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

Moved posts

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.

 

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.

 

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.

 

Brian Vastag today:

“The [ME/CFS] inpatient study at NIH I participated in (2017/18) is finally under review at a journal (I don't know which) and I am hopeful it sparks an influx of research.”

https://sciencemastodon.com/@brianvastag/110787715439005583

 

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.

 

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'.

 

It seems that the NIH is favoring the "persistent antigen" hypothesis.

https://twitter.com/user/status/1722326087428948341


Does this mean autoimmunity, a persistent infection? What else could it mean?

 

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?

 

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.

 

As expected, they’ve found nothing and they’ve ended up in an open access journal.

 

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.

 

So we've been waiting **All those years** for That??

And yes, we did warn and warn about Walitt etc.

 

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”

https://twitter.com/user/status/1722639813424148599

 

Isn't it interesting that out of their 25 healthy controls, only after the third round of screening did they discover that one had MS, one had early-onset dementia and one had meningitis?

 

Is anyone really surprised?

 

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

 

I am genuinely surprised yes. I've been following ME research closely for 3 years and I'm genuinely surprised. And gutted. Maybe it'll still be something of note but I doubt it now.

 

Maybe..? I just looked at @Dakota15’s screenshots of their presentation and don’t see a reference to these numbers. I wonder if anyone who was there could clarify.