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.