a psychological construct. And we don’t really understand how the two go together yet. (Smiles) How they play together, how they sing together, how they work together. And so our attempts to alter the biology without understanding the emotional overlay, um, probably leads to a lot of failure. Alright, there are, it it speaks to our lack of understanding how it really works.”

…

“…fibromyalgia appears to be a way that people experience suffering in their body. Um, both from the way that the bodies are interpreted and the problems of the body, as well as the problems in their lives, as well as how societies tell us how to experience things. All those come together to create a unique experience in different points in time, and right now, that experience, um, is a, one of those experiences is fibromyalgia. Ah. Is it a disease? Or is it a, uh, a normal way that we handle and are supposed to work is still to be determined. But it’s quite possible that the (frowns) tricky way that the brain works, is that we may create symptoms as part of how we’re supposed to operate, as opposed to this representing the system breaking down.”

Continued in next post.....

 

[Arvo]

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:

“The scientific underpinnings of these disorders, as well as the mechanisms responsible for their similarities and differences, are not currently known. One prominent idea is that of “central sensitization”, which posits that alterations in central nervous system structure and function lead to an amplification of sensory signaling from which somatoform disorders develop. Such neurologic changes are not currently measurable at the clinical level, perhaps contributing to the clinical “invisibility” of these disorders. However, the proliferation of modern neuroimaging techniques makes it possible to investigate various aspects of the central nervous system and their relationship to these postulated “central sensitivity syndromes”. Here, we review the full array of neuroimaging testing and how these tests have been applied to five different clinical disorders: fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, temporomandibular joint disorder, and vulvodynia syndrome....The neuroimaging methods we have reviewed inform much about mechanisms and potentially can aid clinical diagnosis and treatment..”

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

"The development of evoked fatigue paradigms that can be performed in the neuroimaging environment is very challenging. An initial attempt (n=12) employed guided visual imagery to elicit fatigue [125]. The authors report that CFS patients found the images more fatiguing than controls, although the measure did not estimate the magnitude of the effect. The task correlated with increased BOLD activity in the OPC, PCC, dorsal MPFC, PHC and decreased activity in DLPFC and dorsal MPFC. A reverse-pattern of activations was noted during guided visual imagery to elicit anxiety.

It is very difficult to interpret these findings. “Fatigue-responsive networks” have yet to be discovered, if they exist at all. Much more study appears to be required."

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:

"Fatigue is the central symptom of CFS and yet very little research has been devoted to it. Previous research in CFS emphasizes the role of the central nervous system in the subjective perception of fatigue (Kent-Braun et al. 1993; Georgiades et al. 2003). This is not surprising considering the effect that factors such as emotion, attention and motivation can have on fatigue perception (St Clair Gibson et al. 2003). Like chronic pain sufferers, CFS patients have been shown to avoid physical activities (van der Werf et al. 2000) and to score highly on the Tampa Scale of Kinesiophobia, or phobia of physical movement and activity (Silver et al. 2002)."

It also says:

The results seem to suggest that the provocation of fatigue in patients with CFS is associated with activation in brain regions implicated in emotion processing and the retrieval of emotional memories. This is consistent with the cognitive-behavioural model of CSF, which proposes that fear and avoidance are key maintaining factors for the disorder (Chalder et al. 2000). It could be argued that patients remember feeling severely fatigued in the past and that they are anxious about feeling so fatigued again. It is the fear of feeling fatigue that can lead them to avoid activity.

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

"These results do not support our initial hypothesis that CFS patients would show exaggerated neural responses in brain areas previously associated with pain perception and conscious interoception (i.e. anterior cingulate, insula and somatosensory cortex). In fact, the reverse was true; controls showed greater activations than CFS patients in these regions. The reasons for this are unclear but it could be speculated that during the imaginal fatigue condition, the patients’ attentional resources are primarily allocated to the highly salient stimuli at the expense of a conscious processing of interoceptive information (Critchley, 2004). It is also plausible that this may lead to CFS patients misinterpreting anxiety or stress as fatigue or the failure to recognize that the fatigue is a symptom of the underlying anxiety/stress response. This misinterpretation could be related to difficulties in identifying and/or accepting emotions (Creswell & Chalder, 2001)"

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?

 

[Sean]

He certainly didn't appoint himself.

 

[Trish]

Lucky, lucky man. Who let him?

And were the participants who put their health on the line to take part in a pretty gruelling study told in advance that this was Walitt's intention?

 

[Kitty]

And were the participants who put their health on the line to take part in a pretty gruelling study told in advance that this was Walitt's intention?

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.

 

[Dakota15]

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’

 

[Arvo]

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.

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.)

 

[Dakota15]

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;

 

[Sean]

Selective choice of evidence, and selective interpretations of evidence, coupled with failure to properly account for the rest of the evidence and plausible alternative interpretations, are very close to scientific fraud. So close that it is often difficult to draw a clear line between them.

 

[Arvo]

Selective choice of evidence, and selective interpretations of evidence, coupled with failure to properly account for the rest of the evidence and plausible alternative interpretations, are very close to scientific fraud. So close that it is often difficult to draw a clear line between them.

"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.)

 

[Sean]

Also, even if going this way, don't you think it's also too soon to be taking such steps?

Yes, I agree this is a last resort, and fraught with risks, and that there are other avenues to explore first.

But I still think it is very close to it. The only element that cannot be demonstrated is, unfortunately, the critical one in such charges: intent. That we can only infer.

I would like to hear from all the other authors of this paper on this matter. Do they fully support Wallit's novel interpretation? Or are there some issues with it that they are not so keen on, indeed, even reject outright?

 

[Arvo]

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:

Fibromyalgia Volunteers Needed

Ongoing research study looking at the how fibromyalgia
symptoms affect the function of the brain.

We are seeking female volunteers of ages 18-65 that are:
• Willing to stop all fibromyalgia medications
• Willing to undertake 6 weeks of specialized physical therapy
• Willing to undergo a series of MRI scans
Study length: 4 study visits over approximately 16 weeks.

There is no cost to participate, all testing and physical
therapy are free of charge, and participants are financially
compensated.

For more information call Dr. Brian Walitt at [phone number]
or email [Walitt's hotmail email]

The 2011 volunteer ad ran:

Pain-Free Healthy Volunteers Needed

Ongoing research study looking at how exercise therapy
affects the function of the brain.

We are seeking female volunteers of ages 18-65 that:
• Do not have any painful disorders
• Are willing to undertake 6 weeks of specialized
physical therapy
• Are willing to undergo a series of MRI scans
Study length: 3 study visits over approximately 12 weeks.

There is no cost to participate, all testing and physical
therapy are free of charge, and participants are financially
compensated.

For more information call Dr. Brian Walitt at [phone number]
or email [Walitt's hotmail]

The October 2012 ads ran:

Pain-Free Healthy Volunteers Needed

Ongoing research study looking at how exercise therapy
affects the function of the brain.

We are seeking female volunteers of ages 30-60 that:
• Do not have any painful disorders
• Are not taking medications tor pain, depression, or anxiety
• Are willing to undergo a single MRI scan
• Are willing not to participate in regular exercise for 6 weeks
Study length: 1 study visit

There is no cost to participate, all testing is free of charge, and
participants are financially compensated. This research study is
being performed at Georgetown University Hospital.

For more information call Dr. Brian Walitt at
[number] or email [Walitt's hotmail]

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).