Monday, March 31, 2008

The State of CFS Research Today

When SARS came along, CDC jumped right on it.  Other new diseases surface, CDC jumps on them. 

As a doctor told me about a local medical group, they're only interested in what will get them worldwide headlines, and CFS is "old news" that's not worth their time.

A few years ago, there was some groundbreaking research proving that CFS is biological in nature.  Our leading news station ran a brief story about it during the noon news, but not a word during the evening/late night news when our employed friends and relatives would hear that it's not just all in our heads.

Similarly, the first reports from Dr. Kerr about abnormalities in the blood rated a few words in the crawl on CNN, but I could not find a word about it on their website and no other media said anything. 

Ditto, Dr. Montoya's excellent results with anti-virals.  Not one word in the mainstream media.  You have to hang out at Co-Cure, ImmuneSupport or other CFS-specific places to find out about it.

Then CDC holds a press conference at which Dr. Klimas says it's real, it's disabling, it's physical in origin, and most of the media ignore her comments to focus on Reeves' subsequent description of us as emotional basketcases who can't handle a little stress.

And then we wonder why people still have the idea that CFS is just depression?

I'm going to say it here, because I'm not afraid of retaliation: it makes you wonder whether CDC has warned the mainstream media that publicizing anything that contradicts Reeves' stance will get them uninvited from future CDC press conferences.

God bless our dedicated CFS researchers, going it against the odds and without proper funding.  As Pat Fero observed, since it's not a prestigious subject with big-bucks research grants, our researchers are as shabby-looking as the patients, with holes in their shoes.  But they keep at it, because they -- unlike CDC -- have forged a personal connection with the patients and are willing to forego the big bucks and prestige in order to get their patients well.


Tags: ,

No comments: