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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Celebrity utilization campaign

panckage

Senior Member
Messages
777
Location
Vancouver, BC
I have been thinking about using social media to get celebrities to spread awareness for cfs/me. More specifically I think celebrities known to have cfs/me will be what would be best to focus on.

I think this has his high reward potential in terms of visibility for our disease with a minimum of labor needed.

I've only contacted 1 celebrity and thought of 1 more that might be good also. But certainly we can find more!

UK
Stuart Murdoch from the band Belle & Sebastian - I sent him a tweet about #MillionsMissing. He didn't reply haha. He has thousands of followers so not surprised though! I think if a bunch of us send him the tweets he


Canada
Avril Lavigne - she didn't have cfs/me but had Lyme so maybe she feels a kinship for us?

Volunteers post below! :hug:
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I'm such a total wet blanket always but I would advise caution--most celebrities probably feel accosted much of the time just due to regular media exposure. I'm not sure that they feel a kinship either--if they did they already know how to use their celebrity toward that end.
I suspect there are other considerations that might hold them back as high profile people--possibly even still a sense of stigma.

Cancer doesn't seem to have this problem and when some celebrities have personal experience they don't wait to be asked I expect. Others I expect want to keep their private lives private.
I'm not saying you shouldn't pursue it necessarily but I'd go cautiously.
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
Thanks @helen1 that's very helpful. @Snowdrop there is no intention of accosting anyone. The purpose is just to make them aware of the campaigns and if they want to they can retweet to their thousands/tens of thousands of followers. If they have no interest I respect that. My intention is not to make them spokesman for this illness, or to even let the wider world know they have this illness. The purpose is to just increase visibility
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Someone earlier mentioned Amy Schumer might be into getting involved. I think it would appeal to her unique sense of activism-laden humor, this idea that people aren't trusted to describe what's happening in their own bodies: that we need the medical establishment to translate and reinterpret our experiences for us into a different and more societally- acceptable framework.

75% of us are women; we should aim to get some funny feminists on our side. ;)
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Well, I think (sadly) you can strike Samantha Bee off any list, certainly if you suffer from FM.

From her show last night, a moment when she was doing a gag about politicians running out of excuses to avoid the Republican Convention "leaving only the bizarre made-up bullshit":

Screen Shot 2016-07-19 at 13.34.13.png


I'm afraid this is probably the attitude among all the smart, progressive satirical voices. There's a real enthusiasm in those quarters for faddish psych bs (why the O'Sullivan book went down so well).