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.

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.

Links to recent U.S. government activity on ME/CFS

NIH teleconference with ME/CFS advocates, March 8, 2016, audio file and transcript

Dr. Anthony Komaroff "Beyond the Data" video interview, follow up to CDC's Grand Rounds presentation

CDC Grand Rounds Presentation, "Chronic Fatigue Syndrome: Advancing Research and Clinical Education," Tuesday, February 16, 2016

Institute of Medicine report:
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, February 10, 2015

National Institutes Of Health, Pathways to Prevention (P2P) Workshop report:
Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, December 9–10, 2014

Agency for Healthcare Research and Quality, Research Review (“Evidence review”):
Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, December 9, 2014

U.S. Food and Drug Administration, Patient-Focused Drug Development Initiative report:
Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, September, 2013.

National Institutes Of Health, State of Knowledge Workshop report:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research, April 7-8, 2011

Does Advocacy Work, P2P edition

With all the discussion around the Institute of Medicine ME/CFS report, have you thought about the Pathways To Prevention report lately? The final report, to give guidance to the National Institutes of Health on future funding ME/CFS research (including a recommendation for funding Centers of Excellence for ME/CFS) and to review treatment recommendations, has been delayed. Find out why in "Does Advocacy Work, P2P Edition - Good News and Bad News."

UPDATE: The Office of Disease Prevention promises to change the way public comments are handled in the future. "For future P2P workshops, public comments will be posted online as they are submitted to enhance the transparency of this process and to ensure that all comments are received by the panel in a timely manner."

Read our letter to the Office of Disease Prevention (ODP), and ODP's response.

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.