Since this is a forum dedicated to digesting the XMRV news, I want to put in a plug for making our voices heard, as well as listening to our own voices. There is a place for both, and both are therapeutic and practical. So, on that note, just a reminder that there is less than 24 hours to submit written testimony to the Chronic Fatigue Syndrome Advisory Committee, which meets October 29 & 30.
Hopefully, in six months or a year we will have a new name, XAND or something else, a new definition and some progress toward a cure. Hopefully, we'll all be feeling better. But, just to help prevent the CDC from delaying progress, I hope that anyone who hasn't already sent in written testimony will copy & paste the statement below (or make their own statement) and send it to:
before 5 pm tomorrow. (They originally said October 15, but they have changed it to October 14.) CFSAC isn't making it obvious how to submit written testimony on their website, but it looks like this is where to send it. Probably it would be best to put "Written Testimony CFSAC meeting October 29-30" in the subject line. Please alter the statement below in any way you want, add anything to it that you want, or rewrite it completely & post it if you have a better idea or a better wording. If you hate the name ME/CFS, put in the name you like. Testimony doesn't have to be 5 pages and it doesn't have to be polished. I've only written down these 3 statements because they're what seems to be most important to the people who have given an opinion on the M.A.D. forum, and, hopefully, it will make it easy for people who don't feel well enough to compose something themselves. If you're interested in more discussion of plans for the CFSAC meeting check out the M.A.D. forum. We all know the CFSAC is fairly toothless, but they're all we've got (so far). The one tooth they have is they can make recommendations to the Secretary of HHS. Please send something!
To the CFSAC:
Thank you for your service to the ME/CFS community.
I urge you to make these 3 recommendations to Secretary Sebelius:
1) No government funding should be made available for research using the Reeves (2005) empirical definition of Chronic Fatigue Syndrome. This definition has been shown to include many people who do not have the illness that has traditionally been called Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. Any research done on the larger group defined by the Reeves definition will merely be confusing and will be a waste of taxpayer money.
2) The current leadership at the Centers for Disease Control that is responsible for research into the causes and potential therapies for Chronic Fatigue Syndrome has wasted the limited funds available for CFS in a misguided attempt to redefine it. Meanwhile, there have been no advances made by the CDC in our understanding of the disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The leadership should be replaced.
3) If there is going to be any progress toward a cure for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome more funding is needed. Given the new information about XMRV as a possible causative agent, it is urgent that adequate funds be allocated.
Again, send to: CFSAC@hhs.gov
Subject line: Written Testimony CFSAC meeting October 29-30