Thank you for voting! We are pleased to announce that we are adding two new board members in 2023!

Click here for the bios of the 2023 MassME Board of Directors.

Want to get involved?

We have a variety of volunteer opportunities for you to share your unique talents.  Visit our Volunteer Page for more information.

Tuesday, December 13, 2022, at 3:30 P.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 contibution of $25 or more will include annual membership.

Please Note: There is no Sunday Conversation in December.

Stay tuned for information about Sunday Conversations in 2023!

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

Social Security Disability in Long COVID and ME/CFS
New and updated information!

Visit the Social Security Disability page for these new articles:

Long COVID and Social Security Disability  The guidance provided by the Social Security Administration for the evaluation of disability claims by persons with Long COVID
 

Substantial Gainful Activity  How does Social Security determine whether a person is disabled and qualified to receive disability benefits?
 

Working on SSDI  The Question of Working When a Person is Either Applying For, or Going Back to Work, While on Social Security Disability Insurance (SSDI)
 

Your Questions Answered!  Questions and Answers from the Chat – Sunday Conversation Feb. 2022, “Applying for Social Security Disability”

MassME is an original member of the Long COVID Alliance

Co-founded by Solve M.E., the COVID-19 Longhaulers Advocacy Project, and the Global Pandemic Coalition, LCA now has over 1,000 member organizations and individuals.

The goal of the LCA is to facilitate connection, communication, and collaboration among diverse partners working in the Long COVID space, and to serve as a platform to amplify the voices of those with Long COVID and associated conditions like ME/CFS.

The LCA has recently reorganized and moved to quarterly partner meetings, but continues to issue a bi-monthly email update. Partners and volunteers will focus on specific and timely initiatives like improving clinician education, supporting specific legislative goals, and documenting the harms of medical gaslighting and barriers to diagnosis.

For more information about the LCA, visit their website where you can find excellent resources for patients and clinicians, news, event and webinar listings, and updates from partner organizations like MassME.

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

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.

Clinical trial in Boston is recruiting participants!

This study urgently needs 2 more people who have been diagnosed with ME/CFS to participate in a control group for a study on using saliva to diagnose Sjogren’s disease. The ME/CFS control group will be analyzed separately to see if components in saliva can also be used as a biomarker for ME/CFS.

This is a non-invasive study and involves one in-person visit to Tufts Dental School in Boston for a dental exam, and providing saliva and sweat samples. Participants will receive a $25 Target gift card. Study flyer with number to call for more information and an appointment is here.

The Principal Investigator, Dr. Athena Papas, is a research dentist who has been awarded many grants. As far as we know, she is the only researcher interested in dental problems in ME/CFS.

Opportunity to help guide programming at SolveME

The Lived Experience Task Force (LET) will serve as leadership partners with Solve M.E. They are actively seeking community partners who are:

• Partners affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); these partners can be patients or caregivers
  
• Partners affected by Long COVID and associated conditions; these partners can be patients or caregivers
  
• Partners from communities that have been historically economically and/or socially marginalized and are currently affected by ME/CFS or Long COVID
  
• Partners available and willing to collaborate and receive equitable compensation

To apply, click here. Deadline: Sunday, January 8, 2022. 

At-Home Lab Services

(This resource and personal recommendation was submitted by a MassME member.)

Is getting somewhere to get lab work done really difficult or impossible for you? In the Boston area, there are a couple options to have lab work done at home - Global ProLab and Mass Mobile Phlebotomy.

We have used them both. Mass Mobile Phlebotomy has been very good. They seem like a larger company and are well organized.

We are big fans of Global ProLab. Jackie, who runs the Boston franchise, (we’re on a first-name basis now) is by far the best phlebotomist we’ve worked with in any setting - readily finding a vein, administering a pain-free stick, and switching super quickly between vials for a larger order. He was also kind enough to fit in an extra trip on short notice when there was a mixup once, charging only for mileage.

Global Pro Lab’s website claims that they cover all of New England. For these services, you call and arrange to have the order faxed to the service. As far as we can tell, these services are not covered by insurance. Around Boston, the price which includes both a visit fee and mileage was in the $100-150 range - not cheap, but if you’re bedbound and can afford it this is a wonderful resource.

Invisible Illness Health Tracker

Visible: The activity tracking platform for illness, not fitness.

There is a new app in beta testing. This tool uses your cell phone to collect health data which can help monitor changes in your body, pace activites, and manage symptoms.

Each month we feature a story from a MassME member. We hear from patients, caregivers, and those who help people who live with ME/CFS and FM. It is our hope that through sharing our experiences, we will gain connection, validation, and perhaps feel a little less isolated.

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