Kati
Patient in training
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Wouldn't that be great to vote for Dr DeFrietas to replace Reeves at the CDC'???
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Wouldn't that be great to vote for Dr DeFrietas to replace Reeves at the CDC'???
I agree with Finch. Eventually, Reeves (& his friend Peter White) will be proven wrong. It's a ? of how long it takes and how much energy it takes. The only reason I'm spending some of my precious energy on the CFSAC is I'd like to see things move as quickly as possible, and I'm hoping that a little extra shove from the CFSAC will make Reeves edge out the door (or fall off a cliff) a little faster. It seems worth a few minutes of my time. There are still 5 hours left to submit testimony to the CFSAC. There are 3 excellent statements on the M.A.D. forum in the Share Your Submissions forum, by Tomk, Caledonia and Sarahg. If you're looking for inspiration, it's all there. After reading them I've added a 4th issue to the much briefer, more pedestrian statement I'm going to send in. Since I can't edit my previous post, here it is:
4) The proposed CDC 5 year plan should be abandoned and replaced with real research looking into a biological cause using the Canadian definition. A good place to start would be to replicate the recent Whittemore Peterson Institute research.
For what it's worth.
Wouldn't that be great to vote for Dr DeFrietas to replace Reeves at the CDC'???
I used to be able to do that for a long time - probably longer than I can stand up now! It won't give them the total picture, but it's a start.
Five minutes can do me in some days.
Your point #5 is very important. I wish I'd seen it before I sent in my testimony. Unfortunately, after I posted the 4th point I sent in my testimony and then went back to bed. Oh well. Hopefully, many other people mentioned it. It looks like Whittemore-Peterson is moving as quickly as they can on a commercially-available test, but it's also possible CDC will try to derail this effort.Thank you for your permission to copy your ideas! It's so helpful to me. I came up with point #5, lifted from Dr. David Bell's Lyndonville Newsletter that came out today. Somehow, I don't think he'll mind!
5) Federal approval of diagnostic testing for XMRV needs to be put on a fast track. Now.
But I hope you are not saying that C.F.S. patients are not as ill as H.I.V. patients. My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.
I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V. But C.F.S., which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.
I don't believe for a second that Reeves is going to do anything other than attempt to discredit the WPI discovery. He is a heartless man with a political agenda.
Well, you said the results in our immune system are similar to AIDS. Researchers are saying this virus is similar to HIV.
In 1990, when American AIDS investigator Nancy Klimas declared that this disease was a form of acquired immunodeficiency, I thoughtSurely, now something will be done!...and that was twenty years ago.
In 1992, when Anthony Komaroff, Robert Gallo and others published their groundbreaking study of 258 patients from the outbreak in Incline Village, Nevada, and wrote in their summation, that the disease was a chronic, immunologically mediated inflammatory process of the central nervous system, and that the epidemiology suggests the possibility of an infectious agent transmissible by casual contact, I thoughtwell, surely, now! Seventeen years ago.