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

[dave30th]

They also must have known how weak the evidence is that they used to prop up their 'effort preference' idea.

It is very easy for people to convince themselves of all sorts of ridiculous things, and that certainly applies to scientists as well. I would be surprised if Wallitt was saying, we know this isn't true and we have zero evidence but let's do it anyway. Maybe I'm naive about how venal people can be. I assume he convinced himself the evidence was robust enough to make the claims. Again, that's not a defense. The end result is the same--awful and horrible science. And it doesn't mean it's not research misconduct either.

For example, the letter I sent yesterday about the Hungarian cross-sectional study that made causal conclusions. I assume the investigators are so stupid that they actually believe their own ridiculous argument. I don't think they said, we know we can't do this, but we're doing it anyway. Not fixing something afterwards, of course, is or at least has a greater chance of being a venal response rather than just a self-deluded one. If that all makes any sense.

 

[Trish]

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.

Whichever it was, all the other listed authors of the paper went along with it. I can't help wondering why.

 

[Kitty]

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 think it's possible to have both cock-up and conspiracy.

It's unlikely that there was an intention to screw over patients, and very unlikely that the whole thing was planned with that end. But it is possible that patients were used as fodder to some extent in a BPS empire-building strategy, as they have been in Britain.

 

[duncan]

To me this feels like a contrived forced fit. It reads like that. The logic feels like that. The entire Wallit thing doesn't fit. They jammed this thing in.

So why force it now when the spot light is on? Well, it could be Stupid and greed and culture. They seem to be present everywhere in medicine, along with inertia and legacy concerns.

Or it could be something more akin to politics, somebody wanting something and being placated. The insurance lobby comes to mind. Fear of litigation for past transgressions, too, I suppose.

I look more to the NIH's evolution.

 

[dave30th]

all the other listed authors of the paper went along with it.

That's a good question, and I've wondered that myself in some other papers with many, many authors. I've never been involved in a paper with this many authors from an institution. I really don't know what the process or politics is of getting everyone on the same page and in agreement. I assume most of them only understand their own part and don't weigh in on the rest. I mean, if you worked on a completely other part and not the Wallitt part, but he's the lead author and they're including your work, and you're at the NIH, can you refuse to add your name to the paper? In that case, can they use your data? I'm assuming there are all sorts of reasons why people at a major research institution can't easily take their names off a project like this if they're part of the group producing it.

 

[Turtle]

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.

Last bit. You seem to be on the tipping point of feeling it as if you were a patient. Real heartfelt empathy. Thanks

In my opinion Sharpe and Walitt are in the business of correcting the patients misconceptions about their 'illness'. Sharpe used his own misconception, PWME can't cope with stress.

Walitt was looking for 'something'. One thing I like about Walitt: he tried to avoid the blame-game. TPj, eureka, PWME can't help it.
But all the same searching is not researching.

 

[Dakota15]

Mods feel free to move, but sharing here if this wasn't already shared.

3/25/24: 'A Discussion with Dr. Avindra Nath: Ted Burns Humanism Award Winner’ (around 12:20 minute-mark)

Dr. Nath: “What is really challenging my mind at the moment, and I think what it is is in broad terms, it is the post infection syndromes. I say that because with the current pandemic, it's long COVID, prior to that it was chronic fatigue syndrome, and there's significant overlap. I think that’s another segment of society that has not been taken seriously. So often times, they come to the physician, and they get all the testing done and nobody finds anything wrong with them and they are labeled as being psychological, but really they have a biological basis. So, we spend a huge amount of effort trying to understand these diseases, understanding the overlap between them. We just recently published a paper showing that there are specific immune abnormalities that drive these two syndromes. There is a possibility that there is a residual antigen that is still present from the past infection that precipitated the event. There are similar syndromes: post Lyme disease, Gulf War Syndrome, sick building syndrome. They all, I think are one of the same. They just have different names. I think if you can solve one, you can solve them all. That is what I am very passionate about at the moment because I think it's a huge segment of society that's been impacted by this and we need to do something to fix this."

 

[duncan]

There are similar syndromes: post Lyme disease, Gulf War Syndrome, sick building syndrome. They all, I think are one of the same. They just have different names. I think if you can solve one, you can solve them all.

Oh dear. If there are persistent foreign antigens at play, then no, this argument cannot be right.

This seems to me more dangerous than wishful thinking.

ETA: They'd have to demonstrate an agnostic antigen, one common to groups of people, self-generated, but not a remnant or debris from the initial virus/bacteria/parasite.

