charles shepherd
Senior Member
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There is nothing odd about setting up trials. It is quite consistent with what I said - I think Charles Shepherd would agree. We are desperate for treatments for ME so there is no harm in doing proper trials of antivirals just to make sure we are not missing something.
Following on from the quite persuasive work that Montoya has presented (which he did at the 2015 CMRC conference in Newcastle) and published on the use of antiviral drugs in selected cases of ME/CFS the MEA takes the view that it would be useful to carry out further clinical trials to assess the possible use of valganciclovir in ME/CFS. Which is why we held a meeting (not successful) with Roche…..
In the meantime I would agree with Jonathan that there just isn't the robust evidence of efficacy to justify any sort of campaign to get the NHS or NICE to authorise the general use of antiviral drugs to treat ME/CFS here in the UK.
However, I think there are individual cases where antiviral treatment might be worth trying - provided this was under the supervision of an infectious diseases consultant, or other specialist who was used to using these type of drugs - and I know of a few cases here in the UK where this is happening/has happened.
I ought to declare a personal interest here in that my own illness was triggered by chickenpox infection and, along with neurologist Professor Peter Behan, I have a particular interest in people with ME/CFS where chickenpox has been a triggering or exacerbating factor. Anecdotal evidence suggests that these people seem to have a more severe and protracted illness.
When I was first ill, and spending quite a lot of time up in Glasgow with Prof Behan, we decided to try using a high dose of the antiviral drug acyclovir. Apart from developing some unpleasant side-effects it had no benefit whatsoever.