Event: NASEM: Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop

Sly Saint · Feb 18, 2023

Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors
The National Academies of Sciences, Engineering, and Medicine
The two-day event will be held June 29 and 30 in Washington DC. You can also attend virtually.

A number of chronic illnesses, from persistent Lyme disease to long COVID, have been associated with prior infectious disease. However, the pathogenesis mechanisms and link between infection and long-lasting symptoms remain poorly understood, leading to limited treatment options for the often debilitating symptoms of infection-associated chronic illnesses. This workshop aims to bring together clinicians, researchers, and other stakeholders to examine common biological and clinical factors associated with these chronic illnesses, discuss potential strategies to treat or prevent disease progression, and increase collaboration among stakeholders to build a community of shared priorities that can enhance patient care.
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article (has all links):
https://www.lymedisease.org/nasem-long-haul-diseases/

NASEM website:
https://www.nationalacademies.org/o...al-and-biological-factors#sectionProjectScope

Andy · Feb 18, 2023

Organising committee, https://www.nationalacademies.org/o...nical-and-biological-factors#sectionCommittee

CO-CHAIR
Timothy Coetzee

CO-CHAIR
Timothy Endy

MEMBER
Brian Fallon

MEMBER
Lorraine Johnson

MEMBER
Avindra Nath

MEMBER
Melissa Nolan

MEMBER
Amy Proal

MEMBER
Peter Rowe

ahimsa · Mar 18, 2023

Description from the NASEM website:

NASEM website said:

The current concern for “long COVID” underscores an increasing recognition of chronic illnesses that appear to arise from infectious diseases. This overlooked, growing public health problem often includes a patient history of infection by viral or bacterial pathogens followed by long-lasting and often debilitating symptoms including severe fatigue, cognitive impairment, and multi-organ dysfunction. Examples of infection-associated chronic illnesses include:

Long COVID or post-acute sequelae of COVID-19: Between 10 to 30% of patients infected with SARS-CoV-2 develop chronic symptoms that lead to a diagnosis of long COVID. This estimation translates to a disease burden of between 7.7 million and 23 million patients who will be living with long COVID by February 2022.

Myalgic encephalomyelitis/chronic fatigue disease (ME/CFS): ME/CFS onset is often associated with a prior, unidentified infectious episode. Approximately 1.7 to 3.3 million patients in the U.S. are diagnosed with ME/CFS and experience chronic, multi-organ symptoms.

Persistent or post-treatment Lyme disease: Between 10-20% of Lyme disease patients develop persistent and debilitating symptoms after standard antibiotic treatment There are approximately 2 million patients in the U.S. living with persistent or post-treatment Lyme disease syndrome.

Multiple sclerosis: A strong association of multiple sclerosis with Epstein-Barr virus infection was recently reported. In the US, more than 700,000 patients are living with multiple sclerosis.

In addition to the debilitating physical impact on patients, chronic illnesses present broader societal impacts. For example, between 31-70% of COVID patients remain absent from work after the acute phase of the disease and long COVID may be responsible for 1.6 million fewer full-time workers in the U.S. labor market. In the United Kingdom, an estimated economic loss of 32.2 billion pounds over 10 years will be attributable to permanent injury from COVID-19 in adults, 92% of which may be due to long COVID.

Given the commonality in chronic symptoms among long COVID, persistent Lyme disease syndrome, ME/CFS, multiple sclerosis and other conditions, it is not surprising to find similarities in the leading hypotheses for the explanation of these illnesses; e.g., pathogen or antigen persistence, immune response dysregulation, altered neurologic function, and altered microbiome composition and activity. Researchers studying different infection-associated chronic illnesses face common challenges in identifying disease biomarkers and developing diagnostics and therapeutic options.
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ahimsa · Jun 10, 2023

I noticed that this NASEM workshop is listed in Solve ME's calendar of events:

https://solvecfs.org/event/nasem-hosts-chronic-illness-workshop-with-key-me-cfs-voices/

Solstice · Jul 7, 2023

Merged thread

“Words matter.” A new way of thinking about long-haul diseases.

“Infection-associated chronic illness” sounds like a mouthful.

But using that name has turned out to be a crucial first step in getting scientists, health officials, doctors, patients, and the public at large to think differently about ailments that can keep people sick for years—with few or no options for getting better.

