Greetings Members and Friends:

2022 was a busy year for the Association. If you missed our Annual Report to Members, you can view it in its entirety here. Or, quickly flip through some of the year's highlights here.

We expect to be even busier in 2023! We will be continuing our monthly Sunday Conversations programming, have increased our support group program to include weekly sessions, and added several new volunteers to help meet an ever-increasing demand for one-on-one counseling and health care provider referrals.

We will be expanding our outreach and support efforts to long COVID and Lyme communities, engaging more directly with Massachusetts community health centers and yes, after years of "wishing," we will finally be modernizing our website!

We encourage you to review our volunteer page to explore opportunities to be a part of this exciting work.

As always, we welcome your financial support, which we need now more than ever.

Along with our colleagues on the board of directors, we wish you all improved health and hopeful energy in 2023.

Phil Chernin and Susan Buckley
MassME Co-Presidents

Selected readings from The Long Haul, with Ryan Prior and Cynthia Adinig

Sunday, January 22, 2023, 4 p.m. EST

Author Ryan Prior and Long COVID advocate Cynthia Adinig will present selected readings from Ryan’s new book, The Long Haul: Solving the Puzzle of the Pandemic’s Long Haulers and How They Are Changing Healthcare Forever. Following the readings, they will respond to questions and comments from the audience.

Ryan Prior is a journalist and author who works for CNN and the think tank The Century Foundation. His long history of ME/CFS advocacy includes directing Forgotten Plague, a feature length documentary about his own journey as a ME/CFS patient.

Cynthia Adinig is the Co-Founder of BIPOC Equity Agency. She became a Long COVID advocate after her experience battling bias while attempting to obtain medical care. Her wide-ranging advocacy includes work on Capitol Hill and working with ME/CFS and Long COVID researchers to improve racial and disability inclusion for studies. She serves on the Board of the Solve ME/CFS Initiative.

Rivka Solomon, a long-time MassME member and ME/CFS advocate, and now also a Long COVID advocate, will host/moderate the program.

This is a virtual event via Zoom. There is no fee for this program, as we are donation based.

The program will be recorded for later viewing.

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

Saturday, January 28th at 10:30 A.M. ET on Zoom

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.

The group is run by Kerry Lang, LMHC. Kerry is a MA licensed mental health counselor with experience leading groups and workshops for those with chronic illness, specifically those with Lyme disease, and more recently Long COVID and ME/CFS.

Please Note: Due to professional licensing requirements, we are only able to offer this program to Massachusetts residents.

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.

This group is free for members. There is a $10 suggested donation for those that can afford to contribute. A contribution of $25 or more will include annual membership.

Have you seen a doctor or other healthcare provider you would recommend to another patient?

Please read a letter from Ken Casanova, and help us improve our physician referral database by sharing your experiences.

If you wish to recommend a physician or other health care provider who has helped you, please fill out our online Provider Recommendation Form.

Alternatively, you may download and print the more detailed Health Care Provider Information Questionnaire, fill in as much information as you know, and mail it in to the address at the top of the form.

Advocacy Week 2023 -- Monday, April 17th to Friday, April 21st

Solve ME is gearing up for Advocacy Week 2023!  

The format is different this year with in person visits with the offices of US Senators on Tuesday, April 18th and virtual visits with US Representatives on Thursday, April 20th.

Monday, April 17th is a training day, Wednesday, April 19th is social media advocacy day and Friday, April 21st is the EMPower symposium.

Learn more here, sign up for in person meetings here (NOTE: requires travel to Washington, DC), and sign up for virtual meetings on Zoom here. Deadline to register is March 27th.

Solve ME Webinar Series

Solve ME continues their excellent webinar series.

Coming up on Monday, January 23rd at 12 pm PT, author Meghan O'Rourke will discuss her New York Times bestseller "Invisible Kingdom: Reimagining Chronic Illness."

Previous presentations include Challenges in Ensuring Equity In the Study and Treatment of ME/CFS and Long Covid and many more posted on Solve's YouTube channel.

ME/CFS job accommodation resource provided by Askjan.org

 The Job Accommodation Network outlined a list of accommodation ideas for ME/CFS patients in this article.

New Resource for Medical Professionals Treating Severe ME 

A group of clinicians and researchers with experience treating individuals with severe ME recently published a paper in the Journal Healthcare.  A summary of the salient points from the paper have been turned into a "Letter to Healthcare Professionals" that can be downloaded and freely copied by healthcare providers. This letter can also be used by patients and their caregivers to help educate and guide their providers

Take action to help secure funding for POTS

POTS is a common, often disabling symptom of ME.  Please consider signing on to the efforts of Dysautonomia International to advocate for a cure.

Repost: The Healey-Driscoll Public Health Transition Team wants to know what you care about and have made it very easy to tell them.

There is still time to participate! Just click here and complete the form.

At the bottom of the form, check the box that says "Safe and Healthy Communities For All Ages".

This will ensure that your comments go directly to the Public Health Transition Team. Then add your comments. For a list of the transition team members click here. For some ideas on what to put in your comments, click here.

Would you like to be featured in a Member Sportlight?

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

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