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Live webcast IoM meeting Jan. 27th 1:pm starting

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leela

Senior Member
Messages
3,290
it's too bad there's not a chat function--they may not have a way of knowing the feed is dead
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Joan Grobstein on behalf of Leela was great! Thank you to both of you! Great message and good that it came from an MD!

Nice approach- just adopt CCC as the experts demand and then spend your time identifying the research gaps and produce a research plan.

I like this!!- it gives them something to do after adopting CCC! They might think just adopting the CCC and doing nothing else would not be ok.

"HHS asked the wrong questions, but you can give them the right answers!"

I love this!!
 
Sing

Sing

Senior Member
Messages
1,782
Location
New England
Thanks to all who travelled to this meeting and made our pitch, each with your own voice! Let it not be forgotten that the "patients" in the insane asylums known as Libya, Egypt and other abusively ruled states gathered forces and changed their regimes through social media and activism, and this will continue to be an extraordinarily powerful means for government change of the future. (I know it is not easy.) IOM has heard our message. Now what it will take is their courage and honesty. If they fail and produce solely a politically driven, compromised product, their work will be met with scrutiny, publicity and ever more action until we finally have a clinical definition and research program which suits our illness.

And speaking of "suits", I can't resist the metaphor of clothes. All the old, government-produced definitions are like ill-fitting, hand-me-down clothes, a grab bag at the church rummage sale for the indigent of our town. Yet all we are asking for are clothes which actually fit. The design has already been made, it just needs to go into full production mode.

Hey this is a funny idea for a future demonstration. We could wear very ill fitting clothing to "model" the un"suit"ability of our definitions.
 
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alex3619

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Unfortunately the IOM panel has limited options, being bound by contract. Some of the ideas presented are good, but they can't happen. What can happen though, if the panel experts get railroaded by the process, is they can resign or refuse to endorse the final report, at least I think they can .. having the contract out of the public view makes it difficult to determine what the situation really is.

If the contract is cancelled though the money will not go to CFS or ME research, it will be absorbed back into HHS funds I think.

Am I the only one who chuckled several times when we were repeatedly assured the IOM report will be very rigorously be reviewed? Oh, like the shoddy GWI report they released recently?
 
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