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

In 1971, my friend asked me to go with her to see the deputy head. She was the only black pupil in some of our tutor groups, and wanted to complain about almost daily racism from other pupils.

His response was: "Well of course what X said was wrong, but you know, if you complain about every little comment you hear, you'll just be labelled a troublemaker."

It hasn't aged well, has it. Nor will some of the attitudes we've seen here.

 

I couldn't reply any more yesterday, but your example connects to an answer I wanted to give.

ME patients are not alone in this, it's an old trick to maintain the status quo and not make things uncomfortable for the people who should deal with this in themselves or others.

Black people, women, muslims and ME patients - they are not allowed anger as an emotion by the people who treat them badly and/or exploit them. It protects the person in the power position doing the bad treating/exploiting from having to change their ways (which works for them) or deal with any uncomfortable reflection that they might not wholly be the Good Person they would like to think they are if they keep on doing what they're doing.

And indeed, if a person from one of these -or a combination of these- groups, says something about being maltreated, it is very quickly framed as complaining too much, as being "difficult", as being too nitpicky/spoiled, as being emotional (and therefore irrational), by the person who doesn't have lived experience as part of that group, but who does have to take action that they don't feel like doing if they take it seriously. Tone policing falls in the same category.

They're all tactics to justify not having to listen to what is said in order to prevent having to act on it.

I'm sorry to hear that that happened to your friend, it's horrible. To be treated in a harm- and hurtful way, and to then have that dismissed in a way that diminishes you as a person even further.

 

Thanks @Arvo for your relentless work on this. When you put your teeth into something you really shred it to pieces, just by facts. Offended by it here on s4me, no way! Maybe Walitt, Shorter and others will be, but they deserve it.

The quote you gave from Nath above can also be explained in another way. "Don't mention my name" and "I don't want anything to do with that" can also point to fear of peers.

The NIH didn't take ME/CFS serious, meager fundings, bread crumbs. All doctors generalists and specialists have been taught for decennia that it's all 'between the ears'. Inviting Shorter was no accident, most probably agreed with his rants. And putting your name on a ME/CFS-research-list is not done, there is nothing to research. The way they have always talked about ME/CFS and us the patients, amongst themselves, has been very negative, if not worse.

When I was at the practice of drs van Campen/Visser I told them that when I even mentioned ME/CFS to a specialist, I wasn't taken serious anymore.
Prof. Visser replied: 'That's what they do to us too'. I asked: 'Because you are researching ME/CFS?'. He said: 'Yes'. I could only shake my grey head.
Cardiologists with an excellent reputation untill they started researching ME/CFS. They were shunned and frowned upon by other specialists.

My opinion:
Giving Walit so much leeway was on purpose. They didn't expect to find something anyway. And Walitt saw his chance to prop up his interoception department. He concocted a new explanation for decreased TPj. Maybe decreased because of the effects of OI, the tapping-test only takes 15 minutes, but the set-up takes longer? Patients were already drained?. No difference between groups in OI, isn't that a bit too convenient? And no POTS? No drop-outs? We're they rigorously talked into staying/coming back? Were they hand picked? 15 neurologic trials and nothing found? Were they looking for the effects of OI or AI?
Van Campen/|Visser had me do a simple N back test online, 2 picture and 3 pictures back. On 'bad' moments my 3 back mistakes doubled and reaction time went up 50%.
Cardiologists can find and neurologist can't find?

Next step for Walitt. We'll find you a nice pill to prop up your TPj, it stings a little but that means it works. ME/CFS is 'cured'?
Interoception is here to stay and Walitt is a 'hero'?
Koroshetz gave proof: 'The community (that's us) really has to understand this'.(TPj)
He doesn't take ME/CFS serious, but he thinks he can fool us.

 

And it isolates the victims.

My friend was a shy 12-year-old when she had to front up the most intimidating teacher in the school. Students of colour probably made up about 12% of the population, but as far as I know, no one else in our year group ever made a complaint. Having to endure it was bad enough, without having to find the courage and emotional energy to speak up about it—knowing that this would probably lead to even worse treatment.

