Time for Unrest--advocacy challenge, one patient's response

Sushi

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Through sustained calls-to-action worldwide, #TimeforUnrest aims to:

  • Gain mass and strategic recognition of ME as a debilitating illness suffered by millions;
  • Mobilize a community of ME patients and allies to advocate on behalf of those with ME and other complex illnesses;
  • Promote knowledgeable and empathetic care for ME within the medical community;
Here is Laura Vitale's response:
Laura Vitale
Published on Oct 31, 2017

ME (myalgic encephalomyelitis) was named and described accurately in 1956, long before CFS (chronic fatigue syndrome) came on the scene in 1988, invented by the US CDC with a strong psychiatric bias. ME is a distinct neurological disease (US and WHO ICD G93.3) that should never have been considered to be a part of CFS....
 
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ME code does not exist in the US code so all plp
Would be without diagnosis.
If you wnat that to change. First advocacy for the ME code to be included in the uS code and at same time remove the Cfs code. But cannot remove until you add the ME one!!!
 

CFSTheBear

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The "ME is not CFS" thing clouds the narrative, in my opinion.

CFS is a terrible name and one that doesn't accurately portray our symptoms. But it's unbelievably confusing to an outsider to say "I do not have CFS I have ME" when they are known as the same thing. In my country, virtually everyone is diagnosed as having "CFS".

It's a terrible name, but I feel like more advocacy effort should be spent elsewhere. I personally couldn't care if it was called Stay In Bed All Day Because Holy Shit I Feel Ill Illness, if advocacy gained enough ground to find a cure.
 
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I found the music and the volume of information meant information overload couldn't take it in. Is the audience me community or general public cos I think this would lose the public even quicker than it lost me.

i understand the point about the name I use ME as much as possible but most people have never heard of it