Sunday, March 14, 2010

An engaging project calls for volunteers.

Edit: Project canceled due to illness and lack of healthy, energetic volunteers.

It effects more Americans than AIDS, breast cancer and lung cancer put together. It causes more functional impairment than diabetes, heart failure or kidney disease. It creates a level of disability comparable to Multiple Sclerosis, chemotherapy or the final stages of AIDS. It strikes men, women and children. It costs the US $26 billion annually. It has occurred in epidemic clusters and may be caused by a transmissible retrovirus. Yet it receives inadequate funding for research, treatment and education, shunted aside by government health agencies. Doctors have nothing to offer their patients but a panoply of misdiagnoses or no diagnosis at all, and inadequate testing and treatment. Jobs, homes, marriages, friendships, the possibility of parenting, community activity, all fall by the wayside for the millions suffering from ME/CFS.

One researcher and author on this disease has pointed out:

“In the middle 1980s, families who had lost a relative to AIDS decided to create an AIDS memorial quilt. Everyone made a “block” and one day in 1987 they brought their quilt blocks to the mall in front of the U.S. capitol building in Washington. These panels covered a space larger than a football field. People stood together in huddles, weeping openly. Half a million people visited the Quilt that weekend. For AIDS patients, the quilt was a game changer.” -Hillary Johnson, author of Osler’s Web

We’re ready for a game-changer for ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A group of people with ME/CFS has come up with an engaging project design that could be as effective as the AIDS quilt, but we can’t do it on our own, sick as we are. We need healthy people who care, to make it happen. For more project details and volunteer opportunities, please contact


  1. Thanks Tarun but as I'm sure you noticed if you read it, it is not about AIDS information at all.

  2. Thank you for using your precious energy today to post such a well written and informative request! You write as if you had just read my journal about this debilitating disease.

    Yes, indeed, we are ready for a game changer for ME/CFS: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome!!

    Thank you again for helping to make others aware.