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

I've watched a couple of the NIH NINDS ME/CFS Research Roadmap videos and I am struggling to reconcile that they come out of the same organisation as the intramural study. I realise much of the content is from people who are external to the NIH but none of what I have seen so far shows there is any realistic position within the roadmap (if it progresses into actual NIH funded studies) for the likes of Brian Walitt & the BPS model. There is such a disconnect and I feel I am missing something. Can someone explain how this plays out?

 

Maybe there are two streams/factions?

I can not explain it, but this is not the first time it seems like there are two movement/currents within this project. Maybe it's a matter of who is involved, down to the person? Or an organizational difference between the intramural group and the extramural one?

I understand that Vicky Whittemore is the one within the NIH who put this show on the road. (See e.g. link ) I don't know her, but the impression I get from others is that she is driven and has wants to get this right.

When the invitation of Shorter to talk was protested, Cort Johnson said:
"I wouldn't be surprised, to tell you the truth if Koroshetz and Vicky Whittemore had no idea this was coming down the pike. The Intramural program seems to be doing their thing and Vicky is doing hers. She would never condone this."

Also, when I look at the members of the NINDS ME/CFS Research Roadmap Working Group of Council (sceenshot below) it has zero overlap with the NIH people who I consider a risk of pulling ME/CFS into a narrative of being an interoception disorder.

It is encouraging that there are people at the NIH (chiefly Whittemore) who want to treat ME/CFS like it should be, but it is indeed confusing and not ok that engaging with the NIH can feel like a coin flip. If Whittemore's intention is not that of the whole project, that is a problem. (E.g. because there are questions regarding power balance -Whittemore appeared powerless and overruled at some pretty pivotal moments- and also because it can camouflage NIH malfunctioning to the community.)

 

Yes, this. The end result is the same, and while indeed it does matter on some points, it doesn't matter in concluding that up to today a series of wrong actions were taken; as a whole the NIH appears unwilling and incapable of treating ME/CFS patients with respect and doing proper ME/CFS research, the intramural research project, the Trans-NIH ME/CFS Working Group and the NINDS certainly didn't imo.

And this wasn't even "not playing nice", this was calling for a bare minimum of not inviting a known medical misogynist and ME hate speaker as information source . That's not even a low bar, that's a groove in the floor that anyone should be able to slide over shuffling FFS. But Koroshetz can't.

Much like when Nath got abusive when he got questioned over appointing a guy who doesn't believe ME/CFS is a biomedical illness but a mistaken sensation (he literally compares ME/CFS to phantom pain), both defended unmistakeable harmful, even hateful, prejudice towards patients when it should not be part of their project anywhere. They truly don't see the issue, and/or not getting criticised matters more to them than removing prejudiced influences. Which makes them unsafe for the patient population and unfit for being part of this project.

I'm angy at Koroshetz for his irresponsibility of facilitating and supporting the NCCIH-led interoception project, because it shows zero awareness of (or care for) what happens to particularly women in the dr's office - the interoception project has the potential to entrench that bad situation even further. For me the fact that the man doesn't even recogize and/or stand up against vile expressions of medical misogyny creates the notion of an pattern of a powerful older man who can't or won't understand that women are routinely disbelieved in medicine when reporting their symptoms, that they are commonly treated with harmful prejudice and have their symptoms dismissed as stemming from stress, overreaction, attention seeking, emotionality and irrationality, and that this is actually a very bad thing.
(Plus I believe the SolveME representatives were women, as is Whittemore, so calling their objections "making a fuss" again gives the impression of a patronising man oblivious to sexism in himself or his surroundings.)

(edited to add an "and" so I sounded less stern/combative)

 

I don't know if Walitt does these things on purpose or not. I'm willing to believe that Koroshetz and Nath thought they were giving us what we needed, despite the blowback against the Shorter stuff and the appointment of Walitt. As you say I think it's very hard to backtrack once you've wasted millions of dollars on something. Might be the end of the career for some.

*edit* fixed a sentence that made no sense.

 

I'd be less furious if I thought that was a possibility! All too often people like this actually fail upwards.

It's fine for scientists to be wrong, and it's not surprising if some of them try to present negative or inconclusive findings in the best light they can. But this is so much more devious and insidious than that.

 

There is the public version. And there is the private version.

