I'm genuinely curious why some people are responding that they would only do it if part of a clinical trial. Why is that? What purpose does that serve?
I said yes...of course with a doctor with a lot of experience w/ the drug following the protocol of the norwegian researchers (aka their new protocol).
I said yes...of course with a doctor with a lot of experience w/ the drug following the protocol of the norwegian researchers (aka their new protocol).
I would hope that whatever went wrong would be studied. If the same thing were to happen independent of a well designed study, I'm quite sure that my personal problems would be used to condemn the entire endeavor. That would simply compound the loss. ME is far too loosely defined to generalize from one person's lack of response to a treatment (or severe adverse reaction) onto the entire ME/CFS community. I would want there to be some sort of postmortem (literally or figuratively) in order to learn whether or not it is reasonable to generalize from my bad experience (I'm not naive enough to think that someone somewhere would not try to politicize any negative response to treatment - and many people have no clue about the real dangers of doing nothing!). Again, this may not change the negative impact the treatment had on me personally but the thought that something important could be learned about ME would shift my risk/benefit calculation further towards the benefit side.
