- Last Updated: 29 December 2015 29 December 2015
“It’s so good to be with other people like me, who know what this is like.” This was a comment from an ME/CFS patient at our Association’s recent public event, where over 70 of us gathered to view the new documentary “Forgotten Plague: ME and the Future of Medicine.” The film’s title says it all: the seriousness of the illness, the feeling of being overlooked, forgotten, deliberately ignored or even rejected, and at the same time, the hope that the new kinds of research now happening will bring more understanding and better treatments.
For almost 30 years, Massachusetts CFIDS/ME & FM Association has been here for ME/CFS and Fibromyalgia patients: supporting, educating, and advocating.
- In 2014 we helped over 200 individuals who requested names of doctors knowledgeable about FM, ME/CFS or Lyme, asked for guidance on disability applications, or needed support group information.
- We continued our work on behalf of children & youth, presenting testimony on pediatric ME/CFS to the Institute of Medicine in January, and educating public health and school nurses in Massachusetts at conferences this spring and summer.
- We stayed informed about medical research so we can bring the most relevant information to patients, and we raised funds in the spring to support Dr. Ian Lipkin’s Microbiome Discovery Project.
- We stepped up our advocacy at the federal level, participating in the FDA’s “Voice of the Patient” activities for both ME/CFS and FM as well as addressing other federal initiatives.
- We actively reached out to other patient organizations and individual advocates so we could coordinate our efforts and speak with a stronger voice for patients.
- We kept everyone informed through our monthly email newsletter.
I am writing to ask you to consider making an end-of-year gift to support this work. We are an all-volunteer organization and every dollar goes to our programs.
We have exciting plans for 2015, including:
- Presenting a major program on Fibromyalgia
- Continuing our patient services
- Attending medical conferences in Massachusetts to distribute information directly to health care providers
- Continuing active collaboration with other patient organizations, and using our advocacy to promote the establishment of Centers of Excellence
- Launching our new website, making the information there more accessible on smart phones and tablet computers.
Please consider making a donation to help with this work. Every gift helps, and gifts of any size are much appreciated and gratefully received. You can give online at www.masscfids.org/donate, or send a check to Massachusetts CFIDS Association, P.O. Box 690305, Quincy, MA 02269-0305, USA.
ME/CFS and FM patients, who are often very ill and struggle to get through each day, need other voices to speak up on their behalf. Together, we can be that voice.
President, Massachusetts, CFIDS/ME & FM Association
~Working to improve the lives of all people affected by ME/CFS/FM, advancing awareness, care, treatment and research.
P.S. There are also other ways you can help:
- Become a Member or Volunteer.
- If you purchase online through Amazon.com, you can set up our Association as your preferred charity to receive a portion of your sales through Amazon’s Smile program. Just follow the easy instructions on our home page, www.masscfids.org.
- Follow us on FaceBook and share posts that interest you with your family and friends.
P.P.S. You can always Contact Us if you have a suggestion, comment or request!
Finally, if you haven’t already seen it, this article written by David Tuller, which appeared in the Science section of the New York Times on November 25, is well worth reading: http://well.blogs.nytimes.com/2014/11/24/brains-of-people-with-chronic-fatigue-syndrome-offer-clues-about-disorder/