An old trick, like you say.

 

Ah, I've been trying to work my way through that paper as it's one of the only ones (maybe the only one?) they cite about the TPJ. It is a review paper that presents a hypothesis/framework for TPJ function. This is somewhat outside my area of expertise, but they detail at least half a dozen other hypotheses out there for TPJ function, and make the point that the TPJ is one of the most morphologically variable brain areas in humans. I think it's worth pointing out that this is the only evidence they cite for this statement specifically:

But, according to their own reference, the TPJ as a whole plays roles in many different processes, not just willed action and movement. The TPJ is a pretty large area with several sub-regions, but the analysis the Walitt paper shared didn't specify any sub-regions. Some of the other areas in which the TPJ has been implicated according to their own reference include theory of mind (distinguishing between self vs other), body ownership and self-distinction, episodic memory, language and number processing, and orienting/attention. To me this begs the question, why did Walitt et al settle on this specific interpretation?

Considering this "match/mismatch" hypothesis is new and as of yet unsubstantiated, why are alternative explanations or interpretations not considered? When they say "PI-ME/CFS participants are accomplishing what they are intending", they're essentially suggesting that the ME participants intentionally failed to maintain grip strength in the study. Couldn't that also mean that they had reduced performance expectations versus HVs, in that they are more aware of their propensity toward muscle fatigue? Couldn't it also implicate attentional processing and ability to engage in a sustained motor task? This isn't even getting into the details RE the comparison across raw blocks instead of standardizing the analysis around fatigue onset, which I suspect didn't give them significant results. While I don't object to speculating around results like this, I do have a problem with using a hypothesis paper as the only justification for your interpretation of the data, especially without more elaboration in the discussion. Honestly not sure how this one got past peer review.

Further, the vast majority of the results discussed in the reference paper implicate either the left or the right TPJ as responding to certain cognitive tasks, hence the match/mismatch hypothesis. But in the Walitt paper, they report bilateral (both regions) TPJ activity changes, which from what I've gathered seems unusual? Like I said this is a bit outside my realm of expertise, but I'm trying to connect with someone who works in that field to discuss the data/results more in the context of the field, because I have a feeling there are many other ways of interpreting that result. The interpretation of the data here is particularly damning, and also the entirely predictable consequence of unchecked bias. Almost as if biases can impact every aspect of a project regardless of study design.

 

Yes I had these questions in another thread: the handgrip one, which you may have seen.

 

@SNT Gatchaman I'm about to resurrect that thread, I have questions lol. I was recently granted access to the study data too and hoping to do some re-analysis, but I'm not super familiar with this type of data analysis, so who knows how far I'll be able to get.

 

@Janna Moen PhD - Apologies if you've already stated, but do you plan on sending any review or analysis to the authors (Walitt, Nath et al)? Would love to see how they'd counter whatever insight that I know you could challenge with.

 

Thank you for that elaborate post, I find it very interesting to hear what you have to say about it.

My issue with the paper contextwise is that

a) Walitt has been busy trying to "prove" fibromyalgia is a psychosomatic illness, a sensation-based delusion, a disorder of subjective misperception that leads to inappropriate behaviour, by using fMRI for 15 years now. He considers fibro and ME/CFS the same thing with a slightly different sensation focus (fatigue instead of pain), and he's been calling ME/CFS the same type of disorder (reducing it to a sensation of fatigue), which he dubbed "interoceptive disorder", since as early as 2010. His opinion on this pops up in several papers over time. On paper he started to prepare to "research" ME in the same way, by using neuroimaging, just before he got appointed to the NIH intramural ME/CFS study, describing ME/CFS as a subjective perception of fatigue, and that "like chronic pain sufferers, CFS patients have been shown to avoid physical activities......It is the fear of feeling fatigue that can lead them to avoid activity." This all predates the publication of Doricchi's TPJ theory by years, so its reference, particularly because it is a hypothesis, reads like grasping at straws to make his view seem substantiated, something looked for instead of an organic fit.

