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.

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.

IT Manager

Job description

Are you passionate about the use of technology in the nonprofit sector? We want someone like you to join our nonprofit as a Volunteer IT Manager. In this position, you would ensure that our nonprofit makes the most of technology to deliver our mission. This role spans the strategic and the operational, as you would help us redesign and rebuild our Joomla website, advise on how best to present our extensive information resources and manage our growing CiviCRM database, as well as present breaking news and communicate with our members and donors, and more.

This is an unpaid, volunteer position. The time commitment is approximately 10 - 20 hours a month for a minimum of 12 months. More time would be needed in the early months to help us successfully complete our new website. We have volunteers ready to help but in need of training. Work from your home on a flexible schedule, with occasional meetings in the greater Boston area.

Desired Skills and Experience

Our ideal candidate is an enthusiastic, smart, and dedicated information technology professional, excited to share her or his expertise to help our nonprofit. You are eager to learn about our mission and the special needs of our constituents that drive us, and how they translate into the technology that sustains our Association. You can assist the board and volunteers in building the expertise we need to keep moving forward. You are a quick learner and great teacher, and have prior experience in web design using templates, content management systems and back-end database. Joomla and CiviCRM experience is highly desirable but not required. Prior nonprofit experience is not required, but desire to work in the non-profit world is a plus.

If you are interested in this position, please Contact Us.

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.