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Anybody know if a CFS doc has begun an "unofficial" clinical trial?

Messages
74
This question just crossed my mind and I happen to be able to think clearly enough to write it down: :Retro smile:

The Science Paper is 9 months old. The WPI, from what I can tell, despite any negative replication studies, seems more and more convinced that this XMRV infection is *the* thing though not having said that publicly that I am aware of (Except CEO Annette Whittemore's Testimony to the Fall 2009 CFSAC?).

There must have been at least a few doctors involved in treating primarily patients with our illness that have contacted them, and I am sure some of them (at the very least would have gotten a rather detailed response) have gotten a continued response.

Some of these Doctor's must have initiated using antiretrovirals in the patients who are willing to give it a go and who can pay for the drugs (with or without insurance, I assume probably without).

So does anybody know if any of the "big-name" M.E. doctors have begun treating this way? It would seem that since it has been nine months the WPI has (I am speculating) accumulated at least some additional amount of unpublished data and they are as confident as ever.

Therefore I'd think some doctors would feel obligated to try patients on the anti-retrovirals that work best against XMRV according to the studies and according to the whatever the unpublished collaborations have shown.

Does anyone know a Doctor who has began treating their patients in this way?

I can certainly understand that such a doctor might want to be low-key about that until we get to the point of a publishable clinical trial being underway.
 

Doogle

Senior Member
Messages
200
If anyone does know doctors who are using aggressive antiretrovirals it might not be wise to discuss their names publicly on this forum until XMRV replication studies are published. It is known that sceptics troll these forums and Dr. MyHill has already fallen victim to individuals that believe medical pioneers threaten their power.