help wanted re Early history of CFIDS and ME activism

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Early history of CFIDS and ME activism

Mary Schweitzer's <marymsch@comcast.net> request for info via Co-Cure was posted Dec 14 09

I don't know Mary Schweitzer, but I liked this bit in particular:

I am a bit concerned about the current state of the discourse - this is no time for us to have a meltdown. So please, try to refrain from "He said this and she said that." I want to see what groups formed together and tried to change things - when and where.

In my own experience, given that we don't know about The Disease until we are very sick, and our caretakers are often too overloaded to be activists, really good groups have burned hot and flamed out. They may not have lasted, but the sum total of their efforts has brought us whatever visibility we do have.

Kim Kenney McCleary's memoirs of the early days of CFIDS advocacy through her eyes has prompted me to ask a question.

I came into CFIDS advocacy (as it was called then) in 1995. Everything about the earlier years I've either learned from Hillary Johnson's tome "Osler's Web" or my friends' recollections, such as those of Meghan Shannon.

I am working on a piece for publication, and I would be grateful for stories from the early days of CFIDS and ME activism - before 1996.

If you reply to this post it will go to my private email. Let me know if you would be willing for your name to be used, or otherwise how you would like me to cite the reference. You can always use a pseudonym (fake name) as long as you give me the real one so I can verify the story.

Also, let me know if you would be willing to let me put your story (or a summary) on a website, and whether you want me to use your real name, a pseudonym, or perhaps initials.

I am not interested in personal recriminations, but in the stories of groups such as CACTUS that were important before we even had the name "CFS".

I know next to nothing about the history of ME activism, except for what I can glean from the magnificent essays by Hooper, Williams, and Marshall [enough that they probably could be a book of essays by now, hint hint].

So if anyone wants to fill me in on the international history of ME activism I would be grateful for that as well.

I am a bit concerned about the current state of the discourse - this is no time for us to have a meltdown. So please, try to refrain from "He said this and she said that." I want to see what groups formed together and tried to change things - when and where.

In my own experience, given that we don't know about The Disease until we are very sick, and our caretakers are often too overloaded to be activists, really good groups have burned hot and flamed out. They may not have lasted, but the sum total of their efforts has brought us whatever visibility we do have.

For example, we would not have the CFSAC today, had it not been for the activities of groups such as CACTUS and names such as Dr. Phil Lee that should be known to us all as an early hero.

[It goes without saying that whatever is in Osler's Web gets cited as being in Osler's Web - but even that immense body of work could not cover all the ground.]

Thanks! I think it's time for us to reclaim our history in a sober and professional manner, just as our story may be about to take a dramatic and positive turn.

Mary M. Schweitzer, Ph.D
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