Events

Groups for Gen Z and Millennials

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

Sunday Conversations will return on April 27 as we welcome Sallie Rediske, MPT, who will discuss hypermobile EDS, ME/CFS, and CCI, and how they interface with physical therapy.

Stay tuned for details!

In the meantime, we invite you to consider this month’s question, "What are some positive things you have discovered about yourself?"

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.

Advocacy Corner

A mighty round of thanks to Cheryl Breslin for her leadership of our state advocacy efforts over the last year. Cheryl is stepping back, but we will continue to build on her efforts to bring the needs of our community to the attention of elected representatives and public health officials in Massachusetts. Would you like to join us, or just let us know about any initiatives that we should support? Please contact us at advocacy@massmecfs.org.

Rep. Mindy Domb and Sen. Liz Miranda have filed two bills in the Massachusetts Legislature addressing Long COVID care in Massachusetts. HD.3840 / SD.2322 calls for the Department of Public Health to conduct surveillance on Long COVID in order to determine its prevalence and impact. HD.3839 / SD.1431 proposes a patient navigation pilot program that would assist those living with Long COVID to access information, resources, and integrated clinical care. Please keep your eyes open for further emails from MassME regarding these two bills.

Another recent bill would support resident's rights to wear masks and other personal protective equipment in public: HD.2968 / SD.245, filed by Rep. Sabadosa and Sen. Brownsberger. MassME supports this effort, particularly in light of recent efforts to restrict this right elsewhere in the US. If you would like to contact your own representative to encourage them to support the PPE bills or sign on as a cosponsor, the Massachusetts Coalition for Health Equity has put together a useful tool kit with sample call-in scripts.

As always, we encourage you to reach out to your elected representatives to bring information about ME/CFS and other complex chronic illnesses to their attention. Tell your own story, and inform them of any hurdles you have encountered in finding informed clinical care or accessing services. The more our state representatives hear from us, the easier it will be for them to see the larger picture when we bring requests about specific bills. You can find your legislator here, and then click through to find their contact information.

March is Long COVID Awareness Month

Long COVID Awareness Day/Week/Month Events

International Long COVID Day (Saturday, March 15th), Week (March 10-16) and Month (March) are here. Several Long COVID groups are coordinating actions and events. Visit the International Long COVID Awareness website for more information.

Some of the Long COVID events this month include:

Webinar on Long COVID and the Future of Public Health

The COVID-19 Longhauler Advocacy Project (C19LAP) is holding a webinar on March 12th with Michael Osterholm, director of the Center for Infectious Disease Research and Policy, and C19LAP Founder Karyn Bishof called "Five Years Later: The ongoing COVID and Long COVID Crisis and the Future of Public Health".

This conversation will review the state of COVID five years after the pandemic, reflect on what has been learned, where public health went wrong, and how we can prevent further harm. Register here.

Commemorating Long COVID Awareness Day

Join The Sick Times on March 18 for a 2-hour presentation which will include a panel discussion and essay readings. Click here for more information.

Newsworthy Events and Links

MA Residents: Ask your Representative to Require Hybrid Access to Town/City Meetings

Massachusetts municipalities are currently allowed, but not required, to make their meetings hybrid with online access. A proposed bill (HD.368) filed by Rep. Tony Cabral would require public meetings to be hybrid.

During the pandemic, hybrid meetings greatly increase the ability of many people to participate in local government. But now, many communities are returning to in person only meetings. Please send an email to your representative if you support this.

Telehealth Update

There has been some confusing media reporting of Medicare coverage for telehealth in the last few weeks. Here's a quick explainer.

During the pandemic, Congress expanded telehealth services covered by Medicare. This benefit has been important for those with ME/CFS and other debilitating illnesses, allowing them to see their physicians without expending valuable energy or risking infection. This expanded coverage was a temporary measure, set to expire at the end of 2024. There was significant bipartisan support to extend this coverage for another two years in the next budget, but because that budget bill failed, and the country is operating under a short-term stop-gap funding bill, Medicare coverage for telehealth is set to expire on March 31st.

With current bipartisan support, another temporary extension is likely under whatever budget measures lawmakers agree to this month. The hope is that Medicare coverage of telehealth will be made permanent. If this coverage is important to you, tell your elected representatives. See the links in the Advocacy section to find how to contact your Congressional representative.

ME/CFS Cases are Higher Since COVID-19

Researchers find that new cases of ME/CFS are 15 times higher than before the COVID-19 pandemic.

A RECOVER study recently published in Journal of General Internal Medicine sheds new light on the relationship between COVID-19 and ME/CFS. RECOVER research previously found 85% of patients with Long COVID reported symptoms that are present in ME/CFS,

Upcoming Renegade Research Events

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

Upcoming events in March are:

Clinician’s Roundtable: John Haughton MD, MS - The Remission Biome Protocol. Clinicians and patients are invited to learn the protocol in detail.
March 7, 2025 - 1:00 PM ET (10:00 AM PT). Register here.

Clinician’s Roundtable: Tania Dempsey, MD - Vector-borne illnesses. Co-infections in ME/CFS and Long COVID.
March 14, 2025 - 1:00 PM ET (10:00 AM PT). Register here.

Research Roundtable: The Acid Test: a Patient-led Study of Lactate in ME/CFS and Long COVID
Todd Davenport, PhD, and Ciara Wright, PhD. will discuss the latest research on this patient-led study.

March 28, 2025 - 1:00 PM ET (10:00 AM PT). Register here.

Video Series: Severe ME/CFS: Care, Rights, and Research

This four-part webinar series presented by Solve M.E. and the Bateman Horne Center featured medical professionals, legal experts, scientists and care partners, discussing tips for caregiving, legal perspectives on individual rights, strategies for addressing treatment challenges for medical providers, and the latest research breakthroughs impacting people with Severe ME. Watch here.

Advocacy Week to be Held in June

Advocacy Week, run by SolveME/CFS, is an excellent way to make your voice heard on Capitol Hill. This year, the meetings with Congressional offices will be held June 23 - 27. Registration will open soon. All meetings this year will be held virtually, so no travel is required, and there are ways to engage at all energy levels.

We have had excellent representation from Massachusetts in past years, and we would like to continue to show up in force. Let's see if we can meet with every Massachusetts Congressional office this year. We would particularly welcome constituents of the 6th district (Seth Moulton).

Mark Your Calendars: IACFS/ME Conference October 22-25 in Fort Lauderdale, FL

The International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME) is hosting their scientific research conference in Fort Lauderdale, FL from October 22-25.

The conference is aimed at clinicians, researchers and educators, although anyone affected by or interested in ME/CFS, Long COVID, or other infection associated chronic conditions is welcome to attend. Research abstracts and workshop proposals are due May 5th. Learn more here.

Spotlight: Joan Livingston

A Living Memorial to Joan Livingston – 1954 - 2025

This Memorial is not only a remembrance of Joan, but an inspiration for those of us who knew her well and for those who felt her spark in passing contact.

A major part of Joan’s adult life was spent helping and advocating for ME/CFS patients, through the Massachusetts ME/CFS & FM Association. For those who are more recently part of the Association and the patient community and did not know her, it would be true to say that her spirit and past work still lives in the life and work of MassME. Without the incredible work of Joan and many other volunteers who built and nurtured the Association in its earlier years, the Association might not have been able to continue or to make a difference in people's lives as it does today.

Click here to read Joan's memorial.