USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

(last one, sharing in case it wasn't back then)

8/14/20, Neurology Podcast: "Special Report: Avindra Nath Provides Updates on COVID-19.."

Nath: “So you're right, there are post-viral syndromes and then there are the acute ones. The way I like to divide it, I call them parainfectious manifestations. That means it occurs during the time of the viremia that is taking place. So there's still active viral replication. And then there are a whole host of neurological syndromes that are post-viral..."

Host: "...there's hundreds of reports out there about chronic symptoms that seem to be occurring after the recovery from acute COVID. Are there any hints of chronic neurologic concerns or ongoing virus that can't be cleared in otherwise recovered COVID patients?”

Nath: “So for neurologists, I think that is extremely important. It turns out that a lot of the long-term consequences that patients are complaining about are predominantly neurological in nature. And I think it would be a missed opportunity if we do not document them and study them and define what these are...I think it's very important for all of us to be aware of these so-called post-viral syndromes. And they can affect the entire nerve axis..."

"..and then lastly, there's this overlap between myalgic encephalomyelitis, or chronic fatigue syndrome. And that is a tough one, because currently there are lots of Facebook pages out there. There are thousands and thousands of individuals who are on these blog sites and online media complaining of long-term symptoms that overlap with this syndrome.”

“What they're predominantly complaining of is that their mentation is affected, they can't think clearly, they have sleep disturbances, extreme exercise and tolerance, and lots of autonomic symptoms...and the autonomic symptoms that they describe are also quite profound. Most of them will complain of tachycardia upon mild exercise or upon standing..."

"So these patients call themselves the long-haul COVID, meaning that it's been going on for a long time. And I think it's important for us as neurologists to really study these patients and try to figure out whether this is due to unmasking of some underlying comorbidity, or is this due to persistent infection that is ongoing, or is it an immune-mediated phenomenon, because some of these things could potentially be treatable.”

Host: “You know, you always hope that some good comes out of terrible things like a pandemic, and maybe it is an opportunity to study the myalgic encephalomyelitis and chronic fatigue syndromes in larger numbers."

Nath: "Yeah, actually, that's a really very important point. You know, these patients with chronic fatigue syndrome for years, they have symptoms, they go from doctor to doctor, and nobody really knows what to do about them. Really, they have a real disease....I've received a lot of emails from patients who are healthcare workers themselves...they were very highly functioning individuals...This is really devastating them."

"I think this is an unfortunate circumstance, but a great opportunity to maybe get to the bottom of this disease and try to figure out really what the underlying pathophysiology might be so that we can ultimately make a difference.”
 
I asked him:

“In this interview, you shared on what you feel are the 4 leading theories of causes for Long COVID. These theories you listed were: 1) viral persistence 2) autoimmunity 3) immune dysregulation 4) reaction of dormant viruses.

We know this first round of clinical trials in RECOVER was targeted mostly at symptomatic treatments aimed at providing relief (GET, pacing, light therapy, melatonin, video games). Can we expect the next round of clinical trials in RECOVER to be aimed more at disease modifying treatments to get at the underlying biology - like some at the 4 theories you mentioned?”

His answer to me shows that there are committees that review and decide what to trial in RECOVER, so he is saying they will review and decide (so nothing really new there, but agree it’s clearly a blah reply).
 
Gibbons said:
“One of the principles of RECOVER was to put the patients at the center of everything we do. Listening to them and their caregivers and reassuring them that this is a new post-viral disorder, that it is real and not in their heads. Patients have been involved from the beginning of the initiative. We want to be sure patients are developing the protocol with researchers.”
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All reports from patients who tried to, are or have been involved has been the exact opposite, that their input has been entirely ignored and that they were there clearly for token representation. And most prior expertise has been ignored as well. Researchers are simply grabbing their share of the very large pot, regardless of whether they have anything to contribute. Everything about us, in secret, behind closed doors.

But of course if there's anything that defines the dumpster fire of medicine's handling of chronic illness, it's a complete disconnect between lived reality and what professionals perceive, or pretend to. But as usual only the professionals write down what happened, whether it bears any resemblance to what actually happened or not.

What's weird is that they say it because it sounds nice, but don't seem to think about why that is. The idea is reflexively rejected, even though they never achieve anything, simply because they can pretend to and convince themselves of it. But they'll boast about it anyway. Like polluting companies with some BS "green" corporate initiative, a fraction of how much they spend lobbying to prevent serious policies from being enacted.
 
EndME said:
The quotes from the interview sound very sensible and it's the same thing we've heard for years, but looking at the above quotes it seems like an interview talking place in an entirely different reality. If those running RECOVER believe in the above things why are they trialling exercise, light therapy and melatonin? Is that how you resolve viral persistence/autoimmunity/immune dysregulation/reaction of dormant viruses? I would say: For every complex problem there is an easy "solution" that is wrong.
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It also doesn't reconcile with the fact that for decades this has been forcefully rejected despite millions reporting this very problem and all the evidence pointing in that direction.

