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I really like Nath. I think he's the right person in the right place.

I'd really like to know why he's blocked from actually doing anything about it. What the hell is happening behind the scenes to create this impossible gridlock?

 

Many of us thought he sounded committed to trying to understand ME/CFS, too.

 

I have seen a lot of ME/CFS studies struggle with recruitment over the years.

As I said before, I think more people could put more effort into highlighting recruitment announcements online.
I can understand not wanting to promote fundraising for research but often people are recompensed to varying degrees when they take part in studies and sometimes will get their individual results which can be very interesting.

In this case, the criteria seemed to very strict.
I think I recall hearing something like 12** enquired which would be more than enough for most studies.

But I think they wanted laboratory evidence of an infection which for many people could be very hard to get and they seemed quick to exclude people in general.

With Covid, a lot more people have such evidence of an infection.

 

Oh dear, does no one recall the initial control groups?? What a total mind-fuck. It seemed to many the NIH never had a serious approach to investigating ME/CFS.

Don't even start me on the personnel.

 

[i also recall the initial control groups [per a supposedly mistakenly released draft at least] and true about the personnel selection. perhaps those will get official investigation at some point. the hiv/aids equivalent would have been to put aids deniers on the project, include a couple of diseases as control groups, and claim that one is a good control group because that disease is KNOWN to be caused by witchcraft. i think it was a version of lyme and fnd or so.]

but the clinical center is a valuable resource that m.e. needs and deserves. and it has to be done right.

do we have anything formally published? the last time we talked about a video or so, it was too confusing for me to figure out what the misdiagnosis rate was and why it was so high, or things like that. we, or i, didn't have a clear written presentation of the subject flow through the study. and that made the scant results hard to interpret. i cannot watch videos most of the time.

i'd like to have a better impression [in my limited knowledge] than that among the goals were to keep us quiet and perpetually hopeful that something useful is forthcoming [e.g. perhaps to not crash the gates like aids did], to faff around with anti-science [e.g. perhaps due to malevolence toward our population of unknown origin], and to provide implausible deniability [e.g. to make it look like they didn't particpate in teh attack on us]. i'd like to be wrong and i'd like lots and lots of subjects to participate in a solid study. i also don't want my ignorance here if any to dissuade such.

 

Merged thread

New science NIH report

Critical report on NIH. It’s long and I haven’t read it yet, but it seems to be making waves.

https://newscience.org/nih/

 

Summary here

https://twitter.com/user/status/1522285201786912768

 

https://www.statnews.com/2022/05/09...ncy-at-the-nih-it-hasnt-even-met-for-7-years/

“The panel was supposed to improve efficiency at the NIH. It hasn’t even met for 7 years”

 

Excessive metaphor alert

 

Koroshetz on Twitter.

"#NIH is committed to advancing research on myalgic encephalomyelitis/chronic fatigue syndrome #MECFS, a complex, debilitating disease that affects 836,000 to 2.5 million Americans who are without effective treatments. nih.gov/mecfs"

 

Brian Vastag says on Twitter that NIH is launching a small spin-off study of mitochondrial function in muscle tissue in ME/CFS

 

lol @ (the powerhouse of the cell)

This is the change they found:

The investigator is cancer researcher Paul Hwang. The discovery involves the gene WAVE3, which helps determine the shape of cells (their cytoskeleton). The amount of this gene product was altered (raised) in the ME/CFS cohort.​

 

NIH’s next ME/CFS telebriefing will be held on August 26, 2022 from 3:00 – 4:00 pm ET. The telebriefing will include updates from NIH on ME/CFS-related research activities and a presentation by Lily Chu, MD, MSHS, Vice President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), on highlights from the IACFS/ME 2022 Virtual Medical and Scientific Conference.

During the telebriefing, attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. We regret that we may not be able to respond to all questions that we receive, but we will try to answer as many as possible in the time allotted.

Please click the link below to join the webinar:

https://nih.zoomgov.com/j/1609957505


Or join by phone:

669 254 5252 US (toll free)

646 828 7666 US (toll free)

Meeting ID: 1609957505

 

Trans NIH ME/CFS Working group

About ME/CFS

https://www.nih.gov/mecfs/about-mecfs

 

New:
Transcript of NIH ME/CFS Advocacy Call - March 28, 2022
Main speaker: Dr Benjamin Natelson

Others: Dr Vicky Whittemore (NIH); Dr Walter Koroshetz (NINDS); Dr Joe Breen (NIAID); Dr Avi Nath (NIH inpatient study, etc.)

https://www.nih.gov/mecfs/nih-me/cfs-advocacy-call-march-28-2022

 

Moved post
Doesn't say much interesting. It seems that any mention of connection to ME is only ever made when it's the only topic being discussed. Otherwise it's still forbidden to say anything about it, can't mention the fact that medicine has been negligent for over a century, even though it's the reason LC is so disastrous.

As long as this message remains isolated, it means very little.


Studying Long COVID Might Help Others With Post-Viral Fatigue Ailments
Similarities between long COVID and ME/CFS motivate research

https://covid19.nih.gov/news-and-st...might-help-others-post-viral-fatigue-ailments