Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Volunteer Coordinator

About this opportunity

The Massachusetts ME/CFS & FM Association is seeking a Volunteer Coordinator to recruit, orient, guide and appreciate the volunteers who power the Association. The Coordinator will work closely with selected Board members to develop recruiting plans, establish relationships, orient and guide new volunteers, set up a system to track volunteer activities, and plan an annual Volunteer Appreciation event. This position requires a 12-month commitment. Time is flexible (approximately 20 hours/month) and work will be done from home with occasional in-person meetings in the greater Boston area. This position is a great opportunity to showcase your skill at team-building and achieving desired outcomes.

Qualifications:

  • Self-starter; outgoing personality; strong communication skills.
  • Previous experience working with groups of volunteers.
  • Intermediate computer skills, including familiarity with using databases and the internet; must have own up-to-date equipment.
  • Commitment and enthusiasm for volunteering; sensitivity to circumstances of individual volunteers.
  • Focus on successful outcomes.
  • Willing to learn about ME/CFS and Fibromyalgia.

You don't have to be a patient to help in this way! This is perfect for a healthy friend or family member who has experience managing groups of volunteers, and a great resume-builder. If you are interested, please Contact Us.

Long COVID - Lessons Learned from ME/CFS

What is Long COVID?

Over 31 million cases of COVID-19 have been reported in the U.S., with well over 566,000 deaths.

About 10 – 20% of people who have COVID-19, including people who have only mild symptoms, do not fully recover. Many of these people experience a variety of symptoms for many months. This is being called “Long COVID.”

Three million or more people in the U.S. may develop Long COVID. In Massachusetts 60,000 - 100,000 people may have Long COVID.

Long COVID is a “post-viral” illness.

Read more: Long COVID - Lessons Learned from ME/CFS


Why the lighthouse?

“There is a ... fatal spot upon the coast of Massachusetts, where many a brave heart and many a gallant ship lie buried in one common grave ... and it is really very remarkable that this most striking omission...has not before been observed."


These words, written by a Civil Engineer in a report to Congress in the mid-1800's, resulted in construction of the Sankaty Head Lighthouse located on Nantucket Island in Massachusetts.

For patients dealing with ME/CFS & FM, the lack of knowledge and education in the medical community is also a “most striking omission.” All too often, patients are left adrift with no idea where to turn. The absence of recognition and understanding by the general public only serves to make the challenge of living with these illnesses that much harder for these “brave and gallant” souls.

Since 1985, the goal of the Massachusetts ME/CFS & FM Association has been to educate and advocate for patients whose lives have been devastated by these illnesses. Much like the Sankaty Head Lighthouse, we exist to provide the assistance needed to help people living with ME/CFS and fibromyalgia find their way.

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.