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

rvallee said:
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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I agree with you strongly. Most disabling or most burdensome symptoms would be better. Medicine has a long history of dismissing post-infectious illness. Perhaps more broadly, they dismiss illness that aren't likely to kill you.
 
NelliePledge said:
Spot on @rvallee these people need to have a tutorial on how ME/CFS affects people they need to see the Dialogues videos and Anils videos. Then keep talking about bothersome, less severe than LC etc etc
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They're very misinformed. Long Covid is a huge spectrum and symptoms can range from annoying to debilitating. ME (at least by IOM criteria) has a minimum severity, it's always quite debilitating.
 
Ohio State News: 'Finding a solution for long COVID, one cell type at a time'

'$15 million grant funds study of viral mechanisms, treatment strategies. The grant from the NIH - the largest of its kind funding infectious diseases research at Ohio State - will fund their five-year pursuit of definitive answers.."

'The new work funded by the NIH will extend the investigation beyond the lungs based on predictions that in response to the viral infection, caspase 11 has compounding effects in multiple cells: driving up inflammation in the body and brain, interfering with the immune response and leading to clots in small blood vessels.'

'Many of the affected cells being investigated are related to the immune response – both the innate response, the body’s first line of defense against any foreign invader, and the adaptive response, which is a later, specific response to a given pathogen.'

Amal Amer, professor of microbial infection and immunity in Ohio State’s College of Medicine and the contact principal investigator on the grant: "this is especially needed for long COVID – it may be in the brain, it may be in the muscles, it may be in anything and everything – and that’s an important aspect of the disease."

'The group also involves other experts from Ohio State, Nationwide Children’s Hospital and the University of Chicago.'

'Amer is an expert in innate immunity who has been studying the class of molecules called inflammasomes for years. She will lead studies of the role of caspase 11, which is an inflammasome-related enzyme, in causing inflammation in the brain..'

"..we have continuously worked together and published together on cutting-edge science,” she said. “And the NIH was convinced that this group is the one that can do this.”
 
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"Transitioning into a long-term project will teach us so much that we need to learn about the post-infectious complications for Covid, and ME/CFS, chronic Lyme disease, all of these chronic conditions"

I suspect there are people at the NIH that are apoplectic that she said "chronic Lyme disease." I hope that's an encouraging sign.

ETA: Of course another way to read those signs is that lumping all the contested and controversial - and potentially expensive - diseases together, even casually, may not bode well at all.
 
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Other than this stuff being talked about by the NIH director being significant, it's hard to take it seriously until there is real action matching them. It makes a strong record for the inevitable disappointment, for when facts actually start to matter.

It sounds sincere, but all I see is talk. The work being done so far has either been mediocre, or serves only to independently validate what was known for years and has been poo-pooed away with extreme prejudice. Which is very significant. Or would be, in a world where facts overrule feelings, where the scientific process matters more than hyping some BS pseudoscience that sounds too good to be true, definitely is, but that no one seems to care anyway.

It's the fact that there is still no appropriate reaction that doesn't inspire confidence. This is a major scandal. Top 10 in the history of medicine for sure. It should be getting a major reaction, chills down millions of spines from the knowledge of what they did. And it still barely gets a blip, everyone is just waiting to see where the chips fall, and if they don't align, I don't see more than the same few with a personal stake doing more than the bare minimum, then get bored and drop it entirely.

I very much look forward to being proven wrong. I just have a very long streak of being right about this going on...
 
9/6/24, The NIH Catalyst, by Michael Tabasko: 'The Autoantibody Hunters'

'From PANDAS to Long COVID, Defining and Treating Infection-associated Conditions That Aren't So Black and White'

Excerpts:

'Nath and Walitt now hope to launch a clinical trial to identify patients with long COVID and T-cell exhaustion and treat them with a PD-1 inhibitor, a checkpoint inhibitor drug sometimes used to treat cancer. According to Walitt, they hope to find out whether the treatment might help restore immune function and clear the viral material, perhaps having downstream effects on the central nervous system and other symptoms.'

“It's the intervention most open to scientifically testing the clinical impact of the observed immune exhaustion that we have right now,” he said.'

'Another trial underway is treating long COVID patients with IVIG, a nonspecific immunotherapy that delivers a concentrate of antibodies. “Some people have a dramatic response, and some people don’t,” said Walitt. “The idea is to understand who the responders are and who are not so that we can predict response and know who to give it to.”