The entire modern alternative paradigm was literally created as a rejection of this very thing. And it's as if none of this happened, it's meekly acknowledge but with zero context, a worst-of-both-worlds where there is a muted "yeah, I guess this is true" but absolutely none of the implications are considered.

They seem to be waiting to see where the chips fall, where if failure is accepted yet again, they'll have this words-without-action to point to as having tried, and if it succeeds, they'll do the same as if not following on the words, ignoring the entire giant context here, is of no concern. There is a very obvious expectation that this is a completely accountability-free issue.

Because they keep talking about how this is so big and unprecedented, but from estimated numbers, there is at least an equal number of sufferers going back half a century, and even more going further. And to hell with the lies about how they never knew about what pathogen, this is horseshit.

But yet again we just don't exist, it's all detached from reality, as if no one had anything to do with it. No one takes responsibility either way.
 
Dakota15 said:
Nath: “So for neurologists, I think that is extremely important. It turns out that a lot of the long-term consequences that patients are complaining about are predominantly neurological in nature. And I think it would be a missed opportunity if we do not document them and study them and define what these are...I think it's very important for all of us to be aware of these so-called post-viral syndromes. And they can affect the entire nerve axis..."

"..and then lastly, there's this overlap between myalgic encephalomyelitis, or chronic fatigue syndrome. And that is a tough one, because currently there are lots of Facebook pages out there. There are thousands and thousands of individuals who are on these blog sites and online media complaining of long-term symptoms that overlap with this syndrome.”
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And the fact that ME has been classified as a neurological illness, for which neurology has completely dropped the ball, is no one's fault, apparently. Just a small giant error of choice that no one is responsible for, because for all that those are the facts, you'd have trouble filling a bus with neurologists who accept those basic facts.

Still stuck with Freud and all the usual nonsense about functional this and anxiety that. This profession is seriously deranged at times, so much power with zero responsibility and even less accountability.
 
It’s probably some combination of RECOVER Clinical Trial Steering Committee, Observational Consortium Steering Committee (OCSC) & Executive Committee Leaders that are all listed online (and maybe Office of Director [OD] with NIH Director after the strategizing efforts for RECOVER were declared to be moving there at the ACD in May)

But yeah calling them experts is a whole different conversation (I am also not assured)
 
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(Last one today, not to overdue)

6/20/22, Neurology Podcast: “NINDS's Mission & Clinical Neurology with Walter Koroshetz”

“Certainly with regard to COVID, NIH has really been very nimble and jumped onto COVID very quickly. I spent most of my time working on acute treatments for COVID over the last two years, but now I'm working heavily on what we call the post-acute sequelae of COVID, which includes a whole bunch of neurological symptoms, from sleep disorders to pain, to trouble with concentration and memory, autonomic dysfunction. So that's an area now that we're really expanding in.

But again, it's not a field that a lot of neurologists have specialized in, so we really need people to come in to work on this project called the RECOVER Project for post-COVID.”
 
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Dakota15 said:
(quickly sharing for tomorrow)

"The NIH Office of Science Policy will host a listening session on strategies for engaging the public as partners in clinical research. July 17 1:00 – 2:30 p.m. ET."

You can register below, and can provide public comments.

https://partnersinresearch.nih.gov/...9wP0pnvjpEcsLJXEKY_aem_GcYGOxSMcIoA7agjv6NxaQ


Agenda: https://osp.od.nih.gov/wp-content/uploads/2024/07/ENGAGE_Listening_Session_Agenda_7.17.2024.pdf
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Minor correction for the agenda link: (it has underscore characters, not dots)

https://osp.od.nih.gov/wp-content/uploads/2024/07/ENGAGE_Listening_Session_Agenda_7_17_2024.pdf
 
Dakota15 said:
(quickly sharing for tomorrow)

"The NIH Office of Science Policy will host a listening session on strategies for engaging the public as partners in clinical research. July 17 1:00 – 2:30 p.m. ET."

You can register below, and can provide public comments.

https://partnersinresearch.nih.gov/...9wP0pnvjpEcsLJXEKY_aem_GcYGOxSMcIoA7agjv6NxaQ


Agenda: https://osp.od.nih.gov/wp-content/uploads/2024/07/ENGAGE_Listening_Session_Agenda_7.17.2024.pdf
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Available to watch now: https://videocast.nih.gov/watch=54978

@Cybergreen91 spoke at 59:03, here is a transcript:

"My name is Scott Daniska, and I have experience both as a patient and a researcher. I've conducted research through academia, industry, and government programs, as well as seen hundreds of doctors as a patient and spoken to thousands of other patients over the course of eight years.

