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Tag Archives: ME/CFS
WANTED: A dynamic …
WANTED: A dynamic, high-profile celebrity To do for ME/CFS what Elizabeth Taylor did for AIDS, what Jerry Lewis did for muscular dystrophy, and what Michael J. … Continue reading
Posted in Advocacy, Celebrities with ME/CFS, Raising Awareness
Tagged AIDS, Elizabeth Taylor, Jerry Lewis, ME/CFS, Michael J. Fox, Parkinson's, Philanthropy
4 Comments
How to Regain Control of Your LIfe
This post is for Evelyn Metts (and others) who wrote me about her 26-year-old son who has just been diagnosed with ME (or CFS). She asked how people could regain control of their lives considering there is no cure for … Continue reading
What’s it like to live with ME/CFS?
Has anyone ever asked you what it’s like to live with ME/CFS? Most people think you’re just ‘tired’ or ‘anxious’. Just like the HR person in charge of disability claims at my workplace said to me, “I don’t want you … Continue reading
Posted in Personal, Raising Awareness, Respect, What is ME/CFS
Tagged Chronic Fatigue Syndrome, ME/CFS, Queen
2 Comments
Don’t Forget to Sign the Petition
Kati says it’s almost time to deliver the petition to the Canadian Minister of Health, so if you haven’t signed it yet please click here . Also, don’t forget to share this petition with family and friends on Facebook and … Continue reading
AIDS and ME/CFS: stories with two different outcomes
I recently read a very interesting and comprehensive article about why the stories of AIDS and ME/CFS have different outcomes. Articles like this are usually written by someone in the ME/CFS community, someone who is directly or indirectly affected by … Continue reading
Posted in AIDS vs ME/CFS
Tagged AIDS, CDC, Columbia University, HIV, Los Angeles, ME/CFS, Vincent Racaniello, virology blog
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Beautiful Article by Columnist Llewellyn King
Nationally syndicated columnist and author Llewellyn King has been writing for newspapers for over 50 years. King is executive producer and host of “White House Chronicle” on PBS. Lately, King has been writing about the plight of ME/CFS sufferers. He says in 2010 he … Continue reading
Posted in ME/CFS in the Media, Raising Awareness
Tagged Llewellyn King, ME/CFS, PBS, White House Chronicle
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A New Name for “Chronic Fatigue Syndrome”
What’s in a Name? The name “chronic fatigue syndrome” is misleading and trivializes the serious and complex nature of the disorder. Patients have been calling for a change of the name since it was first adopted in 1988. It is … Continue reading
Posted in Authors with ME/CFS, ME/CFS in the Media
Tagged Boston Globe, Deborah Kotz, Laura Bertand, Laura Hillenbrand, ME/CFS, Seabiscuit, Unbroken
2 Comments
President Obama promises to look into ME/CFS research at the NIH
At the Reno, Nevada Town Hall meeting on April 21 Courtney Miller, whose husband Robert has ME/CFS, asks President Obama if there’s a way for the NIH to have more research money directed towards ME/CFS. President Obama promises to have … Continue reading
Have You Taken the ME/CFS Family Survey?
Dr. Jamie Deckoff-Jones and Dr. Michael Snyderman are trying to find out what percentage of ME/CFS patients have family members, by marriage or blood, with ME/CFS or other neuroimmune diseases. Dr. Deckoff-Jones has recently accepted the position of Director of … Continue reading
Raising Awareness for ME/CFS 