If you read what's published about psychosomatic medicine, it all sounds and looks so benevolent and good. If you can read or hear what they privately think of the patients, it reveals why it's none of those things and will never accomplish anything good. But of course they can't come out and say what they think, the literature has for decades been focused on how to better lie and deceive because they can't imagine that there is anything wrong with the substance and they just want to perpetuate the same nonsense without sounding offensive.

Simon Wessely managed to cultivate an image where he has always wanted to help us. He never did such a thing, because the public version has nothing to do with the private one. Being openly wrong always requires some finesse. Tobacco companies never wanted to kill hundreds of millions either. They just wanted to sell as many cigarettes as they could. In private there is clear acknowledgement that they are one and the same, but the public version will never say the quiet part loud.

 

The tripping-over-NCCIH-staff keeps on going.
(Some names bolded for clarity, in the hope that it's easier to follow that way.)

It appears that NCCIH staffer Nicholas (Nick) Madian has been closely involved in administering EEfRT.

For the "Deep phenotyping" paper, Madian "recruited participants and collected clinical data, research data, and samples”, "arranged and prepared samples and/or data for analysis", "performed statistical analyses", and "drafted the manuscript", which now seems highly likely to have been regarding (at least) EEfRT.

He got to present the "effort preference" section at the May 2024 NIH ME/CFS Symposium, and was the one (badly) answering questions regarding EEfRT. He also said:

In 2010 Madian was affiliated with the Neurobiology and Pain Therapeutics Section at the Laboratory of Sensory Biology, National Institute of Dental and Craniofacial Research, NIH, Bethesda, MD, USA (I reckon still as a student?)

Around 2017/2018 he was getting his PhD in Clinical Psychology at Palo Alto University. (Palo Alto University is “a private university in Palo Alto, California that focuses on psychology and counselling”) At the time he was affiliated with
the Department of Psychiatry and Behavioral Sciences of the University of New Mexico (Albuquerque) and the Department of Psychology of Palo Alto University.

His article 'Repetitive Negative Thought and Executive Dysfunction: An Interactive Pathway to Emotional Distress', published in 2018/2019 in Cognitive Therapy and Research "was submitted in partial fulfillment of dissertation requirements at Palo Alto University for Nicholas Madian.”

On an old researchgate page (where Madian is still affiliated with Palo Alto University) his listed skills and expertise are: "Cognitive Neuroscience, Executive Function, Cognitive Neuropsychology, Neuropsychological Assessment, Clinical Neuropsychology, Affective Neuroscience, Experimental Neuropsychology, Neuropsychological Rehabilitation, Cognitive Rehabilitation." (Edited to add)



After getting his PhD in clinical psychology, he seems to have been appointed by M. Catherine Bushnell at the NCCIH to do postdoctoral work there. Since at least 2019 he has been employed at the NCCIH. In 2019 Brian Walitt was Acting Clinical Director of the NCCIH's Division of Intramural Research alongside scientific director Bushnell, and he was Acting Chief of its Clinical Investigations Branch, overseeing Lauren Atlas. Bushnell led the other branch, overseeing Alexander Chesler. See organization chart here.

(Bushnell is discussed several times in this thread, eg here; She was Walitt's boss and colleague at the NCCIH's Division of Intramural Research and together they were director of the new pain center the NCCIH initiated. Bushnell got succeeded by David Shurtleff, currently deputy director of the NCCIH, as director of the NCCIH intramural program and the pain center.)

2021 saw three articles (1 unpublished) by Madian with his NCCIH colleagues.

• Innocuous pressure sensation requires A-type afferents but not functional ΡΙΕΖΟ2 channels in humans - PMC (nih.gov) (received January 2019) It's about pressure sensation (incl: interoceptive signals, interoception) Madian is one of a bunch of NCCIH authors (including Frangos), corresponding authors: M. Catherine Bushnell and Alexander T. Chesler.

• Non-pharmacological Treatment of Pain: Grand Challenge and Future Opportunities - PubMed (nih.gov) NCCIH article by three authors, Bushnell, Frangos and Madian.

This editorial appeared as “specialty grand challenge” article in the journal Frontiers in Pain Research. It discusses the challenges in showing the efficacy and mechanisms of alternative and “mind-body interventions” like meditation, yoga, CBT, acupuncture, music therapy, tai chi, and exercise. (It has a section on “Development of Novel Imaging Methodologies Allowing Studies of Brain Mechanisms in Humans and Behaving Rodents” )

Catherine Bushnell herself is the Specialty Chief Editor on Non-Pharmalogical Treatment of Pain at the journal. The article says that "the subject content of Non-pharmacological Treatment of Pain (SCE Catherine Bushnell) intersects with that of the Neuromodulation specialty (SCE Julia Pilitzis). Further, it can be appreciated that a non-pharmacological intervention that focuses on a musculoskeletal or neuropathic pain phenotype will have subject matter that intertwines with the treatment modality or mechanism.” It says : “It is my [sic] aim as the SCE of Non-pharmacological Treatment of Pain to seek integration of topical subject matter and in that manner provide the strongest linkages across the pain specialties."

