Ten Rules for an ME Activist

Ten Rules for an ME Activist
Greg Crowhurst 9th October 2010
(permission to repost)

"I have repeatedly said we should never compromise with falsehood and wickedness."

"If you don't give up and you don't give in, you just might be okay."
Mike & the Mechanics

1. Do not  Compromise .  Do not accept any service based upon the CDC or NICE Criteria - they have nothing to do with Myalgic Encephalomyelitis.

2. Do not Compromise. Strive always to see beneath the rhetoric,   whether it be the glossy words of an ME Organization that has sold out to the psychiatric lobby or any  attempt to bamboozle patients into accepting a therapy-led  Fatigue rather than a biomedical  ME service.

3. Do not Compromise. Never be afraid to speak your truth , no matter how awkward that may be to others or how angry it might make people feel.

4. Do not Compromise  .  Never use any term to describe the  illness apart from the correct one, which is Myalgic Encephalomyelitis (ME). Abandon the  forward slash CFS (/CFS) ; if you have to refer to "CFS" then clearly state the truth :" ME , wrongly  called 'CFS'."

5. Do not Compromise . Never accept inferior , dismissive or inadequate treatment for  this World Health Organization classified  neurological disease.   Use the formal complaint structures and be prepared to go to the very top to obtain the biomedical recognition of ME  that people are entitled to.

6. Do not Compromise. Do not accept the psychiatric propaganda that ME is about inappropriate sickness beliefs. Be prepared to stand up to everyone on this : your family, friends, next door neighbours; they do not understand , they probably never will ever understand what the person with ME  suffers.

7. Do not Compromise . Never  accept slick arguments based  upon a relative truth.  This argument may sound plausible  relative to itself,  but it will not fit into the absolute truth of ME. Anyone can make a false argument based upon a false premise, for example that fatigue is the main symptom of ME.

8. Do not Compromise.  People's lives are at stake and people are neglected,people are  rubbished, people are dying of this disease; never forget that one individual standing up can make a huge difference in the world.

9. Do not Compromise. Never give up hope that change is coming, that there will be a biomedical breakthrough and that the more you speak up the sooner it will come.

10. Do not Compromise. Blaze a trail for truth. That way, ultimately, we win.

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