USA: National Institutes of Health (NIH) intramural ME/CFS study

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Wilhelmina Jenkins said:
So I see the slowdown of the initial excitement as a result of NIH’s incredibly poor history in addressing this disease and constructively engaging the community rather than active sabotage.
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This certainly echoes with ZonMw’s granting 4.4M€ to Prof Rosmalen in the Netherlands. The same mistakes are made on both sides of the Atlantic Ocean.
 
mango said:
But they do. Brian Walitt is literally the lead clinician.
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That's actually part of the reason why I am so hopeful about this. If they found some consistent biological difference with a BPS person like Walitt in such a role, it must be pretty solid. Maybe in the end it will be a BPS guy who wins the Nobel Prize for discovering the etiology of ME/CFS. (Just kidding, but it would be super ironic.)
 
mango said:
But they do. Brian Walitt is literally the lead clinician.
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How much time have you spent with Brian Walitt?

I spent many many hours with him. He just devoted 6 years of his career (and life) to the deepest biological study ever conducted on ME/CFS.

Does that mean anything to you?

Edit: I'd like to add a few things. Brian Walitt is a rheumatologist, not a psychiatrist. He was not involved in PACE or has he ever worked with anyone in the UK BPS world. He took on the NIH intramural study as a second job, essentially, and worked very hard to run patients through the protocol, which was extremely detailed and difficult to manage from a clinical researchers' perspective. Like the other patients in the study I've talked with, I found Brian to be compassionate, a very good listener, and 100% dedicated to running the study. He's also kind of a dork, but that's not all that relevant.
 
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B_V said:
How much time have you spent with Brian Walitt?

I spent many many hours with him. He just devoted 6 years of his career (and life) to the deepest biological study ever conducted on ME/CFS.

Does that mean anything to you?
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I haven't spent any time at all with him personally. I personally wouldn't even consider participating in a study where he (or someone like him, with a BPS history like his) had such a key role. It's something I feel incredibly strongly about. I would never be able to trust someone like him in a role like this one, knowing what I know about how informed consent, patient safety etc is being mis/handled by people like him, people whose work is based in the BPS model of ME.

However, I did carefully read up on his previous work, listened to several of his talks, read several of his articles etc, way back when it was first announced that he would be part of the intramural study. Based on that, I'd say I'm familiar with his perspective and his views on patients and the illnesses in question.

You are probably familiar with the expression "When people show you who they are, believe them the first time." As of today I've never come across any kind of content by Walitt where he expresses any kind of change in perspective, nor any apologies for the harmful stuff he has said and written in the past.

Should Walitt one day change his views and his perspective on us as patients and our disease, I'd be willing to listen to him with an open mind. Also, I would definitely expect a genuine apology for all the harm he has caused over the years. I need him to show me that he understands that he was wrong, and what consequences that has had for the ME community. Words are cheap, though. I would definitely need to see a sufficient amount of meaningful action from him over time as well, to convince me that he truly has changed perspectives on us and our disease. He would have to earn my trust back.

I have read all your updates with great interest from the very start, and I'm super grateful that you have so generously kept us all well informed all this time. Many many thanks, it really is deeply appreciated.

I'll be honest, though. The fact that Walitt has spent 6 years on this project doesn't mean anything at all to me in this regard. People do all kinds of things for all sorts of reasons. It's his job, it pays his bills etc, I wouldn't make any assumptions beyond that. I would hope that he does his job in an ethical way, with the patient group's best interest as his primary goal (regardless of his personal opinions and speculations about what would be the best for the patient group, the cause and perpetuating factors of our disease, and so on), but I obviously have no idea if that's the case or not.

Personally, I don't believe a person can be completely objective or "neutral" in a situation like his. He's a human being, everything he perceives will be filtered through his preconcieved ideas and what he believes he already knows about our disease and about us as patients. And for some unfathomable reason he's the one who has been assigned the task of interviewing patients about their thoughts, feelings, behaviours etc, and interpret their answers for the analysis and publication? This is a massive red flag to me. A dealbreaker sized red flag. I have zero trust in him in this role, to be frank. Actually less than zero. Based on his previous work, I deeply distrust him in this role. Therefore, I have no trust in this study as a whole either.

It's nice to hear that you have had a nice experience with Walitt personally. Very sorry to say that this too doesn't mean anything at all to me in relation to his views on us as patients and our disease, or his suitability for the role. We all know of many BPS people who are very skilled at coming across in all sorts of positive and likeable ways, but their views and actions are still extremely harmful and problematic.

Again, I really do appreciate everything you have done to make this study happen, including your personal sacrifices. It really is valuable. Thank you.

Sorry if my thoughts and feelings on Walitt's role in this study are upsetting to you.
 
I have never met Dr Walitt, but I have met Dr Nath. I think that you may be overestimating the influence of Dr Walitt’s previous views on the ME/CFS community here. He was not a well know researcher and I think that he is someone who could easily change his mind about this disease when presented with evidence. You are asking him to apologize for damage that he caused, but quite honestly I don’t think that he caused damage because he did not have sufficient prestige to do so even if he had wanted to. Dr Nath - a very prestigious doctor on a mission from the Director of NIH - would not have allowed anyone to sabotage this project and I don’t think that Dr Walitt wanted to. That would have been a career-destroying move on his part.