In my experience, patients have known more about these illnesses than the doctors that treat them. Doctors rarely ever read new publications, and they've become a barrier to medical access. Research coordination with patients is absolutely critical to get anywhere in terms of improving quality of life.

We have researchers so lost that they're researching conditions such as ME/CFS, fibromyalgia, and multiple chemical sensitivity as if they're psychological diseases. But all you need to do is talk to any of these patients out there that have these conditions, and you'll find out very quickly they're not.

We cannot afford to fund research that does not have a consistent focus on improving patient quality of life anymore. In academia, it's frequently the case to learn for the sake of learning. However, 60% of our adult population has at least one chronic illness, and we're near the breaking point of society and our economy. If we don't prioritize novel treatment development and patient outcomes, our situation will soon become catastrophic as chronic illness cases continue to rise.

Advocacy groups are not an ideal form of communication. They're the middleman and often work collectively for the vision of only one or a couple of people. To get the best representation, you need to speak to a variety of patients directly.

I propose that there are two types of patients that work with researchers:
1. A lay group that represents the patient population as a whole
2. Patients with a technical background or understanding for grant reviewing

I propose that for feedback from the community, we also have something like a live chat such as Discord or Slack where patients can post articles, theories, and photos to researchers for crowdsourcing ideas, better understanding symptoms, and having a direct line of communication with researchers. This is better than trying to bombard research offices and every LinkedIn profile and email address they can find on the internet.

Additionally, there must be a strategy for including the severe patient population. Without that, researchers aren't aware of how serious these conditions are, and you end up with NIH researchers like Dr. Nath who made a comment that ME/CFS patients aren't so severe.

Research results of screening tests should be made available to patients. Clinical trials typically withhold this information; however, this should be presented to the patient after the study has concluded. These patients sacrifice a tremendous amount of time, energy, and literally blood to provide these samples, and they need this information to understand their own body chemistry in a way that doesn't rack up more medical bills for people who have no income.

The consumer reviewer program run by the Department of Defense is great. It made a dramatic impact in my experience with the rest of the review board, and this program should be expanded to all of NIH. However, we need to limit participation to patients with some degree of scientific literacy in order to get the most out of informative responses. One of the consumer reviewers I worked with didn't have a technical background, so we couldn't speak on the topic being reviewed.

Lastly, I want to say that patients are so desperate for answers, many would rather die than live with a chronic illness. To that end, I know of an internet group composed of many people with chronic illnesses that are interested in the science of it and trialing experimental treatments. They pool their money together, sometimes north of $100,000 per order, and have experimental drugs that you've never even heard of manufactured in China, repackaged in supplement bottles, and distributed to members across the US.

Patients will not wait for answers to come, and some of the clinical trials I've seen lately, including a fiber supplement and adjustment of sleep cycles, isn't going to cut it. Patients have a wealth of information that could vastly accelerate the pace of research, and our researchers need to hear it.

That's it. Thank you."
 
Many thanks to NIH OSP & CISCRP for allowing me to provide my public comment at this week’s 'Virtual Webinar & Listening Session on Clinical Research Engagement’ (time stamp is from 20:25 - 23:20, if interested in viewing).

Below is my transcript, as we were asked to stay under 3 minutes. As I was the first speaker, the timer started faster than anticipated, in the speaking portion I had to omit some portions for time (as I wasn’t sure if it would immediately stop when the timer expired, with future speakers I saw that they were okay with going past the time clock, but alas).

After the meeting ended, the Associate Director for Science Policy & Director of the Office of Science Policy (Lyric Jorgenson) who was on this panel representing NIH OSP, reached out to me and shared that she wanted to share my transcript to the RECOVER team and NIH leadership, so I passed that along.

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Dakota15 said:
After the meeting ended, the Associate Director for Science Policy & Director of the Office of Science Policy (Lyric Jorgenson) who was on this panel representing NIH OSP, reached out to me and shared that she wanted to share my transcript to the RECOVER team and NIH leadership, so I passed that along.
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That's awesome, well done!

Edit: I hope next time they don't make the timer enormous and the video feeds tiny again.
 
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I shared my transcript from last week’s NIH OSP webinar to leaders running RECOVER over the weekend, and to various NIH leaders. Sharing this reply from Koroshetz:

“Nicely stated. Plan for stage 2 trials to work off of the theories that have been published on the biologic underpinnings. Still thin ice though. In the first stage with only the viral persistence and autoimmune data we stuck to Paxlovid and IVIG. The other trials were attempts to get some help for the symptoms that were most bothersome to the subjects we enrolled in the cohort study of 15,000.”
 
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Ugh. The issue is not bothersome symptoms. The issue is disabling illness. It's going to take a long time before this minimizing language is rooted out, it affects everything they do. They may argue otherwise, but constantly using minimizing language frames the entire efforts and affects how they think about the whole thing.

I wish I only had 'most bothersome symptoms'.
 
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