For decades, people who remained ill after contracting Lyme disease, multiple sclerosis, ME/CFS and other poorly understood chronic conditions typically found themselves shunted aside by the medical establishment—often told they weren’t even sick. Federal support for researching better diagnostics and treatments for these disorders (or sometimes even acknowledging their existence) was minimal at best.

Shifting the paradigm
Fast-forward to last week. The National Academies of Sciences, Engineering, and Medicine held a paradigm-shifting event in Washington DC titled “Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors.”

It brought together high-level health officials, prominent researchers, and knowledgeable patient advocates from around the country. Their shared goal was to find a way to work collaboratively for the benefit of all these “long haul” patients.

The presentations were enlightening, inspiring and immensely gratifying. As chronic illness author Meghan O’Rourke highlighted in her opening remarks, “When I was very sick, I really did lie in my bed and wish that someday a group of scientists might come together to take interest in the plight of all of us who live with infection-associated illness.”
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https://www.lymedisease.org/new-way-of-thinking-long-haul/

It's about possibly a new way of working together the article. My mind went to bits after my dads birthday yesterday so this is the best I can do right now on opening this discussion. I thought it possibly very interesting but I'm not registering much at the moment. Maybe someone else can make some sense of it and give the topic the opening it deserves if they'd like, I won't mind.

Solstice · Jul 7, 2023

Thanks mods.

ahimsa · Jul 8, 2023

This link goes to a list of meeting materials (agenda plus PDFs with presentations):

https://www.nationalacademies.org/e...-and-biological-factors#sectionEventMaterials

I think this is new info. I don't believe these links were posted before the meeting happened but I may have missed it earlier.

duncan · Jul 10, 2023

On paper, an NIH division dedicated to examining chronic infectious disease sounds appealing. Apparently it has the support of several people who have my support, e.g., Lorraine Johnson and Dorothy Leland. The whole safety in numbers thing resonates with me, for sure.

I'm curious as to how the politics would play out. Would the same people with the same embedded interests lead each respective infection's department? Who would take the lead? To avoid some of the political fallout, could a non-infectious disease colleague get the nod? What discipline spans the breadth and would seem disinterested in any specific outcome?

Bets?

Solstice · Jul 10, 2023

duncan said: ↑

On paper, an NIH division dedicated to examining chronic infectious disease sounds appealing. Apparently it has the support of several people who have my support, e.g., Lorraine Johnson and Dorothy Leland. The whole safety in numbers thing resonates with me, for sure.

I'm curious as to how the politics would play out. Would the same people with the same embedded interests lead each respective infection's department? Who would take the lead? To avoid some of the political fallout, could a non-infectious disease colleague get the nod? What discipline spans the breadth and would seem disinterested in any specific outcome?

Bets?
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No bets from me, but I think this get together was organized by some leading foundations in MS, ME, Lyme and LC. I thought Solve was involved for example. If organizations like that get a big say in proceedings I'm pretty confident it would be very good news for us. Like you say though, there's possibly politics within NIH which might be a bigger factor.

Sly Saint · Jul 14, 2023

Watch replay of NASEM conference on long-haul diseases now

You can now watch the video replay of the recent National Academies of Sciences, Engineering, and Medicine workshop on “long haul” illnesses such as long COVID, persistent Lyme disease, multiple sclerosis and ME/CFS.

Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors was a two-day event, bringing together researchers, health officials, and patient advocates.

The recordings are broken up into 11 segments. See below each one for the list of who is speaking during that segment.
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https://www.lymedisease.org/nasem-iaci-workshop-videos/

ahimsa · Jul 15, 2023

Just FYI, recordings of the 2 day event are also available on the NASEM website:

https://www.nationalacademies.org/e...-columns-aca329c4-4d96-4ce3-8d56-61ec1480b006

There's a video playlist with 11 videos.

Meeting materials, which include the agenda and links for all the presentations, are listed just below these videos.

Dolphin · Aug 28, 2023

The National Academies of Science, Engineering and Medicine (NASEM) recently held a workshop that featured talks from PolyBio-supported scientists studying #LongCovid & #ME/CFS. More on the workshop (and a link to the talk videos) here:

https://polybio.org/nasem-workshop-features-research-from-polybio-supported-investigators/

https://twitter.com/user/status/1696143128384737485

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Event: NASEM: Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop

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