I do think that you have to consider the different trajectories that this disease has taken in the US and the UK. The people who led research down a bad track here are dead and gone. The comments that Dr Whittemore made, and apologized for, were not about the biological nature of this disease, but were rumors about patient activism in the past. I’m going to say again that my opinion, based on 40 years of living with this disease and 35 working in the patient community, is that the people in charge of government research here in the US believe that this is a biological disease. Our big problem - and it is a big one - is a lack of urgency from our government agencies. Our challenge is to make sure that whatever leads come from this paper are appropriately funded.
 
Walitt's views were pretty bad, and, extraordinarily, enough people with decision-making power in the NIH thought that Edward Shorter's extremely misogynistic views about CFS were interesting enough to have him come to the NIH during the ME/CFS study. So, I think some concern is warranted.

That said, I think it might be possible for someone like Walitt to hold the two views at once, i.e. that there are patients with an identifiable but not yet identified biological pathology, including Brian, and that there are others (probably mostly female) who are being hysterical or whatever more palatable label people prefer to use. So, it's possible that Walitt could do a reasonable job on the NIH study, while still also holding BPS views.

For sure, Nath has been consistently reasonable. I have no reason to doubt his integrity or care. I'm pinning a fair bit of hope on him.
 
Sid said:
From Brian Vastag’s thread. Very worrisome and yet totally predictable outcome. I remember reading the original protocol and thinking no one with actual severe ME/CFS will be able to endure this.
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No, people with severe ME could not endure the study. But I don't know how any research outfit could do an in-depth study of ME without exacerbating some symptoms. And I don't know how anyone can study PEM in a controlled setting without triggering PEM. Patients could opt out of any or all tests at any time.

Edit: I'll give an example of how Brian Walitt took some of my complaints into consideration. I found the metabolic chamber to be very challenging, because it was very noisy (fans) I got very little sleep. So instead of keeping me in there for 4 days straight, he modified the protocol for me so I could spend 8 hours each day in my regular hospital bed and get some rest.
 
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There must be a percentage of researchers/medics who adopt bps views to some extent but aren’t full on true believers. If your professor is a proponent for example i imagine it must be easier to go along with that thinking. Some of these people must be susceptible to changing their positions when they move into different circles, are presented with different perspectives and information.
 
I wonder if the slowness to bring the results into the public is because of a desire to get all the ducks in a row, to make sure things are unassailable so that people within the NIH and in politics who don't believe in ME/CFS as a biological illness can't easily attack it? A sort of going slow, to win quicker? And maybe to work out what any finding might mean for future research, testing and treatment and start to make preparations? I mean, if there was a a fairly solid finding, that could prompt lots of people with ME/CFS to leap into speculative treatments which could end badly.

I'm not sure I entirely believe that, but it would be a generous interpretation.
 
They have just published a preprint of their PEM paper, so they're not totally against preprints. It's not a biomedical paper and has no new findings about ME/CFS, (though I think it's useful in demonstrating the limitations of retrospective and questionnaire based studies) so maybe they see that differently.
 
mango said:
The fact that Walitt has spent 6 years on this project doesn't mean anything at all to me in this regard.
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Agreed. He is getting paid plenty of money to do it. It's his job, it's not like he is sacrificing himself.

Hutan said:
I wonder if the slowness to bring the results into the public is because of a desire to get all the ducks in a row, to make sure things are unassailable so that people within the NIH and in politics who don't believe in ME/CFS as a biological illness can't easily attack it?
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It will be very easy to attack though, because it's only a handful of patients. Same reason the nanoneedle study wasn't taken seriously by anyone. It would have been better to publish a preprint ASAP and start working on replicating on a bigger cohort.
 
Jaybee00 said:
“Avi Nath thinks it's very important to complete traditional peer review on this paper before releasing it.”

But you can still have traditional peer review from 99% of journals even if you have submited a preprint online!!

Nath’s old-school mindset here didn’t benefit anyone.
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The only explanation that makes sense here, that justifies doing this, is that it's a major breakthrough and it would have less impact being attacked as "not yet peer-reviewed", since those attacks would have months to go around before the truth comes out. Otherwise it'd be extremely disappointing, but that's how academia is built: competition for credit before cooperation for success.
 
I agree with some of the sentiment above.

I think Nath knows the controversy surrounding CFS. He’s knows he’s very outnumbered by physicians who believe CFS is mental.

His paper has to be indisputable the day it prints for the public.
 
To add: It seems the NIH has decided to take this same study and run it in Gulf War Syndrome patients. My gut feeling is they wouldn't be doing this if they didn't find something in the big CFS study.

The research will focus on the immune and autonomic nervous systems, as well as the body’s energy-production pathways.

Eligible veterans will be invited to the NIH Clinical Center for up to two weeks for comprehensive testing. Among other tests, the research protocol includes administering a peak exercise challenge to trigger symptom flares. The procedure has been used to explore the mechanisms of other chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome.

 
belbyr said:
To add: It seems the NIH has decided to take this same study and run it in Gulf War Syndrome patients. My gut feeling is they wouldn't be doing this if they didn't find something in the big CFS study.

The research will focus on the immune and autonomic nervous systems, as well as the body’s energy-production pathways.

Eligible veterans will be invited to the NIH Clinical Center for up to two weeks for comprehensive testing. Among other tests, the research protocol includes administering a peak exercise challenge to trigger symptom flares. The procedure has been used to explore the mechanisms of other chronic illnesses, such as myalgic encephalomyelitis/chronic fatigue syndrome.
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Yes, the GWI study has been in the works for a few years. Brian Walitt mentioned that other groups wanted to use the intramural ME/CFS protocol.
 
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