2023-5 May Newsletter
- Details
- Last Updated: 08 May 2023 08 May 2023
In this month's newsletter:
- Upcoming Events
- MA Bridges Illuminated for World ME Day - May 11
- Massachusetts Long COVID Commission
- Millions Missing Protest - May 12th
- Advocacy Week Recap
- Newsworthy Events and Links
- Lyme Disease Awareness
2023-4 April Newsletter
- Details
- Last Updated: 10 April 2023 10 April 2023
In this month's newsletter:
- Upcoming Events
- 2023 Health Needs Assessment Community Listening Forum
- Our Letter to RECOVER Clinical Trials
- Re-post: MassHealth Renewals
- Newsworthy Events and Links
- Member Spotlight: Julie Bach
2023 Health Needs Assessment Community Listening Forum
- Details
- Last Updated: 01 April 2023 01 April 2023
The Massachusetts Department of Public Health wants to hear from people in Massachusetts about the health care needs of disabled people in the Commonwealth to inform future initiatives. MassME wants to make sure that people who are disabled by complex, chronic illnesses such as ME/CFS, Long COVID, post-treatment Lyme, multiple chemical sensitivities, etc., and those with disabling symptoms such as dysautonomia, cognitive impairment ("brain fog"), etc., are able to have their voices heard.
We are holding two discussion sessions for small groups of 10-12 people, the first on Thursday April 20 at noon ET, and the second on Tuesday May 2 at noon ET. If you are a person who has become disabled due to one of these conditions, or a caregiver, we invite you to participate. Registration will be capped at 16 for each session, so if you are interested, we encourage you to register soon.
Register for the Thursday, April 20, session
Register for the Tuesday, May 2, session
Read more: 2023 Health Needs Assessment Community Listening Forum
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.