Additional:

Spoiler: An opening section I found relevant

Challenges in Terminology
Before addressing other challenges related to non-pharmacological treatments of pain, we must first address the negative connotations of words surrounding many of these methods. When referring to pain treatments that do not involve the use of conventional drugs or surgery, the term “alternative” is often used. If the non-pharmacological treatment is used in conjunction with a drug treatment, such as having a patient exercise, in addition to taking anti-inflammatories for osteoarthritis, the use of exercise can be described as “complementary.” Historically, these terms were used to describe practices which aimed to achieve healing effects, but that lacked biological plausibility and were untested or untestable (1). As such, the terms took on a pejorative meaning to describe methods that had little or no scientific support. Nevertheless, there is a huge difference between untested and untestable, so in 1999, the US Congress created the National Center for Complementary and Alternative Medicine, with the mission to define, through rigorous scientific investigation, the usefulness and safety of complementary and integrative interventions and their roles in improving health and health care. Now, with the opioid crisis, there is an accelerated push around the world to understand the efficacy and safety of non-drug pain treatments, as well as to identify the mechanisms of their effectiveness. However, in order to gain an understanding of efficacy and mechanisms of non-pharmacological pain treatments, we need to first step beyond the idea that anything described as alternative or complementary cannot be evaluated using the scientific method (2). Since the biological basis of a treatment may not always be immediately apparent, we first need well-controlled clinical trials to clearly demonstrate efficacy beyond the placebo effect, and then we need mechanistic studies to identify the biological basis of the effect.

(It illustrates again the NCCIH's attempts to mainstream and normalize complementary practises as medical treatment, and that Madian is involved in that, plus it shows again the route that is used: because the opioid crisis there is an urgent need to provide an alternative to pain killers, and the NCCIH jumped into that gap, that has been their way "in".)​

• The unpublished Do we really understand the role of the prefrontal cortex in placebo analgesia? | bioRxiv, which has Nicholas Madian as lead author alongside Eleni Frangos, includes Binquan Wang as co-author (the MRI data analyst who worked with Bushnell and Walitt at the Clinical Investigations Branch of the NCCIH when Walitt was studying "interoceptive disorders" there, see also here), and has M. Catherine Bushnell and Marta Ceko in key author positions.(We met Ceko earlier, see here and here - she was among other things Walitt's co-author in the 2016 "Neuroimaging of Central Sensitivity Syndromes" that poses that ME is a "central sensitivity syndrome" characterized by "alterations in central nervous system structure and function [that] lead to an amplification of sensory signaling from which somatoform disorders develop".)

They were fMRI-ing participants to look at “expectation-based placebo analgesia”.​

In 2022 Nicholas Madian was present at a 2 day NCCIH symposium on "the current state and future directions of the intramural pain research program and to highlight current collaborations and discuss future research within the Pain Research Center (PRC)".
Tackling Pain at the National Institutes of Health: Updates From the Bench, the Clinic, and the New NIH Pain Research Center | NCCIH (Remember this program was started with the appointment of Bushnell).
Madian got to moderate an afternoon session. The familiar names were were doing the presentations, like Langevin, Shurtleff, Atlas, Nahin (Stussman's longtime collaborator in NCCIH complementary medicine surveys), Chesler, Saligan, Frangos and more.

Nicholas Madian is reported on the event page as "Postdoctoral Fellow, Pain and Integrative Neuroscience Branch, Pain Research Center, National Center for Complementary and Integrative Health."
(NCCIH Organization Chart 2022)
From 2019-August 2020 Brian Walitt was Acting Clinical Director of the NCCIH Intramural Research Division this P&IN branch was part of, plus he was co-leading the pain research center. It appears Madian has been working subsequently under Bushnell (previous) and Shurtleff (current), and under Walitt (previous and current). (See also here)

A reminder that the NCCIH is busy setting up and expanding their interoception project which has to function as a way to justify mind-body interventions; Shurtleff as deputy director of the NCCIH is deeply involved and enthousiastic about that. At the openig of the first investigator meeting, he said it is "Truly an exciting area for NCCIH for sure over these many years, but certainly, interoceptive processes and dysregulated interoceptive processes in particular, are associated with many health conditions, including..... somatic symptom disorders, and of course others...........In addition, at a fundamental level, there is interest at NIH, to study the understanding, the basic mechanisms of interoception, that could lead to improved disease models and improve treatment strategies for many of the health conditions that I just mentioned." (After which he gave the word back to
Trans-NIH ME/CFS working group member Dana Greene-Schloesser, one of the key organizers of the project.)
See here.

