• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Form a group like ACT-UP?

I'm new to this forum, so I may be out of place. Apologies if I am.

I myself feel very energized by the discovery of XMRV and I've noticed many others are too. Until now I've been feeling so discouraged that I didn't even follow a lot of news or discussions on CFS and FM because it made me feel even more discouraged to delve into the reality of this illness.

But now that we're riding this wave, I think it's the right time to form a vociferous patient-centered advocacy group, not just for more research but for the very important public recognition of this disease, so we don't have to feel embarrassed to tell people we have CFS. (On another website, several people mentioned they'd rather say they have FM than CFS because it sounds a bit more like a real disease. I'm ashamed to say I feel the same way!)

I know there are some really good groups out there already, but I think we need something like what ACT-UP did for AIDS/HIV advocacy, to be in-your-face and demanding of respect, with loud campaigns and creative demonstrations that demand public attention and recognition.

Ironically, I don't know how much energy I could devote to this because I'm so tired, and I know many of you are in that exact same boat. But we also have a lot of healthy family members and friends who can help.