Webinar: USA: National Academy of Medicine: New Definition Proposed for Long COVID, June 11, 2024, 1 PM EDT

[I think this is different from the National Academies long Covid report that came out on June 6?]


From: International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) <iacfsmeorg+gmail.com@growthzonemail.com>
Sent: Thursday, June 6, 2024

Subject: June 11: Webinar - USA National Academy of Medicine Long COVID Definition



USA National Academy of Medicine Webinar

New Definition Proposed for Long COVID

June 11, 2024 1 PM EDT (New York City)

(Click here for date/ time in your area)





For information about this project: Click here.


To watch the Webinar live, click here.


On June 11 at 1 PM EDT (New York City time), the United States National Academy of Medicine (NAM) will be hosting a webinar proposing a new definition for Long COVID.


The US government requested that the NAM convene a committee to examine and update existing US definitions based on the latest scientific evidence, testimony from medical and scientific professionals, and input from patients and the public. The webinar will be recorded as well for later viewing. If adopted, the new definition will impact clinical care, research, public health surveillance, and access to services/ support for long COVID patients.

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The full report as well as supporting materials (summary, infographics, etc.) will be released on June 11.


IACFS/ME Vice President Lily Chu, MD, MSHS, is a member of the Committee creating the new definition. Dr. Chu was involved in creating the 2014 NAM ME/CFS criteria and was invited to join this Committee based on her past experience. Similar to ME/CFS, long COVID is an infection-triggered chronic, complex condition presenting with heterogeneous symptoms. Currently, there is no test to diagnose long COVID accurately. Furthermore, many people affected by long COVID experience symptoms similar to ME/CFS and up to 50% may also qualify for ME/CFS criteria.


All NAM Committee members are expected to think independently and speak for themselves, not their organizations. Thus, the report itself and the thoughts and opinions expressed by Dr. Chu within this project do not necessarily represent the positions of the IACFS/ME Board or IACFS/ME.


Look out for Dr. Chu's post on our LinkedIn website in late June highlighting aspects of the report!

This email was sent on behalf of International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) located at ATTN: Dr. Fred Friedberg, IACFS/ME, P.O. Box 583, Stony Brook, NY 11790.

 

Yes @Dolphin - this project is different from the one whose report was released this week.

 

Materials related to the definition are linked to on this page
https://www.nationalacademies.org/o...-columns-b4067691-399a-4ca6-a6e8-3cecd0a695de
It is disturbing to me that there are no minimum symptoms required for diagnosis...

 

A few screenshots, from:

 

Off Twitter thread of four posts with images:
https://threadreaderapp.com/thread/1800580535569555952.html

 

KQED: 'National Academies Pushes for New Definition of Long COVID'

'Long COVID afflicts an estimated 17 million Americans. We’ll talk about the latest Long COVID research and hear your experiences'

Guests: Dr. Linda Geng, Stanford Long COVID Collaborative

Dr. Linda Geng: "There wasn't a great consensus. Because of this nebulous concept of what is Long COVID, it stifles progress in a lot of ways..people then may not receive care. This is a great step forward to create a framework, and it will increase awareness and improve diagnosis, and care access for patients as well. It also legitimizes the condition. This is important - when NASEM puts out a report, people pay attention. People take it seriously. And that's what we need. We need for the public, for healthcare professionals, researchers, scientists, health agencies, policymakers to take it seriously."

"There's also, historically, stigmatization, when the medical community doesn't understand the condition..."

"There's some leading ideas about what may be causing Long COVID. Some of those biological mechanisms include chronic inflammation, immune dysregulation, persistent viral particles, microbiome changes...multiple pathways may be at play..."

Host: "Will this help lift the stigma around people with Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis? People with ME/CFS prior to the COVID pandemic have had hard getting treated or even treated like they have a real disease. Maybe a silver lining around the pandemic is research on Long COVID, which could help everyone with ME/CFS?"

Dr. Geng: "I think that's an excellent question, it's an important area of overlap and synergy. Historically, it's been a neglected area of medicine. Infectious associated chronic conditions such as Myalgic Encephalomyelitis, or ME/CFS..and because of that, there's been a lack of progress in terms of research and treatments. It's my hope that with studying Long COVID, both in attention it's getting now and what we learn from it, will provide insights and treatments for these other conditions. It's important to now recognize that Long COVID has overlap with these, meaning it encompasses them - based on the new National Academy definition - one can have both Long COVID and ME/CFS...they're not mutually exclusive. So, you can have Long COVID with ME/CFS, or ME/CFS with Long COVID.."

"In terms of on the ground, in clinical practice, we certainly still have significant demand for Long COVID..."

(patient calling in) "I developed in Long COVID in April 2020, after a mild infection. It's really hard for me to talk...I'm shaking listening to this program. I've had Long COVID for 49 months. So many of us with mild infections have been dismissed, ignored and gaslighted..it was a nightmare then, it's a nightmare now. I always thought my condition would stabilize & somehow I would miraculously get better. In the last 6 months, my cognitive dysfunction has worsened so badly. I can't drive anymore, I had to sell my car last week. I can't do anything. There's no help...I'm so desperate.."

