On May 10, 2011, 6 individuals with ME/CFS, each sick and disabled from 9 to 21 years, demonstrated in front of the U.S. Department of Health and Human Services (HHS), 200 Independence Ave, S.W., Capitol Hill, Washington D.C. They carried with them just one sign, a 25-foot banner that read:
"Obama, Sebelius, HHS: Shame on you for abandoning 1 million sick and disabled Americans with ME/CFS and XMRV (Chronic Fatigue Syndrome and a newly discovered retrovirus). Clinical trials now!"
The representatives from the ME/CFS community were Kitty Lorenz, Karen Ravitz, Sharon Stapleton, Kat Stephens, a patient from New England, and the demo organizer, Rivka Solomon. They ranged from 21 to 70 years old and came from Connecticut, Massachusetts, North Carolina, Texas and Pennsylvania. Each spoke from the heart for the world's ME/CFS community (see script below).
A hearty "Thank you, you were amazing," to the HHS protesters. They were brave, ready for action, fun and quite photogenic individuals who signed on just days before, or the day of, the demo. At least 3 of the 5 are MCWPA volunteers (MC/CFS Worldwide Patient Alliance - http://mcwpa.org)….
Who Will Take the Next Step?
The biggest thank you, however, is reserved for those who will take the next steps, those who will hold their own mini-demos. It does make a difference, and it will have an impact. [For a full description of how the event unfolded, the calls the demonstrators made to clear the way vis-a-vis local law enforcement and where they could legally position themselves, see Chris Cairns' CFS Patient Advocate Blog.] In the US, there are plenty of places to demonstrate:
• 10 HHS regional offices (http://www.hhs.gov/about/regionmap.html) in Boston, MA; New York; Philadelphia, PA; Atlanta, GA; Chicago, IL; Dallas, TX; Kansas City, KS; Denver, CO; San Francisco, CA; Seattle, WA.
• 10 CDC satellite offices in Anchorage, AK; Cincinnati, OH; Fort Collins, CO; Hyattsville, MD; Morgantown, WV; Pittsburgh, PA; Research Triangle Park, NC; Puerto Rico; Spokane, WA; Washington, DC
Each of these sites is calling for a small group of 1 to 5 or more ME/CFS patients and their families to stand in front, on the sidewalk, demanding to be heard - even for just 15 minutes.
Each head of security of each site will be mandated to let their national headquarters know that there was a person there that day, holding a sign in front, protesting HHS/CDC's policies on ME/CFS.
Eventually, with enough mini-protests, this will impact policy.
Why are we protesting at the Dept of Health and Human Services?
Advocating for people with ME/CFS - "Chronic Fatigue Syndrome"
• We are Americans who have spent much of the past 10-30 years bedridden and homebound with a severe disability that was given a belittling name by our government, Chronic Fatigue Syndrome (CFS).
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is the full name of our illness.
• It is an "invisible disability": We often look fine, but are severly disabled, many of us are unable to leave bed.
• This belitting name, "Chronic Fatigue Syndrome," sounds like we are "just tired" and thus it does not reflect the seriousness of our disease. But it certainly makes it easy for our government, medical community and media to dismiss and ignore those who suffer with it.
• However, if you have ME/CFS it is not easy to ignore. It stops your life. We lose our ability to work, attend school or have a social life. Many of us are bedridden and using wheelchairs. Some of us have died early from leukemia, other cancers or health complications.
• There are 1-4 million Americans with this illness -17 million people worldwide.
• ME/CFS drains $18 billion to $23 billion annually from the US economy.
• The US government, media and medical communities have delegitimized the illness and falsely psychologized patients.
• This has resulted in very little federal money spent on research to discover the cause, treatments or cure of this illness.
• Then, in 2009, there was a research breakthrough, and scientists found a retrovirus (called XMRV) linked to CFS. A retrovirus is a virus that never goes away (like HIV).
• Still, the FDA has not banned people with ME/CFS from donating blood (the Red Cross has).
• Today, we are here protesting to demand that Obama and Sebelius (Dept of HHS):
- Protect the nation's blood supply: Ban peole with ME/CFS from donating blood.
- Fund research via Centers of Excellence just for this illness, including the Whittemore Peterson Institute (the lab that discovered XMRV's link to CFS).
- Fund fast-track clinical trials for treatments, medications.
- Act on the recommendations of CFSAC (the Chronic Fatigue Syndrome's Advisory Committee). They have ignored these recommendations for years, while patients and their families suffer with a devastating illness.
FOR QUESTIONS & INFO CONTACT:
Rivka (at) ThatTakesOvaries (dot) org