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

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DokaGirl said:
It would be amazing if this depth of research was applied to ME.

But, wait a minute, in-depth research has been done by the NIH, but we're still waiting to see results. It's been almost 7 years so far - the study started in late 2016. The first publication is still many months to one year away, according to journalist Brian Vastag.
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I have this vague memory that someone somewhere said it would probably be published until the end of this year. But I cannot seem to find this after a quick search, so it is entirely possible that my brain is just making it up.
 
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Wyva said:
I have this vague memory that someone somewhere said it would probably be published until the end of this year. But I cannot seem to find this after a quick search, so it is entirely possible that my brain is just making it up.
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That would be great if we could look for the NIH publications on its intramural study to start in 6 months. I read the 6 months to a year estimate on a Health Rising interview with Brian Vastag.

:)
 
DokaGirl said:
That would be great if we could look for the NIH publications on its intramural study to start in 6 months. I read the 6 months to a year estimate on a Health Rising interview with Brian Vastag.

:)
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The message I got was the paper has been submitted for publication (some time in April/May). Which just means that it'll take anywhere from a couple of weeks (probably not since it's a big paper) up to roughly a year for it to be published from that time point onwards.

All subsequent intramural papers will be submitted for publication once the main paper has been published was the second thing I understood. So that could take another 2 years. However, they've already released one or two of those and I wouldn't be suprised if they'd at least upload to the Arvix in those cases or submit for publication once the first review round for the main paper has been passed.
 
EndME said:
The intramural study will be published in Nature Communications www.twitter.com/oslersweb/status/1722330356458693033.

To me that sounds like a confirmation that they didn't find much, or at least not as much as some patients are hoping for.
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Agreed that the journal doesn't indicate 'big findings' especially as Nath delayed the whole thing by not putting it in preprint in the first place. His (mistaken) reasoning (from the get go) was that he wanted it to be in a 'top journal'.
 
Braganca said:
What??

So 60% of the cohort in the intramural study who were rigorously screened for ME could exercise without problems? Only 20% reported mental fatigue? Again.. what?
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I don’t get this. The cohort supposedly comply with 3 different sets of criteria, but then the data shows they don’t? Really strange considering multiple 2-day CPET largely confirm exercise intolerance as measurable feature.
 
Braganca said:
“Kaplan: only 40% noted worsening of energy after cardiovascular exercise, 20% reported mental fatigue, etc."

What??

So 60% of the cohort in the intramural study who were rigorously screened for ME could exercise without problems? Only 20% reported mental fatigue? Again.. what?
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If that's true, they've seriously messed up their diagnoses. We were worried about Walitt who was put in charge, as he had a reputation of not believing ME is a physical disease and they invited Shorter to give a talk to the research team. Again I was concerned when they published their badly run PEM study with great fanfare and didn't seem to know the difference between daily fatiguability and delayed PEM.
 
Oh Lord, if that really is true after all this time and all of this hope they've built up...

Prusty eat your heart out!

No honestly this is absolutely dreadful if true. And the no pre prints thing seems ludicrous now either way.
 
I just cannot believe it, that Walitt was selected to work on this. No wonder they couldn't recruit.

What ammunition to the psychologists. Walitt was publishing fairly recently.

ME pedia
"In a 2015 paper on chemotherapy related cognitive dysfunction[4] co-authored by Walitt, fibromyalgia and chronic fatigue syndrome are referred to as somatoform illnesses, with their hallmark being a "...discordance between the severity of subjective experience and that of objective impairment...".

Walitt has also stated that "Fibromyalgia is closely allied with and often indistinguishable from neurasthenia" and goes on to claim that "Time brings clarity to confusing illnesses of the past, and we now recognize that hysteria, neurasthenia, and railway spine were almost always psychogenic disorders."[5]"
 
This group has probably already seen, but sharing if not.

Thread attached with some of Nath’s slides from yesterday. Thank you to the attendee that captured this and cascaded to the community.

"Overall hypothesis: "Post-Infectious ME/CFS is triggered by an infectious illness that results in immune mediated brain dysfunction”

 
Braganca said:
https://twitter.com/user/status/1722326845671059956


“Kaplan: only 40% noted worsening of energy after cardiovascular exercise, 20% reported mental fatigue, etc."

What??

So 60% of the cohort in the intramural study who were rigorously screened for ME could exercise without problems? Only 20% reported mental fatigue? Again.. what?
Click to expand...


Is there any possibility these percentages were referring to PwME as well as healthy controls???
 
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