March 2024

In this month's newsletter:

• Upcoming Events
  
  • Sunday Conversations
  • Young Adult Support Group - Winter
• Advocacy Week
• Newsworthy Events and Links

“Dysautonomias 101: More Than Just POTS”

Sunday, March 17, 2024, 4 p.m. Eastern Time

“Dysautonomias” refers to the generic term encompassing all disorders of the autonomic nervous system. In this edition of Sunday Conversations, Peter Cariani, Ph.D., will give a brief overview of the autonomic nervous system and what can go wrong. He will also describe the role of dysautonomias in ME/CFS, FM, and other chronic conditions, what causes these conditions to be self-sustaining, what medical specialties treat dysautonomias, and add his own thoughts about diagnosis and treatment.  Hayla Sluss, Ph.D., is Moderator and Discussant.

Learn more.

A recording will be available after the event.
Registration closes one hour before the program begins.

The videos, slides, and other resources from past events are available on the
Sunday Conversations Page.

Young Adult Support Group for those with ME/CFS, FM, Lyme, Long COVID, and Chronic Illness - Winter Session

This drop-in Virtual Support Group is interactive and provides a safe space for patients to share stories and experiences, ask questions, and offer one another support.

What age is considered Young Adult?
Anyone over the age of 18 who self-identifies as a young adult, either through age or via the life challenges typically experienced by this population. Relevant topics of this group are challenges with college/higher education, starting a career, housing challenges, dating and/or starting a family, and social challenges.

There is one registration for the entire session.  Once registered, you are welcome to attend as many meetings as you like.

Advocacy Week on Capitol Hill

Today is your last chance to register for SolveME's Advocacy Week. This is an easy way for you to make your voice heard on Capitol Hill, and to be in direct contact with the offices of your elected representatives.

SolveME offers training and guidance for participation at any energy level. All meetings are held virtually, so no travel is required. Meetings with Senate offices will take place on Tuesday, April 16, and meetings with House offices will take place on Thursday, April 18.

Massachusetts has a history of showing up in force for Advocacy Week — let's make sure we have constituents and meetings with all eleven offices of our congressional delegation. We particularly encourage constituents of the following districts to register: 1st (Richard Neal), 3rd (Lori Trahan), 6th (Seth Moulton), and 9th (Bill Keating).

IACCPAC Issues Report

The Infection-Associated Chronic Conditions Patient Advocacy Coalition (IACCPAC) has issued a report with summaries of the workshops held last year, sponsored by the CDC Foundation. The workshops brought together 60 representatives from 27 patient organizations, including MassME, to address shared challenges, build community, and identify priorities and opportunities to collaborate.

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NIH Seeking Feedback on ME/CFS Research Roadmap Priorities

You can submit public comments on the NIH ME/CFS Research Roadmap Priorities until March 8, 2024. Comments may include input on how the draft research priorities could be enhanced, new research questions that could be included, or challenges that the current research priorities may face.

NIH held a series of webinars on 8 different research topics and developed a set of research priorities based on the discussion. You can find the 8 research areas here and the videos of the webinars here. Our Board Member, Dr. Sluss, participated in the Genes and Genomics Webinar.

To submit comments, click on a research topic then click on Submit Your Idea at the top. You will need to create an account with NIH to submit comments. To see other submitted comments, click the Ideas tab right below the banner.

Need more help on how to submit feedback? In this YouTube video, Jarred Younger, a wonderful researcher in the ME, LC, and FM community, walks you through how to offer your input.

This roadmap is going to dictate ME research for years to come. 

Additional Funding for NIH RECOVER

The NIH announced $515 million in additional funding over four years to bolster the RECOVER (Researching COVID to Enhance Recovery) Initiative. With an initial $1.15 billion, the RECOVER program has primarily funded observational longitudinal studies of Long COVID. The new funding is expected to include more clinical trials for treatments.

NIH study offers new clues into the causes of post-infectious ME/CFS

In a detailed clinical study, researchers at the National Institutes of Health have found differences in the brains and immune systems of people with post-infectious ME/CFS (PI-ME/CFS). They also found distinct differences between men and women with the disease. The findings were published in Nature Communications.

Response from our community to some aspects of the study have been critical. Please see MassME's longer response statement here.

Clinician Roundtable

Renegade Research will be hosting a monthly clinician round table on ME/CFS, Long COVID, and post-infectious chronic illness. Expert ME/LC clinicians will discuss their approach to treating complex illnesses, with the intent of expanding the pool of informed providers.

Their first guests are Dr. David Kaufman and Dr. Ilene Ruhoy of the Unraveled podcast, on Monday, March 15 at 1:00 EST. These events are open to the public. Register here.

OMF's Research Registry Seeking More Participants

The Open Medicine Foundation (OMF) has had more than 7,700 people sign up for their StudyME Registry and would like even more participants. The registry provides access to a pool of potential study participants for research projects. Researchers often say that the hardest part of a research project is finding participants.

You can help by signing up today! You will fill out a brief form with your contact information and your areas of interest. No medical information is required. You will receive notifications if any research studies match your interests. Healthy controls are also welcome to register.

Millions Missing 2024

#MEAction is focusing on medical education for this year's Millions Missing events. Events can be any size (see examples here) and the goal is to have them between May 3rd and May 12th (International ME/CFS Awareness Day).

If you would like to participate, use this form to sign up. The kickoff meeting was held on January 20th; if you missed it you can watch the video here.

PolyBio Announces New Round of Research Funding

The PolyBio Research Foundation, based in Massachusetts, has announced new grant funding in the second phase of its Long COVID Research Consortium. The $15 million in research funds will extend research into viral persistence in Long COVID patients, and begin clinical trials for potentially promising therapies.