b) He became director of his second unit for interoception disorders in 2021, under which he includes ME/CFS. That cannot be based on Doricchi's TPJ hypothesis. (And if it was because they are emailing or something, it's even more premature than the cart-before-horsing it already is.)

c) At the moment it is very much in vogue in the CBT/psychosomatic movement to do neuroimaging studies that focus on the activity of the favored brain region that is supposed to "prove" their theory is right and CBT is a justified treatment. Walitt et al reminds me of those, with just a different favored brain region, the TPJ. Walitt himself has referred to at least three of those for his own ME-related claims:

1. Van der Schaaf et al in the "Deep phenotyping" paper for the claim "Conscious and unconscious behavioral alterations to pace and avoid discomfort may underlie the differential performance observed."
   Van der Schaaf et al is a Knoop vehicle and it linguistically draws the same conclusion re. effort preference as Walitt, only based on different brain regions.
2. Caseras et al in the 2016 NCCIH paper Neuroimaging of Central Sensitivity Syndromes: Key Insights from the Scientific Literature - PubMed (nih.gov), which he uses as an example of "the development of evoked fatigue paradigms that can be performed in the neuroimaging environment". Caseras et al is an effort from the King's College Psychiatry Department, including Trudie Chalder. Peter White helped with recruitment.
3. De Lange et al, again for the 2016 paper on ME/CFS as a central sensitivity syndrome that cen be studied with neuroimaging, which he uses to discuss gray matter in ME/CFS. De Lange et al is a study involving Bleijenberg and Van der Meer that is obviously meant to substantiate CBT as a valid treatment suggestion for ME/CFS via brain imaging.

Again Doricchi's TPJ hypothesis is not just that, a hypothesis, but it also post-dates Walitt's claims of ME/CFS as a psychosomatic disorder that can be researched with brain imaging.

I'd not be surprised if the reference falls apart as a substantiation, because Walitt's views do not stem from it - it seems more like a convenient hook to hang his hat on.

A great question.

 

Thank you! I am planning to stop doing this, but so far it's been difficult not to get back to it.

I want to emphasise that I'm not after giving someone just desserts or providing a gotcha! thing.

I did not know Walitt or Koroshetz at all before I started to look around on this topic, and I only knew Nath very, very vaguely by name as a "good ME researcher". I now do think poorly of them based on what I've seen them do (it's a consequence of seeing that), and I do express that at times (because I think it's so bad that it needs to be pointed out), but in the end my personal opinion of them doesn't matter besides where I put the limit on acceptable behaviour; it's about analysing and organizing their actions.
I am talking about people, what they focused their career on, what they saids and did and when they did it, but none of it is personal. (And this is adressed in general to all readers: I would appreciate it if you use my material as such as well. I understand it if you hate some of these players' guts, and I report some bad and questionable actions, but please don't use what you know from me as a cheap gotcha, use it to hold people fairly accountable.)

Yes, absolutely! The example you gave was from The Netherlands, which is a crab bucket* of a country, but it is certainly plausible that similar mechanisms are at play within a hierarchical institute where internally ME/CFS has been ridiculed and dismissed as neuroticism for decades. From Nath's account he got ghosted when trying to compose a team, which he tries to frame as researchers being chased away by pesky oversensitive criticism from the ME community. That's bull, but there might be a kernel of truth in it in that some researchers fear engaged patient feedback. Most illness researchers work without their used patient community taking much interest in it. In the case of ME that is not so, which some researchers have stated is actually heaps of fun, but I can imagine for some researchs it can feel daunting.

