Events

Hey Gen Z and Millennials, we got you!

You must live in MA to attend the Wellness Workshop and New England for the meetup.

Click here for Wellness Workshop details

Click here for New England Meetup details

There is no Sunday Conversations meeting this month. In the meantime, we invite you to consider this month’s question, "What are some ways you remain positive?"

We will post this question on our private members-only Facebook group for open discussion. Current members, click here for an invite to the group. Not a member? Please join us!

Previously recorded presentations, slides, and other resources from past events are available on the main Sunday Conversations Page.

New BlueSky Social Media

Follow us on BlueSky!

We are broadening our horizons and added BlueSky to our social media outreach.

Together we are stronger!

@massmecfs.bsky.social

Advocacy Corner

As a result of our meetings with the Massachusetts Department of Public Health (Mass DPH), we were invited to organize a webinar about ME/CFS and associated illnesses for their staff. Hayla Sluss, PhD, gave the main presentation, "The Evolution and Recognition of ME/CFS and its Link to COVID-19." Jae Guth, from our advocacy team, gave a brief talk on lived experience with ME/CFS.

Our other main focus this month has been reaching out to the Executive Branch -- Kate Walsh, Secretary of Health and Human Services; Robbie Goldstein, Commissioner of Mass DPH; and Governor Maura Healey. Our hope was that even a small amount of funding would be added to the DPH budget to fund data collection on people with IACCIs, and to update the DPH website. Though we were not successful with the line item request, the Governor and her staff received some excellent information, including a Primer on IACCIs developed by 20+ advocacy organizations, including MassME. We will be continuing outreach efforts in 2025.

Please email us at advocacy@massmecfs.org if you would like to get involved.

Newsworthy Events and Links

New Mestinon/LDN Study in Boston

Open Medicine Foundation is starting a new clinical trial at Brigham and Women's Hospital on the efficacy of pyridostigmine (Mestinon) and low dose naltrexone (LDN) in people with ME/CFS.

You may qualify if you are between 18 and 65 years of age (inclusive), meet National Academy of Medicine Criteria (NAM) or Canadian Consensus Criteria (CCC), and demonstrate orthostatic intolerance for diagnosis of ME/CFS, had an onset of symptoms before December 2019, have a functioning smart phone, and can adhere to the study requirements for the length of the study (3 months).

If you would like to be considered for participation in the trial, please sign up for Open Medicine Foundation’s StudyME registry. Participants who have not previously taken LDN or Mestinon will be prioritized for enrollment.

Support a Research Case Definition Consensus for ME/CFS

The U.K.-based ME Association is collecting signatures to support a Research Case Definition Consensus Statement. Research into ME has been complicated for decades by varying case definitions, leading to studies that include participants who may not actually have the illness. Having a consensus case definition that all researchers could adopt would clarify research results and allow better comparisons across illness phenotypes. MassME strongly supports this initiative, which was developed in part by ME researcher Lenny Jason of de Paul University.

You can read more about the initiative, and see a list of researchers, organizations, and advocates who have signed on. Sign the form to indicate your own support.

Upcoming Renegade Research Events

Renegade Research hosts a series of Research Roundtables and Clinician's Roundtables.

Upcoming events in February are:

Research Roundtable: Johns Hopkins ME/CFS Clinic Update Part 2
Peter Rowe, MD, & Alba Azola, MD will discuss the latest research on ME/CFS and Long COVID from their clinic.

Friday Feb 14, 2025 - 1:00 PM ET (10:00 AM PT). Register here.

Clinician’s Roundtable: John Haughton MD, MS - The Remission Biome Protocol. Clinicians and patients are invited to learn the protocol in detail.
Friday Feb 21, 2025 - 1:00 PM ET (10:00 AM PT). Register here.

Time Magazine Article on Long COVID

Time Magazine has published a timely article on Long COVID and the disbelief that patients face trying to get care. This article features the experience of long-time supporter of MassME, Elizabeth Knights. And thank you to our very own Rivka Solomon for pitching the article and helping the reporter write an accurate story.

Social Security Enshrines Remote Options for Disability Hearings

The SSA is making the pandemic workaround a permanent part of its procedures, establishing remote hearings as a standard option for disability claimants.

Click here for more information.

In Memoriam

We sadly mark the passing of Joan Stuart Livingston on January 18, 2025. Joan was a pillar of the MassME community for years, serving on the Board and making major contributions to our then-quarterly newsletter, The Update. A more substantial appreciation of Joan by Ken Casanova will appear in next month's newsletter.