Advocacy—its importance and its impact

What is MassCFIDS? was the title of a report prepared and presented for members and guests in attendance by Ms. Charmian Proskauer. Since MassCFIDS was founded and registered as non-profit charity 501(c)3 organization more than a quarter of a century ago, many newer members and guests have asked to learn more about its past, current work, and future goals.

MassCFIDS is the short name for the Massachusetts CFIDS/ME & FM Association. Fibromyalgia (FM) was added to the Association's mission (and name) during the 1990's. The history of the Association is available on the website, under the topic "History of the Association."

MassCFIDS has an all-volunteer Board (currently of 14 members) which holds bi-monthly meetings. Officers are elected from within the Board. All the work of the Association is done by volunteers.

Ms. Proskauer shared with the audience how she had been initially recruited several years ago to help create a new website for Association. Eventually, she was elected to the Board and now oversees several committees. She also spoke about her desire to become an advocate for the illness; she is a family member of someone who has CFS. Finding herself with a little extra time, she wanted to work with others towards something that would make a difference-the Association fulfilled this need.

MassCFIDS is the oldest patient-run CFS organization in the country and its mission has remained the same, although the organization has evolved over time. Our members and volunteers continue to work and advocate for patients and their families in many ways: conveying information through the website and an E-newsletter; responding to questions by emails or phone calls; providing community outreach/patient services; speaking out (or writing) on issues which may negatively impact patients; and sponsoring educational events.

A note about the patient and/or patient's family contacts we receive—70% of these are requests for services and 2/3 are for physician referrals. To be able to provide patient outreach and programs, it is important that we continue to build up our membership; but there is also strength in numbers which really matters when it comes to advocacy.

Dr. Gurwitt and Ms. Proskauer echoed the same message—the impact of advocacy may not be immediately realized, but it can have a far-reaching effect and pay off in many ways. Statistics collected on the Association's website traffic reveal the extent of its global reach-during the past 12 months there were 20,000 unique visitors from 151 different countries.

The video of Dr. Anthony Komaroff's April 2010 lecture has been viewed from around the world and translated into 4 languages. It has served as a catalyst for important advocacy initiatives, like those embarked on by the Norwegian health ministry.

The Association also played a direct role in helping Japan form its first national ME/CFS conference.

It maintains close contact with the CDC, through Dr. Elizabeth Unger, and overall, it has shown a good, strong reach into a lot of areas, concluded Ms. Proskauer.

MassCFIDS will evaluate on-going advocacy initiatives, participate selectively, and provide opportunities for patients AND their family members, relatives or friends to participate. Our goal is to expand advocacy in Massachusetts.