USA: News from Solve ME

Two upcoming webinars by Solve ME:
2) Probing Functional Autoantibodies in Patients with ME/CFS

Thursday, July 31
12 PM Pacific / 3 PM Eastern

Webinar Registration
(link can display time for your time zone)

Description:
Last week, we hosted @VirusesImmunity to discuss her Catalyst Award-winning study, “Probing Functional Autoantibodies in Patients with #MECFS."

She shared how her work lays the groundwork for targeted treatment & advancing diagnostic tools. Watch here:
 
(Only for people in the US I believe)
From Solve ME:

The unhide® + Solve Together Unified Platform is here! The Unified Platform is a digital health platform built by patients for patients.

By participating, you can:

- Track your symptoms
- Connect your smartwatch
- View your health patterns over time
- Download symptom reports to share with providers
- Virtually connect to research studies

Be part of the solution – Join the Unified platform today.

www.unhidenow.org

Brain Inflammation Collaborative
 
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Results From the RECOVER-Adult Study: How Social Challenges Affect Risk of Developing Long Covid
Solve ME said:
It is known that people’s demographics and health factors affect their risk of getting Long COVID. For example, the risk of Long COVID is greater for women than for men, and greater for people with cardiovascular disease or diabetes than for people without.

But how social factors affect the risk for Long COVID was not well understood. Social factors are the conditions in which people live: their access to education; access to health care; economic means; level of community support; and neighborhood disadvantage (e.g., neighborhood deprivation or crowdedness). Studying almost 4,000 adults participating in the RECOVER-Adult cohort, the researchers here asked how social factors affect Long COVID risk.

They found all assessed social factors significantly affected the risk of developing Long COVID. People who skipped medical care because they could not afford it were almost three times as likely to develop Long COVID as people who did not. People with either financial or food hardships were more than twice as likely to develop Long COVID as people without these hardships.

People who experienced medical discrimination or who lost insurance during the pandemic were more than twice as likely to develop Long COVID as people who did not. And people with poor social support were almost twice as likely to develop Long COVID as people with such support.
 
NIH RECOVER Study Analyzes Electronic Health Records to Estimate Long Covid Incidence
Solve ME said:
Dr. Lorna Thorpe, a professor of population health at the New York University School of Medicine, and Dr. Richard Moggitt, a professor of biomedical informatics at the Emory University School of Medicine, recently led a study to measure the incidence of Long Covid among adults and children by using electronic health records.

Their research team found that for every 20 adults with COVID, between 2 and 5 developed Long Covid. And for every 25 children with COVID, 1 developed Long Covid. The incidence of Long Covid was higher for women than for men; for people hospitalized for COVID than for people who were not; and for people with more pre-existing conditions. Incidence was also higher for adults older than 65 years (than for younger adults); and for children aged 12 though 17 years (than for younger children). Long Covid incidence spiked in the months after each surge of a new SARS-CoV-2 variant. And Long Covid incidences for recent (Omicron) variants were higher than those for earlier ones.

Estimating the Long Covid incidence is challenging because symptoms of Long Covid often overlap with symptoms of other diseases. Indeed, estimates by earlier studies have varied from 6% to over 50%. Given this ambiguity, the research team also calculated a “minimum incidence” of Long Covid by measuring the “excess incidence” of Long Covid symptoms. To do this, the team first measured the incidence of symptoms among people who could not have had Long Covid. (In other words, some other diseases must have caused these symptoms in these people.) For example, in early 2019 some people’s symptoms resembled those of Long Covid, even though Long Covid could not have caused these symptoms (since the pandemic had just begun).
...

I'm a bit confused by line that talks about "early 2019" and then says "since the pandemic had just begun." Do they mean early 2020? Or did they mean 2019 and meant to say that the pandemic had not yet begun?

One more quote:
Solve ME said:
Overall, these results are important because they show that despite new treatments and vaccines and greater immunity among the population over these last few years, Long Covid incidence has not gone down. Thus, Long Covid is still an important public health matter needing serious attention and resources.
 
Be part of the solution – Join the Unified platform today.

www.unhidenow.org

Brain Inflammation Collaborative

There's more information here:
Solve M.E. and The Brain Inflammation Collaborative Launch the Unified Platform to Advance Research Across 30+ Chronic Conditions

They've also announced a webinar scheduled for October 14:
Solve ME said:
On October 14, 2025, Solve will host Brain Inflammation Collaborative (BIC) co-founder and CEO Christy Jagdfeld, Principal Investigator and lived experience expert Megan L. Fitzgerald, PhD, and platform architect and caregiver to a person with ME/CFS Chris Nowak (CareEvolution) for the webinar, “The Unified Platform: Advancing Research Across ME/CFS, Long Covid, and Other Chronic Conditions.”

Register for the webinar here:
https://us02web.zoom.us/webinar/register/WN_ATe5-nbxSsy89D8TcXIInw
 
Solve ME article on research led by Dr. Maureen Hansen:

Extracellular Vesicle Proteins in Men with ME/CFS: Changes Before and After Exercise Correlate with Key Symptoms
Solve ME said:
Dr. Maureen Hanson, a professor of molecular biology and genetics at Cornell University and member of Solve’s Research Advisory Council, specializes in understanding the molecular nature of ME/CFS. ME/CFS has affected Dr. Hanson’s own family, and she is an important ME/CFS researcher and strong patient advocate. Recently, Dr. Hanson’s team published a study in Clinical and Translational Medicine comparing how ME/CFS and exercise relate to extracellular vesicles in men.
...

The team found levels of many extracellular vesicle proteins from healthy men differed from those from men with ME/CFS. Even before exercise, some of these differences suggested that men with ME/CFS have problems with blood clotting; immune functions (especially with neutrophils, important for early immunological defenses, and with complement proteins, important for targeting infectious agents); making and breaking down proteins; metabolism; and oxidative stress. The differences in complement proteins got worse soon after exercise, possibly exacerbating post-exertional malaise. Other differences appearing soon after exercise suggested that the men with ME/CFS were improperly recovering from exercise regarding how their mitochondria processed energy and how they regulated coagulation (blood clotting).

Severity of post-exertional malaise (PEM) correlated with differences in extracellular vesicle proteins related to the endoplasmic reticulum stress response and to protein folding. In other words, the men in whom levels of these extracellular vesicle proteins changed the most also had the most severe post-exertional malaise. And severity of unrefreshing sleep correlated with differences in extracellular vesicle proteins related to cell signaling, metabolism, and protein folding. These results suggested that men with ME/CFS may experience symptoms of post-exertional malaise and unrefreshing sleep after exercise because of problems with endoplasmic reticulum stress response, with protein folding, and with using energy to recover from physical stress.

Solve ME said:
Why This Study Matters to the Patient Community:
  • Suggests processes whose dysregulation may contribute to ME/CFS symptoms after exercise: Finds changed levels of proteins involved in endoplasmic reticulum responses, metabolism, and protein folding to correlate with symptom severity.
  • Lays the Groundwork for Targeted Treatments: Suggests drugs targeting these processes and other processes (like complement) may reduce post-exertional malaise and unrefreshing sleep for some patients.
  • Advances Diagnostic Tools: Shows extracellular vesicle proteins are useful and convenient biomarkers for some exercise-related symptoms of ME/CFS.
  • Relevant for key symptoms of ME/CFS: Focuses on two hallmark symptoms of ME/CFS—post-exertional malaise and unrefreshing sleep.

Forum thread for this study is here:

https://www.s4me.info/threads/ev-pr...ercise-in-males-with-me-cfs-2025-glass.44472/
 
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