In 1999, Michael Reeves, who was then the current director of the CDC, found that the researcher in charge of CFIDs research was stealing the money allocated for CFIDS research and was applying it to other CDC projects. In my opinion, the CDC’s actions have shown that they do not care about those of us suffering with this debilitating disease.
The CDC has continued to underestimate how common CFIDS is and choose to ignore how many people are truly sick.
Fibromyalgia is estimated to affect approximately 6 million people. In the study done by Dr. Teitelbaum, 69 out of 72 patients with Fibromyalgia (95%) had CFIDS. In another study by Dr. Dedra Buchwald, 64% of her Fibromyalgia patients had CFIDS. This would lead you to expect at least 4 – 5 million cases of CFIDS. Then there are about 10 – 20% of CFIDS patients who do not have Fibromyalgia. According to these studies, there should be about 6 million cases of CFIDS.
But the CDC wants to believe that there are only a few hundred thousand cases. The CDC requires that physicians rule out other possible causes of fatigue and adds other criteria that systematically whittle down the number. This is in the small print, according to Dr. Jason of DePaul University, who is the world’s foremost epidemiologist for CFIDS. But the big print strongly discourages doctors from looking for the other problems to weed out!
FYI – William Reeves blew the whistle on the misallocation of CDC funds. As a result of the Congressional investigation, the money was restored over the course of several years. The CDC awareness campaign (an additional 4.5 million) happened in part because of the controversy over the funding issue. Also, the CDC is using the number 1 million patients, and a study is in the process of publication that may change that number.
I don’t disagree that there are problems at CDC. But at least they are saying a million patients, and funding the awareness campaign. It’s a first step.