I think they're trying to put all the bad apples in one basket.

 

[Sean]

I would not be surprised if a cocktail of arrogance, indifference, vanity, ignorance, overconfidence, incompetence and prejudice,...

So why force it now when the spot light is on? Well, it could be Stupid and greed and culture. They seem to be present everywhere in medicine, along with inertia and legacy concerns.

Or it could be something more akin to politics, somebody wanting something and being placated. The insurance lobby comes to mind. Fear of litigation for past transgressions, too, I suppose.

Plus desperation and cowardice in refusing to face up to what they have done, recently and historically.

Whichever it was, all the other listed authors of the paper went along with it. I can't help wondering why.

+1

Either they agree with Wallit's interpretation (or don't disagree strongly enough to care), or they feel they cannot speak out for some reason, maybe justifiably.

There are no benign explanations on the table here for what has happened.

 

[Arvo]

I mentioned earlier as a side remark that Shorter's talk at the NIH sounded highly similar to the talk he gave at a notorious CIBA meeting in 1992. There like at the NIH for example, he opened the talk with slides depicting 19th century women deemed hysterical.

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) .

A 2016 Hillary Johnson interview with Shorter corroborated that they were indeed highly similar talks:

“There were thirty to forty people there....I gave my take on CFS—I reprised my first ideas on CFS that I stated in From Paralysis to Fatigue. [published 1992] Certainly,” he continued, “there were no hostile questions, no challenges. There were a couple of patients there. They did not challenge me, which surprised me. Everything went smoothly.”

(MEAction reports that there was an audience of about twenty people, that there was one patient, and that she did object to the talk, addressing the room: "You are rooted in science, please go back to science and recognize a picture show of the 19th century as an old story.)

From MEAction's report:

M.E. denier, Edward Shorter, called CFS the modern version of hysteria in a presentation chronicling the history of 19th century hysteria before approximately 20 people at the National Institute of Health (NIH) on Nov. 9th. Shorter is a professor of the history of medicine at the University of Toronto."
In his presentation Shorter showed a picture of the classic” fashionable sufferer”, a Victorian woman resting on a bed of pillows, as an example of what he claims is a continued trend of women describing psychosomatic symptoms throughout the decades.
He concluded his presentation with the claim that hyper-sensitive patients reinforce each other in support groups, calling it a “toxic diagnosis”......ME patient and activist, Loetta Vann, attended the lecture, which she called “childish”.

From Osler's Web by Hillary Johnson, page 589, about Shorter's talk at the 1992 CIBA convention:

Moderating the conference was Toronto history professor Edward Shorter, whose recent book had called the disease a sham. Invited to place chronic fatigue in historical perspective, Shorter inaugurated the meeting by portraying CFS as a contemporary manifestation of the “hysterical” diseases afflicting women in every century, supporting his argument with slides of centuries-old illustrations.
Walter Gunn, in London to describe the CDC’s surveillance data, was sickened by Shorters contribution. He showed pictures of naked women with their limbs twisted in paralysis. If I had been a woman, I would have walked out,” Gunn said, adding, “It was all opinion. He has no data. His take is that the epidemic is due to press publicity.”

Note that two letters were sent to the ME community regarding this talk. One before the talk, on 4 November 2016, by Walter Koroshetz on behalf of Trans-NIH ME/CFS Working Group. And one after it, on 10 November 2016, by the Trans-NIH ME/CFS Working Group. Neither apologizes for, nor properly addresses the fact that, a misogynistic ablist ME hate speaker got a podium at the NIH to rehash his unfounded, misogynistic, hateful, 30-year-old opinion to NIH scientists, invited by the principal investigators of the running NIH ME study. (Instead both letters deflect and attempt to normalize the unacceptable.)

Edited to add: Behind closed doors, Koroshetz, chairman of the Trans-NIH ME/CFS Working Group and Nath & Walitt's boss at the NINDS where the ME study was housed, was upset not because Walitt & Nath invited Shorter, a misogynistic and ablist ME hate speaker, to address scientists at the NIH, but because SolveME/CFS's protested it, which he called "making a fuss" and "inciting mistrust at every twist and turn".

