In the UK we face a further problem and a delay. The NHS and the NICE Guideline.
For people who have the money (or access to a system that provides drugs like Jimbob is using) the choice is there. Start treatment straight away or wait until clinical trials are done.
Even if XMRV is shown to be the cause of ME we still don't know (apart from invitro or patient experiments) how the treatment will work.
Then in the UK, even if clinical studies are done, we still don't know if the NHS will fund the drug. We may get fobbed off into waiting for NICE to recommend a treatment?
The NICE guideline for treatment of ME/CFS is up for review this Summer. Will they make us wait just how many years until they review it again? Will it take another attempt at legal action in the end to get treatment?
For those of us in the UK, we face the knowledge today, that even if clinical trials are held into drug treatments abroad, that is no guarantee that the NHS will provide them and NICE recommend them.
The questions should be
1. What treatments can we current afford
2. What can we get for free or under insurance/ state system
3. What level of proof will we individually wait for - or our system demand
My guess from the US is that if XMRV is confirmed and found to be a major cause and drugs are found that get rid of XMRV and then improve CFS patients health then the UK will be forced to provide treatment for CFS patients. One reason CBT et all have been allowed to take root in the UK is that there really haven't been many good solid treatment trials that provided substantial benefits to CFS patients. We're lucky with XM RV and that the world is interested in this and pharmaceutical companies are interested and they would be very willing to do rigorous treatment trials using their drugs. So we could get just what we haven't gotten this- a slew of really strong, expensive treatments trials that are basically bulletproof. Even the UK medical system cannot withstand that kind of evidence - not if they don't want to be perceived by the rest of the world as looney.
There are studies and then there are studies. There are alot of studies with holes in them that the powers that be will ignore. (I'm beginning to think that that may apply to the Lerner study unfortunately.) But really good strong studies they can't ignore and these companies have the money and expertise to create these kinds of studies - they do it all the time. If XMRV is there and they can treat it and that works I don't think there's any stopping it.