USA: News from Solve ME

Tonight 11pm UK from what the translation tells me, it's 3pm PT/6pm ET

Happening today!
https://ow.ly/1Tih50VumPR

There's still time to sign up for our webinar today @ 3 pm PT / 6 pm ET:
"Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID."
Join us for a webinar on exciting new research on the immune system in ME/CFS and Long COVID. Two research labs are working together to study how immune cells behave differently in people with these illnesses.
Their goals include:
� Learning more about how the immune system is affected
� Identifying different patient subgroups
� Finding new ways to diagnose and treat these conditions
 
bobbler said:
Tonight 11pm UK from what the translation tells me, it's 3pm PT/6pm ET

Happening today!
https://ow.ly/1Tih50VumPR

There's still time to sign up for our webinar today @ 3 pm PT / 6 pm ET:
"Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID."
Join us for a webinar on exciting new research on the immune system in ME/CFS and Long COVID. Two research labs are working together to study how immune cells behave differently in people with these illnesses.
Their goals include:
� Learning more about how the immune system is affected
� Identifying different patient subgroups
� Finding new ways to diagnose and treat these conditions
Click to expand...
Station: SolveME / YouTube
Date: May 1, 2025
URL:

Item: Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID

https://twitter.com/user/status/1917705729143706033
Click to expand...
 
News for Solve M.E. Advocacy Week 2025

A reminder that Advocacy Week 2025 is is scheduled for June 23 - 27. This year all activites are 100% virtual. You can participate from home which makes it easier to engage with your representatives and advocate for change.

If you're not able to particpate in Advocacy Week you can ask friends, family members, or anyone else who might be interested to sign up (see registration link at the end of post). No experience is necessary.

A short summary of Advocacy Week:
Solve ME said:
Advocacy Week is a nationwide advocacy effort to connect people with ME/CFS and associated conditions; scientists; clinicians, and caregivers to share their unique stories with Congress. Our ultimate goal is to make these conditions widely understood, diagnosable, and treatable.

There will be actions for every energy level and ability to join, from social media posts to virtual meetings with congressional leaders. We will have levels of messaging tailored to beginning, intermediate, and experienced advocates.
Click to expand...

Solve ME has just announced the dates and times for three online training sessions. Choose the session that suits your level of experience.
Solve ME said:
There will be three 1-hour training sessions. This year we will have three different levels of messaging.
  • 9 am PT / 12 pm ET on May 28, 2025: Training for beginners and first-time advocates.
  • 9 am PT / 12 pm ET on June 4, 2025: Training for intermediate-level advocates (e.g. who have participated in a previous Advocacy Week or have done some other advocacy before but do not wish to lead a team).
  • 9 am PT / 12 pm ET on June 11, 2025: Training for team leads and advanced advocates.
Training sessions will include information on:
  • How to tell your story
  • What to expect in your meetings
  • What we are advocating for
  • How to use the Advocacy Associates App
Click to expand...

General registration for Advocacy Week (deadline May 12)

Registration for training sessions (you can select the session you want at this link)
 
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ahimsa said:
News for Solve M.E. Advocacy Week 2025

A reminder that Advocacy Week 2025 is is scheduled for June 23 - 27. This year all activites are 100% virtual. You can participate from home which makes it easier to engage with your representatives and advocate for change.

If you're not able to particpate in Advocacy Week you can ask friends, family members, or anyone else who might be interested to sign up (see registration link at the end of post). No experience is necessary.

...

General registration for Advocacy Week (deadline May 12)

Registration for training sessions (you can select the session you want at this link)
Click to expand...

The deadline for signing up for Advocacy Week has been extended to May 27. Anyone in the USA is encouraged to volunteer.

I signed up myself - I'm a first timer!

I've also signed up for the June 4th training session. I wanted to go to the May 28th training session (for new folks) but I had a conflict.
 
Solve ME Webinar:

Probing Functional Autoantibodies in Patients with ME/CFS

Thursday, July 31
12 pm Pacific / 3 pm Eastern

Dr. Akiko Iwasaki (Sterling Professor of Immunobiology and Molecular, Cellular and Developmental Biology at Yale University) is the first recipient of Solve’s ME/CFS Catalyst Award in support of her study, “Probing Functional Autoantibodies in Patients with ME/CFS.”

In this webinar, Dr. Iwasaki will talk to Solve CEO Emily Taylor about the study, which focuses on a crucial and emerging area of investigation: the role of autoantibodies—antibodies that mistakenly target a person’s own tissues—in the long-term neurological symptoms seen in patients with ME/CFS.

Dr. Iwasaki’s lab will investigate whether these autoantibodies can actually cause symptoms such as fatigue, pain, cognitive issues, and motor dysfunction by introducing patient-derived antibodies into mice and analyzing their effects. The team will also use an advanced technology (called HuProt) to scan all human proteins to find which ones are targeted by specific autoantibodies. Autoantibodies against specific human proteins may be effective biomarkers—measurable features that help us diagnose patients quicker or customize how we treat each patient.
Click to expand...

After her presentation and as time allows, Dr. Iwasaki will take questions from the audience.

Webinar registration
 
Three training videos for Advocacy Week 2025 (beginner, intermediate and advanced) have been posted on YouTube.

These videos are meant for people who have registered with Solve ME for this year's advocacy week, but I thought the videos might be useful for others who are planning to call (or write to) their government representatives about various ME/CFS issues.

For example, some of the storytelling tips could be helpful for anyone even if the policy examples in the videos are all specific to the USA.

