Monday, October 10, 2011

To most scientists it's all about a test, not a disease and most certainly not about patients

Jamie Deckoff-Jones MD said...:
 If XMRV wasted some money, what about the CAA? If these scientists were truly objective, they wouldn't all be so happy about the outcome. Mikovits, Ruscetti and Hanson, a very few others, are the only scientists in the world who know anything at all about the disease. And the fact that they care about us, doesn't make them wrong. The rest of the scientists in this story are completely ignorant of the pathophysiology.

Clueless, and not interested. Racaniello, ERV, commenter Jason, ("Jason' is a graduate student at Columbia, working in a lab next to Prof Racaniello, who has been posting comments recently".) et al have not an iota of understanding about why simple retroviral disease is such a good fit. To them, it's all about a test, not a disease.

Money, glory, fame. Most certainly not about patients.

They seem shocked to find out there are real people impacted. The idea that it is better for the patient community if research into gamma retroviruses stops now, so that all the money can be spent on investigating the same old downstream effects and known pathogens, is a cruel joke.

 From the limited anecdotal evidence we have, I'm pretty sure the response to antiretrovirals, even without specific drugs and without a PI, is better than placebo. Read more>>

 See also: Professor Wessely: A placebo is MORE effective than CBT
See also: Harvard Medical School: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients 
See also: The putative agent of ME/CFS can be transferred to monkeys 
See also: Almost 5% of ME/CFS patients contracted ME/CFS from a blood transfusion
See also: Cerebrospinal fluid profiles can differentiate between Lyme disease, ME/CFS and healthy controls
See also: The main characteristic of ME is an abnormally delayed muscle recovery after doing trivial things, if you don't have that, you don't have ME

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