'According to Nath, the present time is a golden opportunity to study these diseases. “We’ve made certain breakthroughs, but there is a lot that remains unknown about a whole host of diseases that look very similar phenotypically but have different names,” he said. “If you find a treatment for one of them, then you might just find a treatment for all of them. There’s room for specialists to really study them, apply their expertise, and make a real difference.”'

'Long COVID has been dominating the news. One theory on how long COVID perpetuates is that bits and pieces of the COVID virus—shards of RNA and proteins—remain in the body and continue to fuel a slow-burning immune response, contributing to inflammation and resulting in symptoms such as cognitive difficulties and fatigue.'

'To answer these questions, Walitt and Avindra Nath, NINDS clinical director and senior investigator at the Section of Infections of the Nervous System, are launching a new study to analyze biopsies from tissue all over the body in living individuals. They intend to compare healthy participants after recovering from COVID with individuals with long COVID and look for remnants of SARS-CoV-2 RNA or proteins.

'Data from the long COVID protocol have shown a dysregulation of antibody-producing B cells and infection-fighting T cells in some participants, and the investigators hope to determine whether some of that immune dysregulation might be due to the inability of some people to clear viral material.'
 
9/6/24, 'NIH Support for Fundamental Research'

'NIH Director Monica Bertagnolli presents on NIH support for fundamental research at the September FASEB Board meeting'

(Screenshots or short clips in thread here)

Bertagnolli: “…it appeared to share many clinical features of other post-infectious syndromes such as myalgic encephalomyelitis / chronic fatigue syndrome, but we had no way of clearly defining the condition with the rigor required to develop treatment approaches...”

“..it is very clear that Long COVID is a serious, now common illness..it’s not going away anytime soon. It causes great suffering and it will join other poorly understood post-infectious syndromes.."

“Those working to prevent and treat Long COVID are all acutely aware that we're unlikely to achieve successful treatment without much new research detailing the exact nature of the disease. We’re more or less still working in the dark - looking at many pieces of the puzzle without understanding the whole - as with other viral post-infectious conditions that have been described for more than a hundred years. We're hampered by something as basic as the inability to definitively identify live replication competent virus in specific human tissues - we need new diagnostics and a new understanding of basic pathobiology.."

"Although some common principles are beginning to emerge based on a study of known mechanisms of disease - the heuristic is helping out here a bit - and we're fortunate to have tissues from carefully clinically annotated RECOVER cases and a large clinical research infrastructure to draw upon for future studies, but Long COVID remains a a very important example of how ineffective we are when we lack the knowledge base and technological innovation provided by fundamental science that is directed at understanding the basic pathobiology of a disease.."

“…we have to have some focused programs, because to be perfectly honest, that's what Congress tells us to do. So we do have to meet as I said the full spectrum and tackle many other issues but I will say even in those areas the priority is always given to the investigator-initiated work - I think we try very diligently across all of the institutes and centers to put out challenges - here Long COVID's a challenge...but then see what the community gives us back rather than too directive.."
 
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Bertagnolli said:
we had no way of clearly defining the condition
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My annoyance at this framing of a problem of definition is on its way to blow a gasket.

It's not a problem of definition. There is no problem with definition. They mean the pathophysiology. They want to know what is the biological process. Because medicine is 99% about biology and physiology, the rest may as well be entirely irrelevant and this is the most common problem they face with having no plan B to account for it.

By pathophysiology they mean clear biological evidence, a biomarker and a test. But they avoid saying it because the default mode of medicine when this is lacking, at least when there are no objective signs, is to deny, dismiss and discriminate.

Really sick of all the word play. It's all politics all the damn time. It's not a problem of definition and it never was. Say it, damnit, or at least stop using dishonest words that hide the nature of the problem.
 
Amw66 said:
Mods please move of better thread
https://twitter.com/user/status/1846628298224554376


Urgent Action Needed: Demand NIH Fund ME/CFS Research Roadmap!

Sign here:
win.newmode.net/fundmeroadmap

I worked on this project for a year and not one dollar has been assigned to fund the roadmap so many people carefully and thoughtfully put their work into.

Please sign !
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Useful that there is both the petition for US signatories and a separate list for overseas signatories.
 
ME/CFS Alert, Episode 139: Interview with Dr. Walter Koroshetz, Director of NINDS

In this episode, Dr. Walter Koroshetz, director of the National Institute on Neurological Disorders and Stroke, speaks with Llewellyn King about the state of research on Myalgic Encephalomyeliti/Chronic Fatigue Syndrome.