It's unlikely that that is enough to frighten away any serious and interested researchers like Nath and Koroshetz imply, but it may be a particle of the whole. If you work at the NIH, an institute that has been historically hostile to ME/CFS and the people who research it biomedically, which certainly still seemed to be so until fairly recently (In 2013, 2 years before the intramural study was initiated, Hillary Johnson asked a Gallo Lab scientists about how they felt about ME/CFS at the NIH and he replied: "They hate you"), and Nath emails you if you want to direct your NIH career towards researching an underfunded illness that most of your colleagues (and probably you as well) think is neurotic, which will lead to scoff and ridicule from your colleagues, potentially threaten your reputation and career within the NIH (ha, ha, it's team tired), with scarcely any funding guarantees in the future, on a patient population that everyone around you tells you is hostile to researchers, to then have your results be pored over by those patients. Yeah, I get why several who Walitt contacted were busy washing their hair. But the issue is then not so much the patients as it is indeed the fear of breaking institutional conformism for a project with low funding prospects and collegial respect, and a belief in prejudiced claptrap.



Edited to add * this may not be the right term used; I meant that it is highly conformist to ideas, prejudices and protocols with a tendency to group think and dismiss/ridicule/criticize/ostracize anyone not conforming, no matter how well-founded the reason for that non-conformation is.

 

Thanks @Arvo for giving me a slap on the wrist, not to use your work for a gotcha! thing.

I'm a little crab that was pushed to the top of the bucket and I decided to jump over the rim to see what is out there. You'd be surprised how many little crabs out here are doing the same. Fitting all our political party's into one ballot paper can be a real puzzle. Forming a government, after elections, is a nightmare.

I did speak/write my mind though and everyone is allowed to criticize what I wrote, I welcome critique. When I reply I have to put my thoughts into words and that also make me think and rethink.
I made it personal, yes I did. I was outspoken, take it or leave it. It feels personal too, it's also about my ME/CFS.

Thanks for the additions you made.

 

I have no doubt this stigmatisation happens; bad researchers can't handle even justified criticism, easier to smear the already-marginalized people for being critical, though I doubt if they are baiting.

Maybe. I don't see it that way. (But I can be mistaken of course, the NIH ME/CFS project is obviously failing and I've seen similar sentiments in replies on some US ME advocate pages, and I think American advocates themselves have a way better understanding of it than I do.) So far I think everything also still fits a rather run-of-the-mill scenario of a badly executed institutional fuckup being covered up with more fuckups in an ME-specific setting (So with an additional helping of prejudice and patient-blaming.). I would not be surprised if a cocktail of arrogance, indifference, vanity, ignorance, overconfidence, incompetence and prejudice, combined with an emphasis on the study as a PR exercise over actually wanting to get it right, play a more central role as a driver than actual deliberate setup to fail or patient-baiting.

The NIH sucks at ME -it has a long track record of neglecting and dismissing it with a terrible, if not outright hostile attitude within the institute. (Straus had a big influence on that; btw, unfun fact that I keep forgetting to post, Straus is the much-honoured founding director of the NCCIH, then still NCCAM, leading it until 2006. And Francis Collins holds him in high esteem and thinks he was the perfect superscientist (page 2).)

It's unlikely that there has been a major culture change at NIH (there are often hints that, bar some individuals, NIH is still an institute where prejudiced views of ME and its patients are allowed to roam free.). So, did they pick it up because they wanted to or because they had to (because of congressional and public pressure?) in order to not seem neglectful? I don't think they are deliberately setting up patients, I think NIH as an institute was (and still is) just not ready to take on this project in earnest due to widespread in-house prejudiced attitude, lack of in-house knowledge or care to get it right, and an inability of prominent players to grasp the problem of ME prejudice and misogynistic disablism, or the real-life consequences of their in-house academic activities - which left it vulnerable to creating the mess we see today. (But, again, American activists can tell you way better if that is a correct notion or not.)

I'm reminded of the response here in The Netherlands from the male leaders of institutes with a toxic bro culture, where sexist and misogynist attitudes were rife on the work floor, who were confronted with that publicly and forced to address it.

