“Last week some of us at Barts-MS were accused, rightly or wrongly, of hyping the claim that anti-retroviral drugs may help people with MS. We actually said no such thing and it was not our intention to hype it; we simply discussing a BBC report that was trending at the time. However, we pulled the posts so as not to draw any further attention to this issue.”
“What led to this was a BBC report of an MSer responding to anti-retrovirals. This particular MSer has now made further disclosures and has apologised for the report as she does not want to raise false hopes (see below) and has personally emailed us to apologise.”
- The ‘dissident scientists’ who lends credibility to the theory.
- The ‘cultropreneurs’ who peddle quack therapies.
- The ‘living icons’ and ‘miraculous responders’ who have been treated.
- The ‘praise-singers’, ‘journalists’ and ‘politicians’ who promote the theory
…. Importantly, the medication certainly wasn’t a “miracle cure”. I still had MS, but I could consistently and repeatedly do things I can usually only do at my very best moment, on my very best day…..
….. Three days after I finished taking the medication, I had reverted to my ‘normal’. There was no long term effect sadly. Of course I would have loved to stay on the drugs, but drugs cannot be given ‘off-license’. They simply could not give very major long term HIV medication to someone with MS until it is proven to be safe to do so…..
….. We just don’t know yet. But what I wanted from my experience was a clinical trial to see if the medication could help others the way it helped me. And the trial has happened…..
CoI: multiple; our INSPIRE trial was generously funded by Merck the manufacturer of raltegravir