Suggesting an additional advocacy direction

Precisely my original point, though I expressed it less clearly.

 

In truth I think that "engaging with MS" is a self-contradiction. He never "engages" except on his own terms, which is non-engagement. I have no time for him, and see no point pandering to his head-messing games.

 

In the doc following the rtx trial (III) on Norwegian TV2 this spring, they followed patients and researchers during the trial and up the unveiling of the results.

That patient stories are very moving, but what really takes you for an emotional roller coaster ride is the excitement and suspense of the unveiling process and the obvious disappointment of the research team when it turns out to be a null result study.

My point of course is that the documentary was very engaging even if they didn’t, in the end, really end up discovering anything other than that rtx doesn’t work for most PwME. Maybe even more so because there was a sense of suspense and discovery, not just a list of established facts.

 

In principle, this strikes me as a very good idea.

thank you, Graham and @Barry .

The current problem is that, while there are exciting findings, they haven’t been Published and/or replicated and/or are in small studies. I suspect that this rules out and Horizon-style program. I would feel uncomfortable with too much disappearing even in newspaper pieces. Things might look very different in a few years time.

However, if one of the most interesting findings were to be published (I think both the nano needle and the neuro inflammation studies have been submitted for publication), there would be and opportunity to do something, talking about the new published finding as well as the interesting stuff bubbling up below publication.

But my own health is shite so I’m afraid I can’t get involved.

Good luck.

 

Thanks @Simon M . I wasn't expecting you to get involved: it's much more important that you look after yourself! But thank you for your opinion – that is what mattered to me.

 

I've suggested something similar to DT, namely that the goal is to encourage scientists to join the field, so we need positive stories of scientists becoming involved.