Petition: Remove CBT/GET from NICE guidelines NOW (ALL COUNTRIES can sign)

Sly Saint said:
6202.......

@JenB any chance you could retweet this petition......please.
Click to expand...
I have been in touch with Ben at ME Action they have this petition on their radar and obviously it is the ME Action U.K. people who take the lead on what U.K. stuff to promote when. Current focus is on EDM but hopefully the petition will get a nudge at some point. To be fair it would help if the petition had a timeline to help focus some attention on it but we don’t really know what the plans are for it. I think the small group involved are still focused on the music website.
 
MeSci said:
I don't think she looks typical of an ME sufferer.
Click to expand...
I doubt that there is a typical ME sufferer - but if there was, she would be female and middle-aged. And around 75% of people who are middle-aged have a BMI that is higher than the 'healthy range'. So I think this person looks as typical as any.

I expect that regardless of what photo those words 'Exercise would kill me' are put over, it would create a negative reaction in many people. The words come across as whiny, drama-queen-ish and lazy unless there is a whole lot more explanation.

I think ME is a very hard story to sell.
 
Rather than a photo of an individual, I think it might be better to have a montage of photos of people in bed, using wheelchairs etc. And the slogan 'Exercise would kill me', while it may be true, overdramatises the lived experience of most patients, I think. I prefer something like 'Exertion makes me sicker'.
 
NelliePledge said:
which is what?
Click to expand...
Well, she doesn't look anything like any photos I've previously seen (e.g. here), or anything like any of the few sufferers I've met, or me! I mean, she could be a sufferer, but not like many others. Or maybe we tend to only post positive-looking photos?

It's just that posting a photo that doesn't look like most of us may make it harder for people to believe that we are sufferers?

Hope I'm making sense.
 
MeSci said:
It's just that posting a photo that doesn't look like most of us may make it harder for people to believe that we are sufferers?
Click to expand...

We come in all ages, shapes and sizes. She does look ill to me, which is better than the commonly used young glamorous person looking a bit tired and sitting at a desk.

She is probably just as representative as any of us are. However, it's possible it would be better to use a younger looking person, to emphasise it's an illness that tends to strike us down when we are young or middle aged.

But even if we start young or middle aged, we get older! I wouldn't want to use a photo of myself now (aged 68) to publicise ME, because the viewer might just see 'old person' rather than 'sick person'.
 
I support this but it seems to me that if you have a petition it needs to have a focus and a timeline. The ME Association petition was effective because it got 13000 signatures in a short time period.

This has been creeping along for months and months so while we know getting 10000 worldwide signatures is pretty good for grassroots ME advocacy it likely isn’t going to have much of an impact with NICE.
 
You must log in or register to reply here.
Back
Top Bottom