On May 25 in San Francisco, a group of ME/CFS patients & advocates staged a ‘mini-demonstration’ to raise awareness of the need for increased government-funded ME/CFS research. Their protest in front of the Health & Human Services offices (modeled after an earlier demo in Washington), garnered good media coverage that might inspire more mini-demos in other cities and countries.
Positive results so far include:
• A helpful San Francisco Chronicle article on the event ("Chronic Fatigue Patients Protest Lack of Funding," by Erin Allday). Hundreds of readers have shared the article by Twitter and Facebook, and Erin and the Chronicle can still be thanked for this coverage.
• A Ms Magazine blog article on Rivka Solomon, ME/CFS, and the mini-demo campaign, which was Rivka’s brainchild (“Rivka Solomon Acts Up, Chronic Fatigue Be Damned,” by Paula Kamen). Kamen reiterates Rivka’s challenge to other patients, encouraging them and their advocates to stage similar mini-protests at the 20 other HHS and CDC satellite and regional offices across the US.
• A meeting between the San Francisco demonstrators and Eric Alborg, Regional Outreach Specialist of HHS’s Region 9. The group talked with him about the concerns and needs of people with ME/CFS, and he suggested ways they can raise the profile of these concerns with local institutions and legislators. He also accepted and agreed to deliver copies of a letter addressed to HHS leaders Secretary Sebelius, NIH Director Collins, NIAID Director Fauci, and Herb Schultz, Regional Director of HHS Region 9.
The letter included a list of basic ME/CFS community needs/demands, plus a personal statement by San Francisco demo co-organizer Bobbi Ausubel, which reads:
“I am the mother of a daughter with the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or ME/CFS, which has very severely limited my daughter's ability to lead a simple work and social life for over 20 harsh years. I have been her primary support. Much of the time she has been so sick she is often homebound or bedridden with disabling symptoms, not just "fatigue"! Our family's life activities and resources are centered around the health needs of this daughter (and sister) we love.
“We expect more support from our government by way of research and clinical trials for this disabling disease that affects more than a million Americans.
“Most people with ME/CFS are too ill to be standing outside HHS today for a demonstration. Those of us gathered here are speaking for all who are ill, and we demand to have more research and clinical trials now.” – B. Ausubel
Awareness - A BIG IDEA
These advocates are demonstrating, not just to HHS but to other patients all over the world, that even a small group can drive a change in public perception.