I am not sure if naive is the right for believing in the possibility for a paradigm shift. Believing it may happen just like that, without any activism, yes. But believing it could happen, no. Just take a look at what the Norwegian health officials have done. They have apologized. That sounds like the first step towards a paradigm shift to me (and the apology didn't come free, there's almost always activism involved).
The most important reason for kick starting studies, for the patients, is the possibility to take part themselves. The situation really reminds of me this cartoon I've seen:
It's years and years until something happens if sitting on the sideline. I guess many patients would have no problem accepting a huge death risk to be given a shot at life. Not because they're unable to do a risk/benefit assertion. But because the situation is so unlivable that they'd rather jump out into the great unknown, than spend more years with ME. But -- there is no huge death risk. The drug is
safe enough for RA patients. And it's been used on hundreds of MS patients.
The only way I could see it backfire, would be if someone got some funds together, got a doctor halfway interested, and decided to do a
blinded trial. If that's done halfhearted, it could do much harm. Open studies, showing the drug
could work, in a patient group from another country/continent, with other researchers would help. More MDs would get interested, the buzz would get bigger, and some patients would (hopefully) benefit from being allowed part a trial.
"I suspect the consensus within the severely affected portion of the patient community would be that the risk of viral reactivation is outweighed by the potential of complete remission" You're right.
And, we don't need a consensus. Some might feel it's the right thing for them, others not. It's all optional. The life situations are really different for different people. With RA, the drug is reserved for those with moderate to severe RA, so not all groups are included. And they must have tried other therapies first.
Has anyone wondered why the Norwegians were able to take the opportunity offered by a small study and extend it into a larger initiative to look at the biological basis of ME and our governments will not?
How they got the national initiative to make a larger trial years and years from now? As I've understood it, to has to do with years old campaign promises by politicians to take ME seriously.