Nicholas Madian has also been connected to the NIH's Pain Research Center, which is initiated and staffed by the NCCIH.
It was set up by M. Catherine Bushnell under NCCIH director Helen Langevin in 2019/2020, and she initially led it together with Brian Walitt and Lauren Atlas.


The current staff page of the Pain Research Center says:

And it includes familiar names such as Shurtleff (director), Wang (Bushnell and Walitt's fMRI staffer, who also collaborated with Madian), Atlas (NCCIH intramural division under Bushnell, colleague to Walitt, and co-leading the pain center with Walitt and Bushnell after it was first established), Leorey Saligan and Eleni Frangos.

In 2022 Nicholas Madian is mentioned on the pain research center page as a postdoctoral fellow/intramural research training award fellow at the pain research center (also here) - I have no prior archivation of this page, it would be interesting to know if he started this in 2019/2020, when Walitt was leading the pain center with Bushnell and Atlas. Between December 2023 and January 2024 Madian's status is changed to "alumni".

 

Thank you for the detail in your post @Arvo.
A record seems necessary.

 

I still can't believe that the alternative medicine industry hasn't yet jumped enthusiastically on this. They can literally keep everything else the same, simply swap a few terms and voilà, they're now cutting edge behavioral treatment techniques harnessing the power of the placebo, the magical healing powers of the mind over the brain and body; not dualists. They can even start using "recommended by the NIH, NHS and other legitimate institutions", and there's nothing those institutions can do to counter it. They really do promote the same stuff using the same language and with the same intents and purposes.

That last sentence is amazing. It's still entirely the case, none of this stuff is biologically plausible and none of it is testable in a scientific process. But when you try to mix science and woo, all you get is as a result is worse science, not better woo. It's all whitewashed by removing the need to provide any evidence, and to simply rely on the expert fallacy, with a huge heaping of the motte and bailey fallacy (it's a cure for everyone, well OK it "may be of help to some" and not a cure, but it's definitely a cure for anyone, if you have the motivation). It's quackery, same as always, but it's now promoted by licensed MDs and legitimate institutions, giving it the power of Law. Everything else is the same, but now they have erased the line between science and quackery, have effectively nullified the only thing that makes them credible.

To think that this is supposed to be in response to the opioid crisis makes it even worse. There is a desperate need for a better solution, and all they can think of is the worst possible solution imaginable. So many people will kill themselves as a direct result of this, and the whole thing is built precisely in a way that makes it impossible to link it back. We are truly in the age of Truthiness, even medicine has thoroughly fallen to it.

 

Brian Wallit speaking at the 2024 Invest in ME Research Conference. Photo by Janet Dafoe

https://twitter.com/user/status/1806609658489995461

 

https://twitter.com/user/status/1806854397126979658




Tweet:
"Dr Walitt and Dr. Nath defended their unsupported “effort preference” theory to other attendees at the 2024 Invest in ME #IIME24 conference in London, saying that #pwME misunderstand and need to get over it. They believe their understanding of M.E. is superior. #ThisIsNIH"

.

 

You can fool some of the people all of the time, but not all of the people with ME/CFS all of the time - in fact hardly ever.

Walitt seems to be majoring on petulance.

 

When it comes to Nath, I'm still not sure whether it's arrogance or Stockholm syndrome.

It seems rather clearer with Walitt.

 

I wonder if Nath is/was hen pecked i.e. by Walitt? Either way, Nath should have held the line that the evidence wasn't there to support the claims made in the paper!

 

Am curious why Walitt has been invited to speak at a conference that I think has a much higher standard than would be expected based on the study he is presumably there presenting/defending.

Obviously, freedom of speech and all that, but, putting him on the same bill as Ron Davis?

(I think that makes sense - someone take over my brain and help..please..)

 

Janet Dafoe mentioned on twitter she had a long talk with him.