May 2024

In this month's newsletter:

• Membership Fee Increase
• May Events
  
  • Sunday Conversations
  • Young Adult Support Group - Spring Session
• Special Event - Boston Waterfront 5K
• Advocacy Updates
• ME/CFS Awareness Day
• Well Deserved Congratulations!
• ABLE Account
• Newsworthy Events and Links

MassME has been an almost entirely volunteer-run organization for forty years, and we have been able to keep our membership fees accordingly low. But now, increasing demand for patient services, support groups, and informational events means that we need to raise our membership fees for the first time since the year 2000. This increase will go into effect on July 1:

$40 individual membership

$55 family membership

Sign up or renew now! If you become a member or renew your membership before July 1st, you will receive all our membership benefits for the next twelve months at the current fee level ($25 individual, $40 family).

All of our income is used to support our community and essential services. If our membership fee is a hardship, we offer Courtesy and Reduced Fee memberships. Please contact us.

“Are you M.A.D.?

An axis awry of
Mast cell activation disease,
Autonomic neuropathy and
Disorders of connective tissue”

Sunday, May 19, 2024, 4 p.m. Eastern Time

A growing body of evidence is linking heritable disorders of connective tissue, such as Ehlers Danlos Variants, with dysautonomia and mast cell dysfunction, which lead to chronic fatigue, brain fog, irritable bowel symptoms and pain syndromes.  A brief review of the diagnosis and relationships of this clinical triad, MCAD, Autonomic dysfunction, and  Disorders of connective tissue or hEDS. This, in turn, should lead to multi-disciplinary clinical therapies to help right this trio of modern day epidemics. Learn more. 

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

The recording from April's “Got Mold? How Our Homes Impact Our Health” with Michael Rubino can be found here.

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

Young Adult Support Group  - Spring 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.

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

Join Team MassME at the McCourt Foundation's 2024 Boston Waterfront 5K on June 9

Run/Walk/Roll for ME and the Long Haul! Help us to raise awareness of ME/CFS and Long COVID, and to fund MassME's ongoing information and support programs. 

Register as a participant

We know that 5K is a marathon — or beyond — for many with ME or LC. Ask healthy friends or family members to run on your behalf with Team MassME using this link. The 5K course will be accessible to wheelchairs, including motorized devices, and anyone needing assistance to participate can be accompanied by up to two support members who do not need to register. 

The registration process is simple. The fee to register is $40 (plus a $4 processing fee).*  Each participant will have their own fundraising page associated with Team MassME.

Support our team

You can donate at our main team page, or choose one of our team members to support their efforts! All donations will help us continue to bring you information and support programs. Together, we are stronger!

If you have any questions, please contact Susan Buckley at susanb@massmcfs.org.

*If the fee is a financial hardship, please let us know..

Please share this event with your network!

You can support Team MassME by clicking here. No amount is too small!

Massachusetts Legislative Advocacy

"…Long COVID and other Infection-Associated Chronic Conditions and Illnesses (IACCI’s) including but not limited to: ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome); POTS (Postural Orthostatic Tachycardia Syndrome); Dysautonomia, Fibromyalgia.”

This is the language (in italics) we hope to see added to legislation pertaining to Long COVID. 

H.2147 was a Resolve filed by state Representative Mindy Domb this legislative term to identify people in the government and community to serve on a commission to study the needs of people with Long COVID.  The Resolve was limited to Long COVID, but we at MassME feel it was important to include other IACCI’s as well. 

In the fall of 2023, Phil Chernin, then MassME Co-President, provided testimony in support of H.2147, and also provided essential information about ME/CFS.  H2147 was referred to the Joint Committee on Public Health, which after some time referred it without any changes to the Joint Committee on Public Health Financing. Ultimately the Resolve was reported out for study.  This means that’s it for this year, but the Resolve may be taken up and re-filed again next year. 

Throughout the process we were in touch with a number of legislators and aides who indicated their support for adding the language above. While we didn’t get the language change we hoped for, we believe we have made some connections and built some valuable bridges for future advocacy efforts.

Many thanks to all the people who helped by writing emails and making phone calls.
You are making a difference!

Congressional Advocacy

During SolveME's Advocacy Week (April 15-19) 330 advocates from 44 states attended 250 meetings with their congressional representatives. Massachusetts and MassME members were well-represented, with 24 advocates who met with eight out of nine Massachusetts congressional delegation offices. Thank you to all who gave their time and energy to this effort.

The 'ask' this year was for our elected representatives to support a coordinating mechanism or office for infection-associated chronic conditions and illnesses at the NIH. You can find a recent white paper by SolveME supporting this idea here.

If you would like to join MassME's advocacy efforts at state or federal levels, please fill out this form, or contact MassME's Advocacy Coordinator, Cheryl Breslin, at advocacy@massmecfs.org.

Observe ME/CFS Awareness Day with the Bateman Horne Center

Join the Bateman Horne Center to observe ME/CFS Awareness Day at 3:00 PM ET on Tuesday, May 14th.

Researchers and clinicians will share recent advances and acknowledge the stories of people with ME/CFS. Register here.

Millions Missing 2024

#MEAction is organizing medical education events for #MillionsMissing 2024 as part of their TeachME/TreatME campaign.

You can sign up here if you want to help with an event  or you can participate from home during #MillionsMissing week (May 3rd to May 12th) using their handy toolkit.

