- Last Updated: 21 December 2018 21 December 2018
At this time of Thanksgiving, it is good to reflect on the good things this year has brought to us. For those of us in the Massachusetts ME/CFS & FM Association, a year is often full of personal ups and downs. It is the same in the ME/CFS/FM environment, but in 2018 we have seen much that is good. Real progress is being made in research, advocacy, and public awareness about ME/CFS. The momentum is building!
For our Association, 2018 was a ground-breaking year.
- With Rivka Solomon’s incredible help, we held 11 screenings of Unrest all over Massachusetts, reaching over 1000 people. Our 5 presentations targeting health care providers and researchers reached over 500 people.
- The Northeastern University School Health Academy, the Massachusetts Rehabilitation Commission (MRC), and Mass General Hospital’s Institute for Health Professions asked us to provide educational programs for their members, staff, and students in the coming winter and spring.
- We have an opportunity to educate the staff of MRC Disability Services; these are the folks who turn down 90% of ME/CFS disability applications at the first two levels, adding at least a year and much anguish and expense to getting disability benefits for ME/CFS patients.
- Our annual meeting and lecture on Nov 3rd provided an opportunity for 80 patients and family members to meet one another and feel part of a supportive community, as well as hearing an informative and entertaining talk about the tortured history of the PACE trials by David Tuller.
- We started a "virtual" peer support group, ably led by 3 of our members.
- Eight of our members have been interviewed by Llewellyn King for segments on ME/CFS Alert, and interviews with two of our members have been posted on the Jackson Laboratory ME/CFS blog.
On the advocacy front:
- On the National ME/CFS Fly-In Day in May, ably led by Bob Robitaille and Susan Buckley, with help from Rivka Solomon, members participated in educational meetings with staff and constituents witht he entire MA congressional delegation: nine MA House districts and two Senate offices.
- We worked with #MEAction, SMCI and Sen. Markey’s office and Sen. Susan Collins (R-ME) to introduce a resolution in the Senate (Sen. Res. 508) in support of ME/CFS. This was not voted on this session and Sen. Markey will introduce a new resolution early next spring in time for a vote (hopefully) before May 12 (ME/CFS Awareness Day).
- Our Association continues to collaborate with SMCI and #MEAction, and to participate in the U.S. Action Working Group, providing a role model for advocacy and state level activities for individuals and smaller groups from 25 states.
- At the state level, we joined the Telemedicine Coalition and our program at the State House on April 24 was in support of the Telemedicine bill, which, if passed, would allow patients to see their doctors via computer videoconferencing. That was eventually folded into the larger Health Care bill which passed in the Senate but not the House.
Of course, there have been some disappointments.
- Just when CFSAC, for which we were a liaison member with Leah Williams representing us, was really getting traction it was abruptly and unexpectedly terminated by HHS. HHS cited several initiatives started by CFSAC and implied that its work was done (!). It seems unlikely this decision will change, leaving several important projects cut off mid-stream, and formal channels of communication with our partners in federal agencies closed. We signed a joint letter from advocacy groups to the Secretary of HHS asking to have CFSAC reinstated (which we don’t believe it will be). Sen. Markey’s office is working on a Senate letter to HHS requesting more information about reasons for the termination of CFSAC and possibilities for the future.
- And we still have a great shortage of health care providers in MA who can treat our patients with understanding and compassion, one of the essential services a state-level organization needs to provide. Hopefully, our educational efforts will soon pay off and we will see more providers willing to take on the challenge of helping people living with this often-devastating disease.
There are still challenges to be met –
- Expanding our public awareness, advocacy, professional education and patient services programs;
- Providing more support groups, both in-person and virtual;
- Procuring in-home services for severely ill patients, helping patients whose years of illness have devastated them financially to connect with resources.
- Finding more help for FM patients.
It is especially heartening that the ideas and support for these initiatives are coming from our members!
To do all of this, and more, in the coming year we have begun to address our Association's needs – building our capacity with volunteers and possibly some paid staff, setting clear priorities, and strengthening our financial support. I’m confident that with the Board you elected this month together with our growing cadre of volunteers, we can meet these goals and take advantage of new opportunities.
On a personal note, this is my final letter to you as President of this Association. I have been honored to serve for the last six years and am proud of what we have done together. I look forward to continuing to serve on the Board while passing on the major responsibilities of leadership to our very capable and enthusiastic new officers, Board members, and volunteers. You will be hearing from our new President, Leah Williams, soon.
Getting to know so many of you and hear your stories has been a privilege and inspires me every day. Thank you.
With warmest good wishes to you,