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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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"They Should Know!" - the ME-CFS Community Story Contest

Phoenix Rising Team submitted a new blog post:

"They Should Know!" - the ME-CFS Community Story Contest

Posted by Cort Johnson

ME-CFS Community - my favorite new website - is sponsoring a contest that, I think, can make a difference. We patients don't have much influence on the research or even (unfortunately) on governmental policies. We're not simply strong enough as a community to strongly effect either of those things. But we're very strong as individuals because we all have one thing that can reach out and grab someone by their throat: our stories.

Our stories can make more of a difference than just about anything else. Politicians and bureacrats do not respond to statistics - they're immersed in them all the time - but a good story- that really resonates. Good stories knaw away at people. They upset the status quo. They disturb their comfort level. They make the issue personal.

No one should go into the darkness with their story left unsaid. This disease does too much for people to just go silently into the night. If anything else - people should tell - because people should know. Not enough of them know now.

It's possible that these stories won't really be heard. But if we don't tell them they will never be heard. If we do tell them at least we will know that there were told - that they've been put down. Yes, there are some nice cash prizes but I don't think this 'contest' is a trivial exercise at all. I think it's a shout of defiance against this disease and god knows what kinds of seeds these stories could plant if we get lucky.

Go here to find out more about the contest. If you haven't checked out the community - check it out; it's definitely a different kind of place.
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