MS society question people on the streets to ask what they know about MS

I thought that this was interesting and would be interesting to do with ME so we target our education efforts better. I was wondering whether it Can be incorporated into #MISSINGMILLIONS when our people are on the streets , perhaps giving out an information leaflet alongside?

Tbh I suspect few will have heard of ME and then assume CFS is tiredness but it could be worth asking a few questions like age of sufferers, duration and severity assumed etc

 

I think it’s a great idea. A video like this might also be a powerful tool for demonstrating the lack of understanding, negative attitudes and stigma associated with ME (assuming these things were captured on camera of course... but that seems likely given how widespread they are).

 

Distributing pamphlets by my local support group was key during the early 90's to get the message out. The pamphlets were also distributed to doctor's offices and clinics. This was how I was able to find an ME specialist early on to get a diagnosis and disability.

 

Are we allowed to distribute to peoples homes like advertising flyers do?
Some might regard it as bumf, some might read. I still think with the stigma and complex narrative of ME (wide variance in symptoms, severity and outcome) it will be hard to fundraise from the public even if they do understand it more

 

There are mailing agencies that will do this for you. Going door to door in one or more postcode areas to deliver leaflets.

 

The population didn't really get the message but physicians did, and that's 99% of the goal.

In our case it's almost reversed. I often see comment threads in the wild talking about ME and generally getting support and understanding, usually from people who know someone affected. It's the exact opposite with medical professionals, the more they dominate the discussion the nastier it gets. Ironically, it's the same with "professional skeptics", who are some of the biggest jerks while they unwittingly defend pseudoscience.

Awareness mostly matters in how it reaches and changes physicians' perception. The hostility of medical institutions is by far our biggest obstacle.

 

I agree it’s the medical profession, colleges, universities, NHS, NICE MRC that are our problem. Having those lay people around us more kind and helpful would be very nice but Ultimately it won’t change things, especially as I think we still would not get in money like other illness. That’s why I’m not especially enthused by just “awareness raising” versus lobbying.

 

Hi @Cinders66 - I just wanted to let you know that the hashtag is #MillionsMissing not #MissingMillions.

Sorry I don't have any input on the main topic of your post.

 

thanks