Solve M.E. Advocacy Week 2025: Beginner Training

Solve M.E. Advocacy Week 2025: Intermediate Training

Solve M.E. Advocacy Week 2025: Advanced Training

There's also a document with this year's talking points:

Advocacy Week 2025 Talking Points
 
Register now for Solve ME's EmPOWER M.E. roundtable, scheduled for Friday, June 27.

From a recent email (Read full email here)
Solve ME said:
One of the cornerstones of our annual Advocacy Week program is the EmPOWER M.E. roundtable. Panels of patient advocates, professionals, and scientists share their expertise on topics relevant to the quality of life for people with ME/CFS and Long Covid and their caregivers.

EmPOWER M.E. is dedicated to empowering patients and caregivers in medical and advocacy environments, giving our community tools to share our stories with impact.

Driven by patient input, EmPOWER M.E. projects strive to ensure that no family ever has to learn “the hard way” on their journey with ME/CFS, Long Covid, or other post-infection diseases.

This year the EmPOWER M.E. topic is “Pacing: Power In Slowing Down.”

The program will include a main information session, followed by two community forums with experts and patient leaders.

Panelists include:
  • Todd E. Davenport, PT, DPT, PhD, MPH
  • Dr. Lisa Hamilton, OTD, OTR/L
  • Hollis Mickey, MA, MFA
  • Clayton Powers, DPT
Click to expand...

Registration link
 
�Big news! Simmaron Research is the winner of our latest Solve #MECFS Catalyst Award! We’re proud to provide funding for their clinical trial “Low Dose Rapamycin in ME/CFS, Long-COVID, and Other Infection Associated Chronic Conditions (NCT06257420).” Congratulations to Dr. C. Gunnar Gottschalk, Dr. Avik Roy, and the whole Simmaron team!

The study hypothesizes that mTOR inhibition through rapamycin may address observed findings of autophagy impairment and symptoms in a subset of patients with ME/CFS and other infection-associated chronic conditions and illnesses (IACCIs).
The Solve ME/CFS Catalyst Awards accelerate critical research into ME/CFS, Long Covid, and related conditions—helping breakthrough projects reach the finish line faster.
Solve CEO Emily Taylor noted, “We’re excited to fund this innovative study exploring rapamycin as a potential treatment for ME/CFS and related conditions. By focusing on autophagy and using real-world biomarkers, this research brings science closer to solutions—at no cost to patients and with powerful collaborations behind it. It’s a meaningful step toward care people urgently need.”

� Learn more: https://ow.ly/HaCV50WavR9

#MECFS #BiomedicalResearch
 
Solve Announces Funding for Ramsay Grant Awardees Dr. Jo Cambridge and Dr. Dana Yelin

Solve has awarded research funds to Dr. Jo Cambridge and Dr. Dana Yelin, both previous Ramsay Research Grant winners who are finding new ways to treat people with Long Covid and ME/CFS.

Dr. Cambridge is studying how ME/CFS affects metabolism in B cells as they progress from immature cells into mature ones, while Dr. Yelin is studying how much enhanced external counterpulsation reduces fatigue and improves the quality of life for people with Long Covid.

solvecfs.org

Solve Announces More Funding for Ramsay Awardees Dr. Geraldine Cambridge and Dr. Dana Yelin - Solve ME/CFS Initiative

The Solve ME/CFS Initiative (Solve M.E.) is proud to award research funds to Dr. Geraldine Cambridge and Dr. Dana Yelin, two world-class scientists who are finding new ways to treat people with Long Covid and ME/CFS.
solvecfs.org solvecfs.org
 
Two upcoming webinars by Solve ME:

1) The ADDRESS-LC Trial: Studying the Impact of Bezisterim on Brain fog and Fatigue in People with Long Covid

Tuesday, July 22
3 PM Pacific / 6 PM Eastern

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

Description:
In this webinar, we’ll be joined by panelists Michael Peluso, MD (Assistant Professor of Medicine, University of California, San Francisco) Ezra Spier (Creator, Long Covid Studies), Penelope Markham, PhD (Senior Vice President, BioVie) who will discuss the latest updates on Long COVID research and the ADDRESS-LC trial. The ADDRESS-LC trial was designed to assess the potential impact of bezisterim on cognitive impairment/brain fog and fatigue in individuals with Long COVID and is currently recruiting people 18-64 diagnosed with Long Covid. Attendees will learn more about the requirements for participation and how to join the trial.

In this discussion led by Solve M.E. President and CEO Emily Taylor, the panelists will also share how the lived experience of patients has informed the development and conduct of the trial and the importance of patient-researcher collaboration.
Click to expand...

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:
Dr. Akiko Iwasaki (Sterling Professor of Immunobiology and Molecular, Cellular and Developmental Biology at Yale University) is the first recipient of Solve’s ME/CFS Catalyst Award in support of her study, “Probing Functional Autoantibodies in Patients with ME/CFS.”

In this webinar, Dr. Iwasaki will talk to Solve CEO Emily Taylor about the study, which focuses on a crucial and emerging area of investigation: the role of autoantibodies—antibodies that mistakenly target a person’s own tissues—in the long-term neurological symptoms seen in patients with ME/CFS.

Dr. Iwasaki’s lab will investigate whether these autoantibodies can actually cause symptoms such as fatigue, pain, cognitive issues, and motor dysfunction by introducing patient-derived antibodies into mice and analyzing their effects. The team will also use an advanced technology (called HuProt) to scan all human proteins to find which ones are targeted by specific autoantibodies. Autoantibodies against specific human proteins may be effective biomarkers—measurable features that help us diagnose patients quicker or customize how we treat each patient.
Click to expand...
 
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