Solve M.E. Announces Emily Taylor as
New President and CEO

Emily Taylor, who many of you have known as SolveME's Vice President of Advocacy and Engagement, has been named President and CEO. Emily has been a tireless voice for people with ME/CFS for two decades, and played a key role in establishing the $1.15 billion RECOVER funding at the NIH. In her new role, Emily will continue to bring her expertise in health policy and patient advocacy to her work with members of Congress and federal agencies, and to SolveME's commitment to improve the lives of those with ME/CFS, Long COVID, and other infection-associated chronic illnesses and conditions.  

All of us here at MassME send Emily our congratulations.

We are delighted to see Jaime Seltzer, Scientific Director at #MEAction, included in the TIME 100 Health. "In the wake of the pandemic, a new era emerges—marked by fresh discoveries, novel treatments, and global victories over disease. These are the most influential people in health in 2024." Well-deserved congratulations, Jaime!

Also included on this list are: Dr. Ziyad Al-Ali of the VA, Long COVID clinician and advocate; Dr. Akiko Iwasaki of Yale, a researcher on infection-related chronic illnesses; and Dr. Avindra Nath, who headed the recent NIH intramural ME/CFS study.

Little-Known Program Offers Tax-Free Savings and Investment Accounts For People On Disability 

Are you on Disability? If so, here's a resource that might benefit you.

For the past ten years, the Achieving a Better Life Experience (ABLE) Act has allowed eligible people with disabilities to create special tax-free savings/Investment accounts. These accounts let people save for qualified expenses like transportation, healthcare, food, housing, education,  retirement and more without putting their disability benefits at risk.

In fact, you can save up to $100,000 in an ABLE account without jeopardizing your SSI Disability, Medicaid, and SNAP benefits among others. 

ABLE accounts are available to people in all 50 states and you aren't limited to your own state's ABLE program. You can open an account with any state's ABLE program that allows out-of-state residents, as many do.

At this writing, if you want to open an ABLE account, the symptoms of your disability must have begun before your 26th birthday.  You also must either have (a) SSI or SSDI or (b) a doctor who is willing to document that you have "marked and severe" functional limitations. Improvements are coming, however. Starting in January 2026, ABLE accounts will be available to people whose disability began before age 46. This will nearly double the number of people who are eligible to open these accounts.

If you'd like to learn more, the ABLE National Resource Center has many webinar videos about the benefits these accounts provide. You can find them on their YouTube Channel. You can also email the ABLE NRC directly with any questions at info@ablenrc.org.

Webinar on Immunological Signatures, May 8th at 3:30 PM ET

Join researchers David Putrino and Jamie Wood for a webinar on immunological signatures in Long COVID and ME/CFS on Wednesday, May 8th at 3:30 PM (ET). They have conducted several studies on how the immune response differs in people who develop Long COVID from the immune response in other people. They would now like to extend their studies to include other infection associated chronic conditions such as ME/CFS. Learn more and register with SolveME for the webinar here.

NIH Updates on ME/CFS Research

Wednesday, May 15, 2024—Meeting of the National Advisory Neurological Disorders and Stroke Council: The Advisory Council provides advice to the National Institute of Neurological Diseases and Stroke on extramural funding. The ME/CFS Research Roadmap will be discussed at their next meeting on May 15 and 16. The first part of the meeting is open to the public and will begin at 10:00AM ET and will be livestreamed on NIH Videocast. Meeting agenda will be available soon.

Tuesday, May 28, 2024—NIH ME/CFS Telebriefing/Webinar: The webinar will include updates from NIH on ME/CFS-related research activities and a scientific presentation by Dr. Avindra Nath, M.D., NINDS Clinical Director. Registration and Zoom details will be available soon here.

Creative Writing Workshop for People with ME/CFS and/or Long COVID

#MEAction is partnering with the Writers Guild Initiative to offer a creative writing workshop to people with ME/CFS or Long COVID. The workshop consists of three virtual sessions on Saturdays in June. If you are a writer, poet, memoirist, or keep a journal and want coaching on telling your story, this workshop is for you. Apply here.

The application deadline is Friday, May 17th, 2024 and space is limited to 30 spots. 

Long Covid Studies

A new long COVID project makes information about clinical trials more accessible to people who may want to participate in research while showing gaps in the current search for meaningful treatments. Patient-researcher Ezra Spier developed the new project, called Long COVID Studies. As of its launch on March 26, the site includes details of about 550 trials in the U.S. and 54 other countries.

Demystifying Long COVID North American Conference, June 6-7, Boston, MA

Do you know a health care provider who wants to learn more about Long COVID? They might want to attend the Demystifying Long COVID North American Conference 2024 which will be held on 6 - 7 June 2024 in Boston, MA  (in person or online).

This conference aims to raise awareness, clarify misconceptions, promote understanding, and stimulate discussion amongst healthcare professionals, investigators, policymakers, and community representatives on the clinical manifestations, management, plausible preventive and therapeutic options, and public health challenges related to long COVID (or post-acute sequelae of COVID-19). More information is available here.

Dysautonomia International's 12th Annual Conference, June 28-30, Chicago, IL

Dysautonomia International is planning their annual conference on autonomic disorders, including POTS, a common comorbidity with ME/CFS. The conference will bring together patients, researchers, clinicians and government policy makers to discuss diagnosis and treatment of autonomic disorders.

There are three ways to participate -- attend in person in Chicago ($350), watch the livestream of the lectures in the main ballroom ($100), or access the recordings a month after the conference ($25). Learn more here and register here.