Dr. Geng: "That's the urgency here. Millions of people are suffering. This continues to be a healthcare crisis. We really need to push forward on those research clinical trials. Those rigorously designed trials to help us provide answers and evidence-based treatments so that FDA can approve, these safe and effective avenues for therapy."

"I'm optimistic because there's a lot of efforts underway right now, especially with the National Academy Report, it's going to get attention from the public, from the government, from the health agencies, and that's what we need...we need for it to be taken seriously and we need efforts underway. From research to expanding clinical access...I'm excited that the collective effort putting forward to helping resolve this. There's still much work to be done and therapies to be had."

 

This is fine but really all it does is slap a seal of approval on the rough description that was mostly fleshed out in the very first Body Politic paper.

It basically validates everything the LC patient community, and us before them, have been saying. Basically take the first year of the LC sub-reddit or what we said here and it's all there, all of it.

Which is great, but that's 4 years wasted because too many people rejected reality and substituted their own, and of course all of them seem to stubbornly stick to their denial. Consensus shouldn't be about the middle ground between what's true and false.

It also pretty much exactly amounts to... chronic illness. The discriminated vilified category of illness out of which psychosomatic medicine has been built out of. Even though, true story, we were right all along. So what does that mean for that specialty-that-isn't-a-specialty and hasn't delivered a damn thing in over a century? It just keeps feasting on lives without end?

This kind of feels like being rendered a verdict of innocence after years of imprisonment, but we're still stuck in prison, and there's no compensation planned or even imagined, or much consideration about how to make sure the harm ends and never happens again, even though it turns out that it was all based on lies or, at best, ignorance.

Being right should matter. In general. Even more in medicine. Why doesn't it matter?

 

The definition seems to be overly inclusive. It does not require any particular symptom, does not require any level of functional disability or impact of symptoms on activity levels, does not require proof of Sars-Cov-2, etc. It is just a list of 'can' and 'may'. Almost everything can fit that definition.

You can have a cough or new itch between your toes that is not debilitating and started weeks after an infection from which you fully recovered and that was never confirmed to be Sars-Cov-2. As long as that cough or itch is present for 3 months, it could fit the definition of Long Covid.

I'm afraid such a broad definition is to the detriment of people who developed serious debility following COVID-19.

 

It looks completely meaningless to be honest, if it includes lupus, MCAS, any symptom, any time after Covid... Everyone who is ill for three months has it.

I doubt the National Academy of Medicine is a particularly good organisation to be producing a useful definition.

 

It's a recognition that COVID can cause a huge number of health issues, some of which are syndromes or even single symptoms. Which includes some discriminated and denied ones, a very awkward and liable problem given decades of psychosomatic fairy tales and systemic negligence.

Not significantly different than acknowledging that car accidents can cause all sorts of problems that have to do when meat meets hard objects at high speed, not just one thing.

So it's more of a recognition of reality, which given how low the bar is, is some progress, but I don't see how it can be a definition in itself. The individual parts have to be recognized. Fever has nothing to do with POTS, and yet clearly COVID, and other pathogens, can do both and more. Same as if there were no code for a never-before-seen type of injury from a car accident, MDs shouldn't spend time dithering whether it's even possible.

Frankly a broad definition is not a problem. The fundamental problem is the denial of reality, and the piecemeal denial of some major individual consequences. Which is actually a thing when it comes to car accidents as well, considering how controversial some injuries are, how they are denied for the usual reason: we don't know why or how.

So not really a definition, but it's still groundbreaking, but that's just because the bar is so freaking low that anything that achieves ground level from that deep is, technically, groundbreaking.

But there has to be a recognition from this that it has been described close enough to this within months, 4 years ago, and that it reveals just how much medicine has screwed up when it comes to the freaking germ theory of disease.

It's absurd, but medical progress is more at a cultural pace than a technical one. Some bits progress thanks to technology, but the foundations only move forward along with social progress, which tends to be on a generational scale, when dinosaurs die out. And the damn biopsychosauruses can't do that soon enough.

 

Sharing a local report on the NASEM work (Minneapolis, MN).

KSTP 5 News: “National Academies’ long COVID definition gives patients hope”

“I’m really hoping that the change in this will give us some better options for treatments, help, even just guidance..” said Jesse Atwood, a long COVID sufferer from Shakopee

“I couldn’t get the strength back that I had, I couldn’t get back to the endurance I used to have, it felt like being pushed down more and more,” said Atwood. “They said to me, ‘This is long COVID’.” The 45-year-old father still deals with brain fog...'

'Some days, he can’t walk more than 50 feet without becoming exhausted...' '“It’s crushing,” said Atwood, who emphasizes long COVID is a legitimate diagnosis. “There are people who have lost almost everything and are just struggling to get back from it.”