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“When we started the first support group in 1983, I had no idea what this organization would grow into. These illnesses did not even have names, let alone any treatment options then."

— Bonnie Gorman, Founder

Advocacy - Call to Action!

Details: Last Updated: 11 March 2024 11 March 2024

SPECIAL REQUEST FOR MA RESIDENTS

Join us in making our voices heard!

With the appearance of Long COVID, other illnesses like ME/CFS, POTS, Dysautonomia, and Fibromyalgia are finally getting more attention and understanding. Medical professionals and people in government are recognizing the links between Long COVID and other infection-associated chronic conditions.

Now is the time for us to start approaching our legislators who decide what issues will be a focus and what causes will receive funding. There are MassME members who have already written to their state legislators and met with them, or spoken to legislative aides.

You can make a difference!

Invisible Disabilities Art Exhibit featuring MassME member Linda M. Morgenstern

Details: Last Updated: 06 July 2022 06 July 2022

MassME member Linda M. Morgenstern is a featured artist of this Invisable Disablilites art exhibit. She has graciously aggreed to donate the proceeds of her artwork to MassME. Read her moving story below.

I have lived with ME/CFS for 37 years. For much of that time, I maintained a public face very different from the private one. I worked in documentary film, telling stories was my craft. But my attempts to tell my own story, had been frustrating and even humiliating.

Following treatment for cancer in 2008, my illness became Severe. Amidst the rigors of treatment, I was struck by the radical difference in how I was treated as a cancer patient, medically, in the community, and by my own family. I was provided free acupuncture and massage! Neighbors left food deliveries. An entire hospital devoted to patient dignity and the very best care!

The suffering of ME/CFS goes unseen, untreated, and disbelieved.

It was pure serendipity that I saw a call for artwork on the theme of Invisible Illness, and was honored they accepted four small paintings. The paintings are loosely rendered landscapes with simple house forms. They are painted from memory, as I have been almost entirely housebound for a decade.

At the start of the Pandemic, with everyone sheltering in place, I began a series of House Paintings which speak to the isolation of our illness. They suggest a life lived within the confines of home, both Sanctuary and Prison. For the exhibition, I requested a chair beside the paintings. I would surely need, and if I could not attend this opening, as I have missed so much of my life —the chair would be vacant. It became part of the exhibit, a sign was printed, For the Millions Missing.

That night, I found myself explaining to State Senator Will Brownsberger what that meant and who we are.

These paintings have become my resistance to the hopelessness that can arise. The line between acceptance and defeat is a narrow one, indeed.

I make modest works, but they are a foundation on which I can stand, even if, just for a short period of time.

The cost of our invisibility is our very lives.

I was grateful to have this exhibition solidify my larger purpose. To join those who have been at work, tireless volunteers, small under resourced organizations —to raise awareness, and in time, as we all hope, to reclaim lives.

Respectfully yours,

Linda M. Morgenstern, ME/CFS, 37+

MassME thanks Bob Robitaille, volunteer Advocacy Coordinator

Details: Last Updated: 08 June 2022 08 June 2022

A Big THANK YOU to Bob Robitaille who is ending his tenure as volunteer Advocacy Coordinator for MassME/CFS.

Since 2018, Bob has coordinated our efforts with SolveME/CFS to ensure all Massachusetts legislators are visited during National ME/CFS Advocacy Day. Bob’s work included recruiting constituents from every Massachusetts congressional district as well as identifying meeting facilitators and acting as facilitator himself for several meetings. Thanks to Bob’s efforts, Massachusetts is one of the most active and reliable states that participate in Advocacy Day. What began in 2017 as two MassME members walking the halls of congress has grown to nearly 100 members and friends attending video meetings with congressional and senate leaders each year. During Bob’s breakout 2018 season, he personally organized in-person appointments at every Massachusets congressional office in D.C. -- nine offices in two days -- frequently bringing in a constituent via video feed on his tablet computer.

Bob was also one of the organizers of the Unrest event at the Massachusetts State House in April 2018, which was attended by principals or staff from 40 of the state legislative offices and which had two state senators as hosts. The event was held in support of access to Telemedicine, which would allow homebound patients to see doctors using videoconferencing (Hmm.. a little before its time). Bob also has helped to coordinate other state house actions in support of the MEAction Millions Missing campaign.

Although “retiring” as our volunteer coordinator, Bob will continue patient services work, offering his hard-earned expertise on disability counseling, which he discusses in this Interview with Llewelyn King. The Massachusetts ME/CFS and FM Association, our friends and partners are all indebted to Bob Robitaille and the entire Robitaille family for sharing their time, talents, struggles and friendship.