"Despite all warnings that the link between CFS and XMRV could not be confirmed, many patients suffering from this debilitating disease and desperately hoping for a cure started taking anti-retroviral drugs."
The small number of patients, who are being treated by a small number of doctors, are suddenly "many". Can we multiple our dismal research funds that way? How many patients can afford this treatment? How many have medical practitioners who are willing to prescribe the drugs at this point? Not many.
Hmmm. Do they know of something I don't know of? I have PM'ed, searched and went through ever corner of the www for such info, and I've come out with a handful. A
one digit number of patients.
I think the reason they are frightened that this tiny group does something new, is the same as I mentioned in the other thread: In the treatment of CFS, when a doc does a risk calculation, they compare the situation where everything is hunka-dory fine with this new and unknown path. And the answer of what they'll do gives itself.
If you're at the end of your rope, they give you no other option than tying the rope around your neck, and jumping from a chair. What I mean is that you're perfectly welcome to order an appointment at a euthanasia clinic. That's fine, go ahead. The medical team will assist you.
But the medical world wont allow you to take a long shot, and try a treatment, because they argue - well, eehhhh - it's a long shot (as if we don't know that). Nothing has pissed me off more in the course of my disease than that attitude. It's my body, but I have to leave it over to a doc who couldn't care less.
ARVs are just one thing. If I'd like to try other treatments, they are often denied by the doctor on the basis that there are no guarantee it'll work (who doesn't know that). And of course - everyone knows that it might even backfire. People are perfectly aware. But they never seem to care if a well informed suffering patient is more than willing to take a long shot to try to get out of this living **** (fill in blank). For some reason that doesn't matter.