Wednesday, 4 November 2015

NewsSpeak: anti-science movements

Setting the record straight on false hopes. #MSBlog #NewsSpeak 

"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."

"Like most modern unproven treatments that get adopted prematurely in MS they tend to be driven by social media and can be classed in the anti-science league, i.e. adopted against the predominant scientific opinion of the time, for which 4 main social drivers have been identified in sociological studies: 
  1. The ‘dissident scientists’ who lends credibility to the theory. 
  2. The ‘cultropreneurs’ who peddle quack therapies.
  3. The ‘living icons’ and ‘miraculous responders’ who have been treated. 
  4. The ‘praise-singers’, ‘journalists’ and ‘politicians’ who promote the theory
When it comes to the hypothesis that anti-retroviral therapies may be of benefit in the treatment of MS we don't think any of these criteria are fulfilled. The post on the MS Society's website goes a long way to addressing the third criterion above; the MSer concerned has categorically stated that her response was temporary and she now back to her pre-existing level of functioning since stopping the treatment. We as a group are exploring this issue in a hypothesis driven manner and will report the results of our first trial, the INSPIRE trial, as soon as we have had our extended investigators' meeting."  



ShanaPezaro. Headlines and HIV drugs. Posted on MS Society Website 29 Oct 2015 

Excerpts:

.... 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..... 

..... I'd been exposed to high risk of contracting HIV and therefore was given 28 days of the HIV medication as a preventative measure. Who knows whether on day 30 the medication would have stopped having any impact at all on my MS. We have to wait for the longer trial results.....

..... 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.....

CoImultiple; our INSPIRE trial was generously funded by Merck the manufacturer of raltegravir