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USA: National Institutes of Health (NIH) intramural ME/CFS study
- Thread starter Simon M
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Just to clarify - I am not trying to be on Nath's side. I have had concerns about the study since the first protocol was leaked. (I sent them a lengthy email then about some of my concerns re the protocol).
I just find it very confusing that so many people would be able to exercise, not have cognitive issues because not only did Walitt "screen" folks but there was a committee including experts (from Workwell, Bateman and others) who reviewed the charts of those who made it past Walitt.
Another advocate asks how did Nath measure worsening after cardio? (Patient report, objective measure, combination, neither?) Did they repeat cardio the next day?
Sid
Senior Member (Voting Rights)
Not in the slightest. Many of us here warned about Walitt from day 1. I regarded this study as dead on arrival.
Robert 1973
Senior Member (Voting Rights)
Would be interested to hear your thoughts on this @B_V
Nature Communications is a good journal. Publishing there doesn't mean they found nothing...what a weird comment.
Edit: It is open access and myself and some others encouraged Nath to publish as a preprint and OA, so maybe that's why it ended up there.
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Deconditioning strikes after 5 years? This will really surprise my cardio who thought it could set in after a week on the couch with covid. I guess deconditioning is just whatever they want it to be.
Honestly though this is really fucking dreadful. The promise of this study has been one of the only things keeping me going the last year or two. I can't be the only one who felt this way. I knew about wallit but Nath seemed to really get it.
Edit: reading that thread it's even worse than it seems:
Hillary Johnson: journalist@oslersweb
19h
End of talk, Q&A begins: Q) Can you talk about PEM? (Nath) It's a patient-defined term. Every person describes malaise differently--no good qualitative way to understand it. You have this alphabet soup, a potpourri of symptoms that will go with it
How the fuck is it so hard for medical people to grasp PEM? It's so maddening!!
It's like hey time to rip off the masks we've wasted years and and years of everyone's lives and it turns out we didn't give enough of a fuck to understand the basic premise of what we're studying!
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I had forgotten or not realised they only managed 17 patients. I had it in my head they did 27 which is bad enough. Add to that and some weren't well enough to do all the tests, and you have nothing.
I really feel for people who have been relying on this to bring good news. Such a let down. It's scandalous, cruel and deeply unethical to dangle promises for years which they know they can't fulfil.
I really feel for people who have been relying on this to bring good news. Such a let down. It's scandalous, cruel and deeply unethical to dangle promises for years which they know they can't fulfil.
We're surrounded by feckless grifters in white coats
Lou B Lou
Senior Member (Voting Rights)
Tweet - Hilary Johnson Journalist (Osler's Web)
"Those pushing for dx code for PEM? Check out Nath's comments on it: "It's a patient-defined term. Every person describes malaise differently--no good qualitative way to understand it. You have this alphabet soup, a potpourri of symptoms that will go with it."
Lou B Lou
Senior Member (Voting Rights)
Tweet, Louise Today:
"Nath bought into the deconditioning disinformation perpetrated by the Wessely School. I was more active in years 5-10 of ME than in years 1-5. Unable to sit up walk or write my own name much of the time years 1-5. Able to do that and more in years 5-10"
In fact I went from virtually unconscious/unable to move in months 6-12 - to able to walk a mile occasionally in year 7 (if I rested most of the time).
The deconditioning model is pure fiction - it's disgraceful that Nath bought into it. BTW I did not maintain my ability to walk distance at times since about year 9 - but have not gone back to the levels of illness of the very worse early years. Plus old age is intruding.
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I'm going to hold on commentary until I can see the study itself. What I can say is that, I've always been frustrated by the 5 year limit given how long it takes
1) to get a diagnosis
2) to accept/confirm that diagnosis
3) it was widely said to me that patients recover 3-5 year periods (and therefore why invest in research/studies)
I think it was floated at the time immune exhaustion was the reason, even though the evidence for that was weak. And a documented post-infectious onset isn't always available, since many people just get on with flu, etc.. and oh by the way...there's at least a chunk of people with me/cfs who can't point to an onset or point to a non-infectious stress.
1) to get a diagnosis
2) to accept/confirm that diagnosis
3) it was widely said to me that patients recover 3-5 year periods (and therefore why invest in research/studies)
I think it was floated at the time immune exhaustion was the reason, even though the evidence for that was weak. And a documented post-infectious onset isn't always available, since many people just get on with flu, etc.. and oh by the way...there's at least a chunk of people with me/cfs who can't point to an onset or point to a non-infectious stress.
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Andy
Retired committee member
So don't have a code for PEM because Nath can't get his head around how different patients might describe their experiences? I guess then we should remove the definitions of PEM from the various criteria based on the same reasoning - those pesky patients just refuse to describe their symptoms in the same way, darn it!!
cassava7
Senior Member (Voting Rights)
It is strange to hear Nath say this when the intramural study group itself had a qualitative article on PEM describing its various aspects published a couple of years ago.
Lou B Lou
Senior Member (Voting Rights)
Nath reflects so many doctors' inability to take on board the distinctive features of PEM despite the existence of objective measuring of PEM via 2 day CPET research (which most medics have never even heard of).
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