Suggesting an additional advocacy direction

[Barry]

[I realize that "Unrest" and other ME documentaries have tackled the subject, but I'm thinking of something more narrowly focused on the cutting-edge science and technology now being directed towards the problem (after decades of general disinterest).]

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

 

[Barry]

An example that comes to mind is engaging with MS. This is a tricky stand, because M Sharpe really shows he’s true nature in Twitter one liners, but I wonder if it’s worth engaging in it?

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.

 

[andypants]

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.

 

[NelliePledge]

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.

Interesting. So showing the impact of exercise tests as part of research by following patients and healthy controls might be something they could show??

 

[Simon M]

What the media might be much more inclined towards, is a really informative Horizon-style science documentary about some of the fascinating new biomedical science and discoveries that have been made recently, in the field of ME.

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

Thinking further, another possibility is looking at the way in which different specialities are beginning to work together to study ME: this collaboration is quite unusual.

I was thinking that @Simon M might be a good person to ask: his blog on current advances is so well-written, even I can understand it.

https://mecfsresearchreview.me/2018/09/27/a-brightening-future-the-state-of-me-cfs-research/

Absolutely, which is why I was thinking along the lines of several science stories potentially forming parts of a bigger picture. And yes, @Simon M has been in the back of my mind. Do you have any thoughts on this Simon?

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.

 

[Graham]

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.

 

[Snow Leopard]

I’m wondering if we might be missing a trick. I’m sure history will show us to be in a period of considerable and rapid change (even though it may not feel like it to us). Change means that advocacy opportunities can arise, but possibly easy to overlook when in the midst of such changes.

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.