- Last Updated: 30 October 2021 30 October 2021
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.
- 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.
- Last Updated: 25 February 2021 25 February 2021
“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.
- Last Updated: 18 July 2021 18 July 2021
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.
- Last Updated: 23 June 2017 23 June 2017
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
- Last Updated: 06 January 2016 06 January 2016
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."