Sunday, October 10, 2010

Ten Rules for Advocates


Greg Crowhurst is increasingly distinguishing himself as one of the
World's best essayists.

When you read something as good as this you just think it should be so
obviously adhered to that it would be unnecessary to write it down.

More of the same please Greg.

Best wishes
ME Free For

From Greg's Blog, Stonebird, here.

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

"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

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

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