 

[Arvo]

The thing about the "deliberate vs fuckup" discussion is that

a) both the deliberate and fuckup scenario are liquid, running over in eachother and both have multiple possible scenarios that can be mixed together
(e.g. deliberate to bait patients, deliberate to keep a psychosomatic narrative running, deliberate because of a weightier contingency of scientists wanting that, deliberate because of perceived necessity, deliberate because of a perceived institutional opportunity, a fuckup because the study image and keeping patients' "trust" went above content, a fuckup because of a lack of actual engagement/care, a fuckup because of circumstantial bad hiring choices, a fuckup because of power imbalances, a fuckup because of vanity and fear of failure, etc, etc.)

b) there is a temporal factor: the intentions of 2015 may not be the same as those in 2021. E.g. a scenario is possible where intramural study scientists warmed up to the "interoceptive disorder" notion in the course of time - in which case you might say they are deliberately pursuing it now but not in 2016.

c) this concerns a group of people; even if you take only the five key players, Koroshetz, Nath, Walitt, Whittemore and Collins, I am not sure that they were a monolith in their initial and ongoing intentions.

I'd say I just don't know enough to confidently state what exactly happened there. That would take going through contemporary reports and internal documentation 2014-2024, maybe added with some interviews of people involved. I can give you a more detailed explanation on why I think there are clues for a "fuckup" scenario in Koroshetz' and Naths case, but in the end I currently just don't have enough info to make a certain statement on it beyond an assumption based on what is there. (The only thing I do feel comfortable assuming is that Walitt had the intention to use neuroimaging to prove his theory on ME from the get go. But was that what he was hired to do, or did he get hired out of necessity after which circumstances gave him so much room to do his thing?)

Also: deliberate or fuckup matters to understand exactly what happened, but it also doesn't matter in order to draw the conclusion that, regardless of the underlying reason, bad actions were taken. So while it is an interesting and relevant question to pick apart, I don't think it matters much re. accountability.

 

[Trish]

I think the "deliberate" versus "fuckup" question does have relevance because it has implications for the future.

The appointment of Walitt to a position of power over ME/CFS, Long Covid and GWI and anything else he manages to drag in to his Interoceptive department at NIH may have been a mistake based in ignorance on the part of those who appointed him, ie a fuckup.

But his assumption of that role and the way he chooses to wield the power it has given him enables his ongoing deliberate twisting of research and publications to fit with his prejudices. If his "effort preference" placement at the heart of the research paper had merely been an error, it might have a chance of being corrected or quietly dropped from future publications. If it was deliberate, as I feel sure it was, he will double down on it.

 

[duncan]

I worry that this is a top down phenomenon, one with many points of influence. I think it predates Wallit,, that he is a downstream ripple, a means to an end, much as the BPS school is.

Someone years ago suggested the way out of this morass would be through political leverage. Maybe so.

In the meantime, I think we should scream like banshees to every press outlet that has ears to listen and a platform from which it can broadcast our story.

 

[Sean]

So here we are, eight years and eight million dollars later, left with yet another rare critical opportunity to make some real progress just hijacked and perverted by the psychosomatic club, featuring a particularly nasty and blatant kick in the face to us from yet another round of the vile prejudicial bigotry spewed out by that well-known serial offender, Shorter, serving no possible legitimate productive ends whatsoever.

Because reasons. None of them good.

But apparently it is somehow our fault. Again.

Pretty clear to me what the NIH* really thinks of us. There is nowhere left for them to hide now.

Real mystery why patients might be angry about that.

(*Not all the NIH. I know there are always good people in any broken system or institution trying to do their job properly and get the show back on track, and I am grateful for their efforts. But it ain't working yet, hasn't for decades, and is not showing much sign yet of doing so anytime soon in any consistent manner.)

 

[Binkie4]

I am confused that this study went ahead.

There was such difficulty in recruiting that they were unable to recruit the proposed number (40). The reason given was that the pandemic interfered with recruitment but when Brian Vastag posted on here in March 2018, he stated that they had 16 participants.

https://www.s4me.info/threads/usa-n...-nih-intramural-me-cfs-study.2980/#post-53647

That was 2 years before the pandemic and in that time, only one additional person was recruited. Did the study stop recruiting or were they simply unable to recruit more because of doubts in the patient community? I think that's an interesting question. Was there a loss of interest in recruiting from 2018 on; if so, why? Or did patients not come forward in the next two years.

OTOH they were able to recruit very well informed patients like Brian Vastag. Walitt could present himself in such a way that Brian was impressed by his sincerity and helpfulness. On reading the above thread, it is clear that Brian believed he was taking part in a fully biomedical scientific study. What an opportunity missed. Is it possible that it was a biological study initially but someone changed the focus around 2018?

