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."
Ghandi  

"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.

Comments

  1. JillOctober 10, 2010 at 8:37 AM

    Greg, Thank you. We keep playing around with the terms. Even these hybrid terms can mean different things and can be used differently. It only muddies the water. CFS is what allows Wessely to claim to be studying ME by connecting them. ME is not CFS. This is the message we need to get across.

    ReplyDelete
  2. AnonymousOctober 10, 2010 at 9:39 AM

    Very good Greg, thank-you. You have summarised the essentials. Well said.

    ReplyDelete
  3. JoanneOctober 10, 2010 at 2:52 PM

    Excellent post Greg.
    I haven't forgotten I need to write something for you just keep getting bogged down with other things.

    ReplyDelete
  4. WildaisyOctober 10, 2010 at 7:14 PM

    Thank you, Greg. I think you pointed out a big problem here. Those of us who, like me, have been sick for decades, have made so many compromises just to survive, we are in the habit of making compromises. In our search for wellness, we cannot afford to compromise, just as you have said.

    Patricia Carter
    www.mecfsforums.com

    ReplyDelete
  5. vwOctober 11, 2010 at 4:16 AM

    Very well said Greg! Am sharing this with others. Thank you x

    ReplyDelete
  6. Holy WayOctober 11, 2010 at 5:53 AM

    Dear Jill, Anonymous, Patricia, VW,

    Thank you so much ! I feel incredibly uplifted by all your kind comments. As Patricia says we just cannot afford to compromise. It's taken me 17 years of caring for Linda, to be able to learn that.

    ReplyDelete
  7. TheResistanceOctober 11, 2010 at 11:50 AM

    Nicely put...and hence why I am probably a doctors worst nightmare as I am quite happy to say "actually you are wrong". There is no room for compromise when it comes to our health - sadly if only the authorities felt the same.

    ReplyDelete
  8. TMHJROctober 14, 2010 at 1:55 PM

    Greg, we just had a two hour conversation about whether the CFSAC should refer to M.E. as ME/CFS, or CFS/ME, or keep "CFS". i do appreciate what Lenny Jason and Nancy Klimas have done for us over the past 25 years. i always tried to say M.E. and CFS as two separate but overlapping syndromes. but the damn CDC and NIH kept loosening the damn
    CFS criteria.

    ReplyDelete
  9. Holy WayOctober 14, 2010 at 3:25 PM

    ME is ME; it's not a syndrome called : CFS. For us it is very important to be clear it is a disease. Widening the goal posts is not acceptable; if you can widen the goal posts then you are not talking about ME, you are talking about a relative view that can be changed on a whim.

    The medical profession much as they have helped must also take responsibility for allowing the goal posts to be widened by notbeing assertive enough about the truth and the reality of ME and not being clear about the name. They accepted the name change - from a disease to a syndrome , letting the psych lobby walk right in and take over; today their power and the stranglehold they exert is
    awesome.

    The only way to take our power back is to use the proper name for the disease and not use labels that can be misinterpreted.

    ReplyDelete
  10. Lisa SimpsonOctober 15, 2010 at 8:27 AM

    Couldn't agree more. Fatigue is not the defining symptom of ME, neurological and muscular-skeletal symptoms are. ME is not CFS. End of.

    ReplyDelete
  11. AnonymousOctober 21, 2010 at 7:43 AM

    Thank you for this. It is hard when you are ill to stand up for what you know is right. I think knowing others are doing the same and that collectively we will make a difference will help us all to continue

    ReplyDelete

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