Ad campaigns - why hasn't there been one for ME?

Now I can find the CFS YouTube but not the depression one.

https://www.youtube.com/watch?v=bCUvygbYdXs

I think we can do better than that. Shows only a mild patient.

 

"Brain Storming", as in neuroinflammation.

Maybe not a good description, but sort of catchy for an ad.

Of course not enough proof yet re brain involvement, or is there?

What do others think? Are we getting much, much closer to conclusive proof? We need more specific, in-depth studies about neuro involvement, but could we say we have enough basic proof? Or, are we miles away yet?

An ad that points to neuro involvement, or any other abnormality for that matter would need sufficient proof behind it. I don't know if we have enough proof yet re the brain abnormalities, but I think brain abnormalities would catch people's attention.

 

Rather than lack of scientific knowledge being an embarrassment or weak society we could make it the focus, the scandal point ... Imagine being twenty five and being so poorly you have hardly left the house for five years with an illness that we have no treatment for because we have researched it so little, then refer scathingly to the the yuppie flu/is it real stuff, and then cut back to how research money could transform , longer term sufferers need mentioning because people won’t donate to an illness understood to be one that turns itself round after a few years of misery.

However saying that I just don’t think the public would donate to CFS Or ME/CFS, it’s too stigmatised. People think they know it and what they know is often based on a work colleague who had fatigue for two years and is now bouncing. So I think education should be the primary aim perhaps in the way HIV was education in the early stages. Interestingly hiv doesn’t seem to have done conventional public fundraising but still drew huge funds from various quarters (obviously it was killing hundreds initially). perhaps after education a little fundraiser could be added at the end. We can’t just do an advert like cancer or Alzheimer’s or homelessness where public sympathy is assured, just needing a prod.

 

I think the obvious need to focus on severe ME, as solve did, in anything graphic, is partly why UK charities haven’t done it as they have had this long standing compartmentalism , rather than seeing pwSME at the heart of the community and the highlighter of all that’s not being done, they’ve beem seem as a too depressing, difficult, non representative portion to be left to others, namely the 25% group. It’s not even chronic Severe ME that’s the big obvious area of need, to be a twenty five year, thirty odd, old, long term stuck on low moderate function for years which means leaving the house sometimes but essentially with less vitality and freedom than a healthy 85 year old, sucks.
CFS has just been synonymous with CF, and in people’s view it’s working or living high end with fatigue, or having short term extra debilitation and whilst that’s an important group in our community to care for, as in MS , people have to learn and are moved more by the more severe impact, which is going on in spades.

 

I don't think fundraising should be the main aim to start. I also think that there should be no mention of CFS; it wouldn't even have to mention ME.
Rather than trying to include everything/anything in a very short ad, a fairly short campaign that promoted something else (something bigger and more educating in terms of what has been going on for decades) would be more beneficial.
Subsequent donations would be a bonus.

eg: Unrest, or Voices from the shadows.
Pics of the severe (eg Lyn Gilderdale, Whitney Dafoe, Merryn Crofts)
Voice over
"If we become seriously ill we all expect to be treated with compassion and helped to regain our health"
"We don't expect to be disbelieved, blamed for being ill or dismissed by the medical profession"
"Isolated by a severe illness these patients lie hidden away. Fearful of retribution, their stories are untold or denied"
(taken from Vf the shadows)
"We are not asking for pity, or money, we just want people to know the truth".

 

Merged thread

Why don't we had ads on tv about ME. How much does it cost? Could we put together an advertisement ourselves? Explaining how severe ME can get, that we are needing research and ask for donations to specific research we would like funded.

This may have been brought up before.

I may not be able to reply any comment but interested to know why, is the cost too high to pay for. Does an advertisement have to be by a ME organisation? Is it to do with the legal side of things why we couldn't do it?

 

I ask myself the same thing. I even help however, raise money... we need plp that know about the field to take the lead on this one.

 

Maybe in a country where TV-ads are cheaper and almost nothing is known about ME/CFS, like France, Germany or Italy this could be a good idea.

I think however that it's a better (and cheaper) tactic to get the story of ME/CFS in the media by organising events like protest marches, running marathons, fundraisers etc. In Belgium, ME was recently on national television because someone was selling art-painted rocks for ME. It was a a program that came just after the news and was watched by almost a million people (which is a lot in Flanders).

 

The Solve ME/CFS Initiative did a billboard for a while. This might be an idea.

Events garner publicity, but not always.

@NelliePledge, I like your idea of ads on social media.

 

What about bookmarks with info on them? It's aimed at the grassroots - the public. Those who are able could leave them in coffee shops, libraries, and other public places. We could give them to friends and family. Leave them in doctors' office, ha!
Anywhere the public goes. I know some of these may get swept up with the garbage/recycling, but hopefully many would be read.