Deliberate vs fuck up? Definitely deliberate on the part of Walitt- he invited Shorter, his article in 2015, his history. He couldn't have changed his views so significantly by 2016. Nath- maybe he left so much to Walitt that the direction was set by the time he was involved again.

 

[ukxmrv]

Plus desperation and cowardice in refusing to face up to what they have done, recently and historically.

+1

Either they agree with Wallit's interpretation (or don't disagree strongly enough to care), or they feel they cannot speak out for some reason, maybe justifiably.

There are no benign explanations on the table here for what has happened.

It does put a bit of a spin on the tired idea that it is patients that are the impediment to researchers wanting to get involved.

Imagine being involved in this research and seeing Wallit put in a position of power, of seeing Shorter trotted out, the 'tired group' named, the paucity of patients and then the underwhelming results.

Imagine seeing your name on a paper with Wallit's area of interest included and his questionable spin.

Why not speak out? What stopped them. It's not fear of patients.

The lack of respect, the lack of care and the way things can be hijacked by vested interests must be a huge message to researchers.

 

[rvallee]

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.

I'm sure they believe in the broader construct, the underlying goal of proving the ideology correct, but they obviously know that their means and methods are wrong, so in the end it isn't a question of malice or incompetence, but of either incompetent malice or malicious incompetence. The outcomes is the exact same whichever it is. It's a lot like a prosecutor lying or fabricating evidence to convict someone they are certain is guilty, with the complicity of the judge and attorney-general. It may be that they are correct about it every once in a while, but the premise of legal systems demands that it can't be done this way.

It does all make so much more sense when you consider the fact that everyone is winging it all the time. It explains most human behavior, and it certainly explains everything happening here. They are taking an ends justify the means approach in a context in which the ends they achieve are massively harmful, while taking unethical means to achieve it. It's actually hard to be more wrong than this.

 

[rvallee]

So why force it now when the spot light is on? Well, it could be Stupid and greed and culture. They seem to be present everywhere in medicine, along with inertia and legacy concerns.

It works every single time. It would actually be weird if they didn't do it again this time.

Even with the NICE guideline working against the ideology, it was and is still resisted and there has been zero harmful consequences to anyone but patients for it. And there was a LOT of spotlight there. Then there's the ongoing example of Cochrane backing down from doing the bare minimum as a result of overt threats and it's easy for anyone to make the quick calculation that it's better for their career to do the wrong thing than it is to do what's right, which will only get them punished. Papers keep being published doing the exact same faults, like arguing causation when their methodology doesn't allow it, and journals can't be bothered to care.

Long Covid is proving just how deep this problem goes in medical culture. LC revealed everything, proved us right about the whole thing, and it made zero difference, it's fought just as harshly and as a consequence the whole thing has already lost all momentum. This is all politics, and the imbalance of power is total. Medicine is simply incapable of accepting they get major things like this wrong, and will likely continue to fight it until the whole thing is overcome by events, most likely from artificial intelligence invalidating everything for lack of evidence and being built out of bigoted myths and logical fallacies.

Expecting humans to do the right thing is one hell of a recipe for disappointment.

 

[duncan]

This is all politics, and the imbalance of power is total. Medicine is simply incapable of accepting they get major things like this wrong, and will likely continue to fight it until the whole thing is overcome by events, most likely from artificial intelligence invalidating everything for lack of evidence and being built out of bigoted myths and logical fallacies.

I still want to rail.

Expecting humans to do the right thing is one hell of a recipe for disappointment.

Especially when inserting ideology into the mix. Ideologies come and go, though. This is sustained bullshit that has endured scores of years, and spanned countries and continents. I'm not sure what the constant is beyond sick people being mischaracterized and ostracized. Who consistently benefited throughout all those years?

Besides marginalized patients, what was the constant? I cannot get my head around it, but I feel its influence in Bethesda.

 

[TiredSam]

Not quite sure why the deliberate / fuck up distinction matters much. Whichever it is, they are in the way. They are not helping. They are perpetuating harm. Even if they are just incompetently fucking up over and over again whilst clinging to their delusional ideology, they are not open to feedback or persuasion anyway, so we might as well proceed on the basis that they are deliberately perpetuating evil, and if that's too harsh and they feel unfairly treated, so what? How many thousands of us have become unfairly treated collateral damage over the decades? At least they still have their health.

"Making a fuss" and "inciting mistrust"? Well that's because every time we play nice we get screwed over. And what kind of response to sufferers' legitimate concerns is that? I don't care if these posturing idiots are nasty or just stupid, can we please just get them and the drivel they spew out of the way?