Announcing the MassME@40 Campaign

For forty years, beginning with the first support group meeting in Bonnie Gorman's living room in 1982, MassME has been a leading voice in advocating for knowledge, research, and clinical care for those with ME. We have sponsored support groups, organized public awareness events and healthcare practitioner education, contributed funding and expertise to research, and provided doctor referrals, disability counseling, and one-on-one patient support. We are the oldest state-level organization for this illness in the US, with a national stature and reputation, and an international following. 

 We are launching a two-year campaign – MassME@40.

This campaign will:

     ·   celebrate our history and our community

     ·   continue to raise awareness of ME/CFS and other infection-associated chronic illnesses at this crucial post-pandemic moment for healthcare provision

     ·   grow our membership and raise funds so we can move into our fifth decade stronger than ever

The MassME@40 campaign will celebrate and acknowledge the contributions of many volunteers over the decades, and provide renewed momentum for our trajectory into our fifth decade. We invite you all to participate in this campaign, and you’ll be hearing from us about opportunities to do so.

Together, we are MassME, and together we are stronger.

If you missed the June Sunday Conversation event, you can learn more about MassME's history by watching the recording.

In this edition of Sunday Conversations with MassME, members of the Association discussed how it has stayed strong and relevant throughout 40 years. An overview was given for each of the past four decades, each bringing important changes for this misunderstood and stigmatized disease. Learn about our unique patient-led organization that has influenced progress and now helps patients more than ever.

There is no Sunday Conversation in July. Please join us on Sunday, August 20. Stay tuned for details!

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 - Summer Session

NEW TIMES! Join us on Monday nights @ 7 pm and Wednesday afternoons @ 3:30 pm! 

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.

In an effort to streamline the registration process, we are offering one registration for the entire Summer Session.  Once registered, you are welcome to attend as many meetings as you like.

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.

Thank you to the Disability Law Center of Massachusetts, Rep. Denise Garlick (13th Norfolk), and Senator Jason Lewis (5th Middlesex) for filing H.3040 | S.2024, a bill that will make hybrid and remote access to public meetings mandatory in Massachusetts.  

Rick Glassman, a Disability Law Center attorney, is seeking one or more Massachusetts residents with ME/CFS to testify in support of the bill. If interested, please contact Bill at rglassman@dlc-ma.org.

Helpful Cookbook

Cooking and meal preparation — be it for one or for a family — is one of those activities rife with difficulties for those with ME. As one of our members remarked, "Any recipe that starts with "chop an onion" is already outside my daily energy envelope." And yet cooking can be a rewarding and agency-enhancing experience for those with complex chronic illnesses.

Enter a new cookbook, Crip Up the Kitchen: Tools, Tips, and Recipes for the Disabled Cook by disabled author Jules Sherred.

"The kitchen is the most ableist room in the house. With 50 recipes that make use of three key tools— the electric pressure cooker, air fryer, and bread machine — Jules has set out to make the kitchen accessible and enjoyable. The book includes pantry prep, meal planning, shopping guides, kitchen organization plans, and tips for cooking safely when disabled, all taking into account varying physical abilities and energy levels."

Read ME activist and author Jennie Spotila's review of Crip Up the Kitchen on her Occupy M.E. blog. 

Long COVID Alliance Announces New Initiative

The Long COVID Alliance, a multi-organization coalition founded by Solve ME and the COVID-19 Longhauler Advocacy Project, has announced a new program. The  Infection Associated Chronic Conditions Patient Advocacy Coalition (IACCPAC) received $77,000 in grant funding from  the CDC Foundation.

The project will bring together diverse disease groups and patient organizations to  address challenges faced by people living with Long COVID and associated conditions, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, mast-cell activation syndrome (MCAS), Ehlers-Danlos Syndrome (EDS), Lyme disease, and other post-viral or infection-associated conditions.

The project will be led by Solve ME, the COVID-19 Longhauler Advocacy Project, Dysautonomia International, and the Patient-Led Research Collaborative. The Long COVID Alliance has over 180 international IACC member organizations, including MassME.  

NASEM Workshop on Infection-Associated Chronic Illnesses

The National Academies of Sciences, Engineering, and Medicine held a two-day workshop in late June -- "Toward a Common Research Agenda in Infection-Associated Chronic Illnesses: A Workshop to Examine Common, Overlapping Clinical and Biological Factors".

Anthony Komaroff (Harvard) provided an introduction and historical overview, and other ME experts and researchers at the meeting included Peter Rowe (Johns Hopkins), Carmen Sheibenbogen (Charité), Julia Oh (Jackson Lab), Avindra Nath (NIH), Amy Proal (PolyBIO), and Oved Amitay (Solve ME).

Videos of the presentations have now been posted here and are well worth watching.

Links to Slides from the individual presentations, and a link to the Agenda are on this same page. The Agenda is useful as a guide to the presentations.

Education for Physicians

The CDCs Clinician Outreach and Communication Activity (COCA) held a webinar on "Evaluating and Supporting Patients with Long COVID in Returning to Work". You can watch the recoding here.

Dysautonomia International Conference and Advocacy Day

Dysautonomia International will hold their 2023 conference in Washington D.C. July 14 - 16. This will be followed by their Advocacy Day on Capitol Hill on July 17. Expert speakers will be presenting on topics of interest to the ME community: POTS, autoimmune autonomic ganglionopathy, gastroparesis, autonomic neuropathies, Ehlers-Danlos syndrome, mast cell activation syndrome, Sjogren's disease, Long COVID, chronic pain management, coping with chronic illness, and more. There will be a separate program for teens throughout the conference. The list of speakers can be found here. Learn more or register here.

Lives Interrupted Project Gets Underway

Lives Interrupted is a research project designed to quantify the economic burden that infection-associated chronic illnesses imposes on its victims and society at large.  The research vehicle is an on-line survey hosted by Health Rising.  You can learn more about the project and/or sign up to participate here.

Caregiver Survey

Are you a caregiver of a loved one with ME/CFS/Long COVID or related illnesses?  

MassME member Kim Moy is working to launch Caregiver Wisdom, an online community focusing on the needs of caregivers of loved ones with debilitating chronic illnesses.

It will offer expert advice, trustworthy resources, and community connection. If you are interested in helping Kim set an agenda and priorities for Caregiver Wisdom, she invites you to take this survey.

Summer can bring on extra challenges when you have ME/CFS and FM.

Here are some resources that might be helpful as the weather gets warmer:

MEAction: Facets of ME: Temperature Dysregulation

ME Association UK: How to cope with a heatwave if you have ME/CFS

MassME website article: Tips for Traveling if you are an ME/CFS or FM Patient

HealthRising: An ME/CFS Traveller on Tips for Travelling with ME/CFS and/or Fibromyalgia

Personal video from a patient: How do I travel with severe ME/CFS?

Invisible Illness

This month's spotlight is a video which was shared with us by a MassME member.

Verity of TruGrace Makeup Artistry uses her art form to expresses her chronic illness in a creative and powerful way.

Click to watch.

Would you like to be featured in a Spotlight?

We feature physicians, researchers, patients, caregivers, and those who help people who live with ME/CFS and FM.

If you would like to share your story, please contact us. We would love to hear from you!