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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...

I think you might be referring to the first item in the reply Trish received: which I found and still find absolutely bonkers. I've been trying to follow this topic in the last days, but it turns out it's a bit too much for me as well. (Although I think I do understand the basic gist of it -...

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...

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...

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...

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. A 2016 Hillary Johnson interview...

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...

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...

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...

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...

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...

THIS (@bobbler, I wish I could triple-like that whole post)

Thank you for that addition @Laurie P! Very informative and illustrative. (ed. to add: it's also shocking that Koroshetz framed criticism at his team for inviting a particulalry nasty hate speaker and ME denier as "making a fuss" and "inciting mistrust at every twist and turn" which upsets him...

To me it appears like a very hamfisted way to make a Walitt-caused potential PR disaster go away. (A scenario where Walitt felt that he was getting so much room to have his way that he could invite Shorter and have it accepted is not unthinkable - and that is in the end what happened as well.)...

Thank you Dakota15. It is the reference in the paper, so nothing new, but this seems like something @Janna Moen PhD might find interesting, as Walitt emphasises the article again as substantiation and it comes with the message that the diagram may be "particularly useful". Edited to add...

Post 2/2: (Edited to add: eek, it got long! TLDR: the PEM of ME/CFS so far got sidetracked to a "how it feels" questionnaire study, designed by Stussman. Stussman and Walitt also developed "an interview tool for assessing post-exertional malaise. This tool will be used in an NIH study of...

Post 1/2 O my... Related to this: So, the lead author of the two PEM publications Walitt and Nath brought out, the ones in the study Q&A the Trans-NIH Working Group refers you to if you ask about it, Barbara Stussman? She's the NCCIH's long-time questionnaire lady. She has been working at...

I'm cognitively not awesome atm, but isn't the letter giving a somewhat different impression of what the project is? The letter implies it's about a survey about "how the patients are treated" by the clinics in the sense of attitude, type of treatment, good/bad things about the service, like...

I think that might be too much to conclude, but it indicates that Nath was relying heavily on Walitt and was grateful that he covered Naths shortcomings as PI. It might be considered as a reason why Nath lashed out so abusively and absurdly in response to criticism to Walitt's involvement in...

That is good to hear, thank you. It is possible, but essentially I can't tell you the motivations for hiring Walitt atm. To get a better understanding of that I think you'd need to collect contemporary remarks made around the time of his appointment and look at FOIA-requested internal...