- Last Updated: 30 August 2017 30 August 2017
Board member Leah Williams advocated for more funding for ME/CFS research during several meetings with Massachusetts members of congress in Washington DC in mid-March 2017. These meetings were some of the 30 meetings held by a group of advocates, coordinated by the Solve ME/CFS Initiative and the Congressional group of the U.S. Action Working Group.
Left to right: Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association; Carol Head, President of SMCI; Senator Ed Markey (MA), Emily Taylor, SMCI Director of Advocacy and Public Relations; Mike Atherton, member of SMCI board of directors, and Gail Cooper, #MEAction Congressional Chair
Left to right: Carol Head, President of SMCI; Emily Taylor, SMCI Director of Advocacy and Public Relations; Senator Elizabeth Warren (MA) and Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association.
For a more complete report on the week's activities, see "Solve ME/CFS Initiative storms DC to tackle the Federal Budget."
- Last Updated: 06 December 2018 06 December 2018
Disability and Social Security with ME/CFS, Interview with Robert Robitaille | ME/CFS Alert Episode 100
Robert Robitaille discusses his personal experience fighting for disability benefits for his daughter, Robie who has ME.
Living with ME/CFS: Robie's Story | ME/CFS Alert Episode 99, August 26, 2018
Robie talks about her daily life with ME.
Llewellyn King talks with members of our Association in his ME/CFS Alert video series, recorded on March 24, 2017.
NEW! In this conversation, Libby tells of her long journey from being bedridden with ME to being able to function, albeit at a reduced level from when she got ill. She says that a series of holistic therapies, including a special diet, have been working for her.
Libby's experience with ME | ME/CFS Alert Episode 90, published on June 1, 2017
The work of the Massachusetts CFIDS/ME & FM Association | Episode 86, published on March 29, 2017
ME/CFS Diagnosis, children with ME, and the medical community with Alan Gurwitt, M.D. (Episode 87), published on April 12, 2017
Children with ME, Being an Advocate and Advice for Parents | ME/CFS Alert Episode 88, published on April 23, 2017
More to come...
- Last Updated: 01 February 2017 01 February 2017
January 12, 2017
Thank you for taking my comment. My name is Charmian Proskauer and I am currently serving as president of the Massachusetts CFIDS/ME & FM Association. I speak today about the urgent need for clinical education about ME/CFS.
A couple of examples. First, a few weeks ago I was on a radio program with representatives from other local charities. Unlike the others, I didn’t want to talk about our need for money, or for volunteers, or even talk much about our programs in support of patients with ME/CFS. What I most wanted to do was alert listeners to what ME/CFS was, its symptoms and severity, in case any of them might be among the 28,000 people in our state who probably have ME/CFS but do not have a diagnosis, who might be suffering from a disabling illness with no idea what it is, or how to find a doctor who will pay attention and provide help. Yet I did not do this….why? Because we know of only around 30 doctors in the entire state, including all specialties, who we feel confident understand ME/CFS and will treat patients adequately and with respect. I was afraid that patients who suspected they had ME/CFS and visited their doctors would be subjected to the dismissive attitude about this illness that is so prevalent in the medical community and would be discouraged from seeking further help, and this would do them more harm than good.
Secondly, over the last several years our Association has been educating school nurses about ME/CFS in school age youth. School nurses are in an excellent position to identify children who may have ME/CFS, and they have been very receptive to our information. However, the school nurse cannot act alone to diagnose, provide treatment for the child, or insure that the child receives appropriate educational accommodations. The child’s doctor must be involved and we have been told many times that there is no pediatrician or family doctor in the child’s town who is comfortable diagnosing ME/CFS, or who knows what school accommodations would be useful, so the child goes undiagnosed and untreated, with his or her success in school threatened. This leaves the nurse feeling helpless and the families vulnerable to inappropriate child abuse accusations.
The June 2015 Institute of Medicine Report has an entire chapter outlining a dissemination strategy for medical education about ME/CFS. We are asking that CFSAC or a federal agency be designated as soon as possible, to take responsibility for the development and execution of a plan./ This is a critical step in getting patients, whoever and wherever they may be, the care they need and deserve./ Our Association stands ready to help./ We have already begun to work with our local HRSA officials to explore possibilities for getting information about ME/CFS into federally-qualified health centers in New England.
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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.