I feel like I'm looking at a similar situation where you have to be seen to do the right thing and to care, but internally that means taking action accordingly (like holding men in your work place, including your office mates, accountable for bad behaviour) which you are not ready for: you don't really want to, nor do you really understand the problem of it, and you have to do that on behalf of people who you often share the same prejudiced views on and who are internally labeled as "not one of us/complainer/fussy/overreacting". So you get public "We Care So Much" remarks from leadership, while later internal commication documents and accounts show that the work place culture continued, attitudes were still sexist while unchallenged and blaming the woman if she said something about it, and that major players didn't get the problem.

 

Ha, it was not meant as a slap on the wrist, maybe more of a reminding nudge. Your remark was an immediate cause to post a reminder, but I wanted to make such a remark earlier.

Which is fine. And you are right, it is personal. It is your life and treatment that is influenced and actively harmed, and I think being very angry at the carelessness, mean prejudice, exploitation, psychosomatics-facilitation, patronizing and gaslighting (and more) is completely justified. As is its expression.

I think I reacted most to your remark that Walitt and Shorter et al deserve to get offended, and I wanted to clarify that I am not out to offend or "punish" them. (Also, several seem to be easily offended by any pushback from the unwashed masses patients, if that was my aim there are probably easier ways to do it. ) I have been puzzling together some context of this study. If it makes them look bad, that's not a consequence of me looking for it. I would have loved to find better things, for all involved. But I didn't, at least not so far.

I also know that I can underreact to bad things, especially when I'm in "research mode" (because anything is acceptable when putting together what happened), but make no mistake: I am fine with your anger and its expression of it.

 

When things go very wrong, I think it can be easy to forget how stupid, incompetent, clueless, illogical, etc., people in positions of authority can be--like people everywhere. Just because something is done badly and unacceptable decisions have been made doesn't mean it was all planned out in advance. The idea that a project of this size, cost and scope, and one under such intense public scrutiny, was deliberately pursued with the intent fucking over the entire patient community is not something I can easily get my head around.

 

Fair. But looking at how they initially approached the study (2015/2016?), in conjunction with the cluster-fuck end product, may suggest they had a pretty good idea of where they wanted to go.

Oh, I don't think it's going to be limited to just one patient community.

 

I agree, I'm quite willing to believe Walitt really thought he could use fMRI machines to find the toadstone. And it doesn't surprise me that, millions of dollars later and having not found it, he felt a need to claim he'd caught a glimpse of it.

What really disappoints me is how few have called them out on it.

Yup.

 

Yes, it was a general response, not to your specific post. I didn't even remember the specific posts. I was just responding to the general thrust. I mean, this is a debate that often comes up in multiple contexts. It's almost like a philosophical question, maybe. I tend to believe many things that can be experienced as planned by those most negatively impacted in reality occur more out of stupidity and incompetence. So in looking at this question of whether something horrible has been meticulously planned with venal intent or is the result of incredibly bad decision-making, pre-existing bias, etc., I tend to opt for the latter.

There is no defense for the effort preference thing. But my assumption is that they believe in it, despite the lack of evidence. Otherwise, why would they write a whole paper about it? That would be a bit insane. Of course putting it at the center was a deliberate act. But was the actual intent of it to screw over patients and put them in a position to be blamed? I mean, I assume Wallitt genuinely believes in what he is saying, however stupid and antithetical to logic it is. It doesn't mean he's not completely self-deluded or an idiot or whatever.

Michael Sharpe is clearly self-deluded but I assume he sincerely believes that he is doing what is right and in the best interests of patients. I assume the same of Wallitt. To me, stupidity and incompetence are more compelling explanations.

However, I say that being very aware that I'm a non-patient who does not experience the terrible impacts of this kind of bullshit personally in a way that patients do. And could it be planned after all? Of course! Who knows, really? The world is crazy. Anything--and I mean that pretty much literally--is possible. Just look at my country at the moment.