Wednesday, October 13, 2010
The latest from Dr. Deckoff-Jones "It's an outrage"
"In our need to fight the prevailing medical impression that it is a somatoform disorder, the very real neuropsychiatric manifestations of the disease have been denied, even sometimes to ourselves."
"How pathetic that there's a chance to study something that could actually control the underlying cause of the disease and instead money is being spent to find out again what we already know. Results I can figure out from my email. While individuals undertake antiretroviral trials on their own. Begging to be lab mice. ...
It's an outrage."
* * *
I personally believe in the mind-body connection -- when I'm stressed, my symptoms are worse -- but Jamie is right, it's not something that gets talked about much in the patient community because as soon as you say words like "mind" or "stress" or "emotional", people like Reeves and Wessely will jump on it as proof that we're just emotional basket cases and feed us anti-depressants.
But it's something that needs open-minded investigation, by people who are willing to accept that ANY severe health condition comes with the risk of depression (but that doesn't mean cancer is "caused" by depression or can be cured with anti-depressants), and are able to consider that these neuropsych issues are a result, rather than a cause.
The whole history of CFS is one big outrage. Like the Tuskegee experiment victims, we need to demand reparations. Some of us could have kept working with proper treatment. The second wave of patients didn't have to get sick at all -- the government could have and should have been working on a treatment/cure with the same diligence that got a cure for SARS in 8 days. That proves that it's possible to figure out a virus very quickly, if you're willing to admit that it's a health threat.