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My email to MIller of Action for ME

moosie

moosie

Messages
85
JohntheJack said:
Thank you so much for all your hard work on this. I appreciate it very much.

Very good letters - reasonable and polite. What possible reason would Alan Cook have for ending the discussion? Don't the trustees in effect work for the patients? Am I misunderstanding what a trustee is? And why is it in any way acceptable for the Medical Advisor of an ME charity to not even acknowledge a letter from an ME patient? Can you imagine a cancer patient sending a letter to the Medical Advisor of Macmillan and not getting a reply of any kind?

(By the way - why do AFME have so many members and followers on Facebook? I've never understood it. Though I kind of gather that all debate is silenced, on the Facebook page at least, so I suppose the majority of their supports don't know what they are really like.)

Maybe the new MEAction site (is that the right name? set up by the woman making the film?) will become the place for working on this kind of thing? I wish I could help fight this with you but even this email is almost beyond me. It's so hard when we are all so bloody ill. It has literally taken me hours to write this. It would be amazing if there could be a - can't find the word - team? - of the best writers, like you and the people who put so much effort into comment sections, who could work together to orchestrate (sp) a calm reasoned fight back. It might be the Labour leader debate but I have a sense that calm solid revolution is in the air. Enough is enough.

Thank you again and I hope this hasn't cost you too dearly health wise.

Moosie
sorry if this is a bit garbled I can't even read it back
Click to expand...
 
J

JohntheJack

Senior Member
Messages
198
Location
Swansea, UK
Moosie, thanks for making such an effort to reply. I have started some more correspondence with the charity, bt I'm not sure what will come of it. I'll report back.
I think Alan is a decent man trying his best, but defers too much to Miller. I have no evidence for that, and no doubt Miller himself is just trying to do the right thing. But I do think Miller is the real roadblock.
Hope you improve soon.
 
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