Dr. Koroshetz, who is also co-chair of the National Institutes of Health's long COVID initiative, talks about where long COVID and ME/CFS overlap — and at what point long COVID can be considered ME/CFS.

He is enthusiastic about the critical role artificial intelligence can play in the search for therapies and cures for both of these diseases. But he cautions,“We need clean data sets” for ME/CFS, and there is data for 60 million people — people visits, samples, autopsy tissue — and “after two years, no one has a cure for long COVID yet.”

Dr. Koroshetz explains the National Institutes of Health procedure for awarding grants, and he hopes research on long COVID will bring more researchers into the study of ME/CFS.



https://twitter.com/user/status/1855728168403083568
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Koroshetz (on RECOVER) :"Let me just start off by saying that as one of the co-leads in that program, I went into it you know four or five years ago, with the idea that what we're going to be dealing with is ME/CFS. And that it's going to be a hard problem, and that we need to get pristine data..

"The truth of the matter is you know these years later nobody has a cure for Long COVID, there are now some clues - it's very similar to what we see in ME/CFS - so if you look at Dr. Nath's work in the Intramural Studies in people with ME/CFS, he did studies in people with Long COVID and he sees a big overlap and what we're seeing most people are seeing is evidence of chronic inflammation which is not unexpected that's we had thought about in ME/CFS - we have people have published papers where they see certain patterns, and that's also happened in ME/CFS - the stage we're at now is where we have to validate those patterns to see if they stick - many of them were done in small groups of people but now with RECOVER we have samples from thousands and thousands of people so we can have really powerful validation studies. We can bring in AI to look at this data and develop the results of the biosamples, the MRI imaging - you know what have you in RECOVER.

I would say, the thing about RECOVER is that most of the studies are showing that there's persistent virus somewhere in the body and it's not totally clear....Ian Lipkin spent a lot of time trying to understand if there's a persistent virus in people with ME/CFS and he was not able to find it but this is not easy you know this is not easy to find we may have to go back and look again to see which virus this this could be if there persistent virus again in ME/CFS but most of the studies are showing that persistent virus occur"

"Then the issue of if you have chronic inflammation, if you have chronic virus, why do you have fatigue and PEM? That's a you know that's a problem for Long COVID, it's a problem for ME/CFS. So the hope is that we get some answers to these kind of mechanistic questions from the RECOVER people that we can then apply to people with ME/CFS"

"This is not a rare event now in the general theme of infection leading to these kind of symptoms that persist- that affect your immune system and persist for years so we know what happens - now we got to figure out..."

"We have 400 different diseases in our portfolio, that the future really is based on the creativity that's coming in but we don't pay, we don't in general, unless Congress tells us, we don't we don't favor one disease over the other - we're trying to solve all these. None of them are good. We're trying to solve all these diseases we really rely on this creativity coming up and the problem in ME/CFS has been the same problem with people getting care for it - that the the medical community has not really gotten behind the effort to understand and treat people with ME/CFS. The research community has not got behind ME/CFS to put in the creative ideas like you need and we have some really good people but we don't, I don't know how many, but it's not a lot of people who put their career into ME/CFS."

"We need that to happen in ME/CFS and that I think been the big problem - we can't fund if people don't apply - we don't hardly get any applications in ME/CFS research - so we need the applications - the applications come when people get passionate about doing something about a disease and that's something the government, no matter how much money we put out, is not going to do it - it's like people want to do what they really feel passionate about.."

"The good news for ME/CFS is Long COVID completely changed the ball game so people can't say well there's no such thing as chronic post-infectious condition - they did that for years to patients - but they can't do that anymore - and so there you're right out in front and not only that but now you have primary care physicians who are seeing you know lots of Long COVID cases which there's lots of them and they look just like ME/CFS, so I think they're going to get better at that and then the big question for us, for you and I, is can we convert these Long COVID researchers to ME/CFS researchers but I think we have a golden opportunity to do that now we can't squander that - well there's a lot of activity in Long COVID -and at NINDS, we put out calls for grants to study Long COVID and the neurologic effects of Long COVID and you know those people are the people we hope are going to be studying the the ME/CFS cases and in our grants we encourage kind of mixing and looking at ME/CFS and Long COVID together because they're basically chronic infection associated conditions so we have an opportunity now to change things, we we got to make this work that we've got to convert the Long COVID research effort which is you know lots of money, hundreds and hundreds of people you know 15,000 people volunteered for these studies uh so it's an opportunity to make a difference."
 
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