August 2024

In this month's newsletter:

• New Look Coming Soon
• August Events
• The Latest in Massachusetts
• Newsworthy Events and Links

We have exciting changes coming up!

MassME is working hard behind the scenes to provide you with the best online experience possible.

Some of the changes you will see in the next few months:

• An updated look for our newsletter and email communications
• Improvements in the interactive forms we use to gather information
• A more streamlined process to register for our events and support groups

And we have even more in store, so stay tuned!

Body of Water is a chronology of love, loss, and reconciliation that follows Sara’s journey as a landlocked distance swimmer struggling to find the way home. Set on the rugged coastline of Northern California, the 25-minute monologue weaves lyric storytelling, myth, and sacred text. Playful and poignant, it is an homage to Sara’s aquatic nature, her passion for the wilderness, and a life altered by ME/CFS. 

Sara’s performance will be accompanied by a community conversation about longing, loss, hope, and healing, with the entire program expected to last about an hour. A recording of the presentation will be available for a short period after the event, but only for those who registered for the event; it will not be posted to the MassME website.

Coming next month (September 15): Dr. Jill Crista Answers Your Questions About Mold. Tell your mold story (briefly) and ask your question here.

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

Young Adult Support Group  - Summer 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.

News and Updates from Our State

MA DPH Listening Session on Respiratory Illnesses and Vaccines

The Health and Disability Program at the Massachusetts Department of Public Health is holding a listening session about respiratory illnesses and vaccines on Tuesday, August 13th, from 6:00 to 7:30 PM (ET).

Their goal is to learn how to improve the experience of getting vaccinations for the disability community. Please join to share your experience, positive or negative. Register here.

Do you use a wheelchair in MA?

If you use a wheelchair and are on MassHealth, they have issued a clarification that you can use MassHealth Transportation to get your wheelchair evaluated or repaired. In addition, the parent, family member or caregiver of a child under 21 who qualifies for MassHealth Transportation may also use transportation services for direct benefit to the child. More details here.

MAESTRO Research Study at MIT Seeking Healthy Controls and People with Acute Lyme

The Tal research group at MIT is conducting a comprehensive research study on a range of biomarkers to identify who is susceptible to chronic illness. They are currently investigating five cohorts — Long COVID, suspected Lyme, acute Lyme, chronic Lyme, and healthy controls — and hope to add an ME/CFS cohort in the near future.

They need more healthy controls and more people with acute Lyme. The study involves filling out online health surveys and then a 3-4 hour visit to the MIT lab for in person tests. They are very aware of how difficult in person visits are for people with chronic illnesses and will make accommodations. You must be between the ages of 18 and 65 and able to get to MIT for the in person visit. You can fill out the eligibility form here. If you have questions, please contact Yuri Kim at ykim3@mit.edu.

August 8 is International Severe ME Day

This is a time during which we remember those with Severe ME and recognize the extraordinary challenges faced by them, their caregivers, and their loved ones.  In 2019 we lost our friend Heather Colman-McGill to Severe ME.  In her last days Heather asked of us to "Please be as vocal, public, and ferocious as your time permits in sharing my story...This situation must be heard."  Read Heather's story here.

The British organization The 25MEGroup maintains excellent information and resources about what distinguishes Severe ME from more moderate forms of the illness. 

New definition of Long COVID from the National Academy of Medicine

The National Academy of Medicine has released a new definition of Long COVID in the form of a one page summary and a longer report.

The definition is deliberately inclusive so that more people can be appropriately diagnosed. The one page summary may be useful when working with health care providers.

Long COVID Moonshot Bill Introduced

Senator Bernie Sanders (D Vermont) introduced the Long COVID Research Moonshot Act in the Senate on August 2. Cosponsored by Senators Duckworth (D Illinois), Kaine (D Virginia), Markey (D Massachusetts), Smith (D Minnesota), and Welch (D Vermont), the bill is supported by 45 organizations including MassME.

The bill calls for $1 billion/year for the next ten years to establish a Long COVID Research Program, and lays out a comprehensive program of biomedical research, public health research, surveillance, public education, and provider education. The bill contains language inclusive of ME/CFS and all IACCIs: grant awards will be prioritized to research that includes patients with IACCIs with similar phenotypes to Long COVID, like ME/CFS; organizations that represent other IACCIs will be consulted on the research plan; and the research plan will be directed to conduct comparative research across IACCIs to understand the similarities and differences between them.

Are you a Long COVID patient? Help with Medical Education

Dr. Ken Friedman is developing a case presentation on Long COVID for the Rowan University School of Osteopathic Medicine. If you are a Long COVID patient and would be willing to work with Dr. Friedman, email kenneth.j.friedman@gmail.com. Your case details would be presented but not your identity.

COVID19 Longhauler Advocacy Project: Tell Your Story

The COVID19 Longhauler Advocacy Project is working on an effort to raise awareness about Long COVID through patient and caregiver stories and videos. This effort is in collaboration with a major pharmaceutical company. If you are a US resident and have Long COVID (or are a caregiver) and are interested in telling your story, please fill out this interest form.

Mark Your Calendar: NIH RECOVER Initiative Phase 2 Kick-Off Meeting, September 23-25

NIH is gearing up for the second phase of the Researching COVID to Enhance Recovery (RECOVER) Initiative which will focus on clinical trials to evaluate treatments. They will host a kick-off meeting on September 23 to 25 (in person and virtual).

They invite researchers, healthcare providers, people affected by Long COVID, advocacy organizations and federal policymakers to discuss the structure and governance of Phase 2, assess the current research landscape and help plan future Long COVID clinical trials. More details will be coming soon. Sign up for email updates here.