If not even Lady Gaga could do it, how the hell can we call attention?

Folk

Well-Known Member
I always though we just need a HUGE celeb to openly say and show how debilitating ME or FMS can be.

Lady Gaga did that and nothing changed.

I mean I have a youtube with 700k Subs and it's my main job, I always though, reaching a certain number of subscribers (like a million) I could make a big difference. Or now since I studied a lot, I kinda know how to viralize a video if I really wanted to... But if not even the reach of Lady Gaga did, what would do?
 

JES

Member
Sometimes I wonder about this. We have all these Me Too, LGBT and other movements, but little disease activism. Of course there was the big AIDS activism back in the days and few years ago there was the ice bucket challenge for ALS. But for more common diseases like FM or ME/CFS, not much. I guess one reason is these are often invisible illnesses. When people see someone drop dead from AIDS or ALS, it's a little more impactful.
 

Not dead yet!

Well-Known Member
I certainly don't know either. But I suspect we need a Foundation. like Open Medicine Foundation. Maybe there could be a PR portion of it that could lead the way, getting in touch with Lady Gaga, Cher and others, and planning events once a year. There's also ME Action.

Did Lady Gaga actually say she has ME/CFS? I thought she said Fibro. One problem is that we've diced this problem into tiny pieces and it's better looked at as a general "energy problems" issue. People can easily dismiss ME/CFS if they can think, "But she said Fibro, that's not the same." Especially people who don't know. Before I came to this site, I didn't know that my Fibro diagnosis could be related to my energy problems.

As for impactful, we have people in our community who've gone to Switzerland to commit medical suicide. That's drama enough, I think.
 
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Folk

Well-Known Member
I certainly don't know either. But I suspect we need a Foundation. like Open Medicine Foundation. Maybe there could be a PR portion of it that could lead the way, getting in touch with Lady Gaga, Cher and others, and planning events once a year. There's also ME Action.

Did Lady Gaga actually say she has ME/CFS? I thought she said Fibro. One problem is that we've diced this problem into tiny pieces and it's better looked at as a general "energy problems" issue. People can easily dismiss ME/CFS if they can think, "But she said Fibro, that's not the same." Especially people who don't know. Before I came to this site, I didn't know that my Fibro diagnosis could be related to my energy problems.

As for impactful, we have people in our community who've gone to Switzerland to commit medical suicide. That's drama enough, I think.
She said only Fibro
But you see I have both Fibro and ME/CFS dgx... And I'm not sure whether I have both, one of them or none.

The more I look into SIBO and gut issues, the more I think it can cause the same symptoms as Fibro or ME.

So it's the same old problem of which doctor did you go first? I was also dgx with Lyme I just never bothered....

The point is raise awarness to any of them, Fibro or CFS... I think in the long run, one would benefit from the other.
 

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