Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 27, 2014.
mindy nailed it!
I am proud! We sound so united and have the same message.
Is the press present?
Jeannette: "like Mindy says it's 'insanity'"; IoM not qualified; Fukuda was a disaster, destroyed so many lives; you can not produce a meaningful definition. Your definition will be destroyed. Patients will fight you to the end with lawsuits and public opinion.
Haha. I love it!!!
mary dimmock is rocking it hard!
Mary Dimmock speaking personally about how her child's health was destroyed by climbing Mt. Washington because exercise was emphasized to him as critical after his ME/CFS diagnosis. emphasizes PEM. heterogeneity is man-made in CFS. applause. 'spectrum' idea isn't valid. You need a ouiji board to make sense out of all the studies based on all the different definitions.
Eileen calling for cancellation of contract, citing all the evidence of opposition- fifty expert letter, letters to congress, calls from congress, tweets, 171 advocates, etc.
I hope everyone is paying attention to Eileen Holderman. She helped word the CFSAC recommendation that HHS claims this study is based on.
eilleen calling out the BS in a big way! referring to threats etc
Eileen: This IoM process is fatally flawed. You are good experts, but HHS has rigged the game like they always do. CFSAC recommended a workshop to adopt CCC; it is outrageous what HHS has done with this- Eileen and others who object to govt definition plans threatened by govt; IoM has already written studies on ME that are very incorrect; we have a good definition CCC, these three processes are a waste, cancel them; start studying the disease, it's been 30 years.
Clayton says only staff, not committee members will talk to HHS from now on.
Anne Keith- do no harm; recommend to HHS they adopt CCC until an all-expert committee can update it.
i like where radio-voice guy is going: just bc you can't find it, doesn't mean we're crazy
Joe Landson- valid points, talking about book Brain on Fire, but not related enough to project, imo.
Thank you!!! I will be posting the text later today.
Susan Kreutzer- speaking on behalf of mecfsforums; 5,002 signatures against IoM contract! Maybe this was why mecfsforums was not invited to speak.
Susan- experts have already said CCC should be adopted; this contract is just a waste of money.
Denise- PEM and cognitive impairment important; this afternoon is not enough time for you to spend with patients and experts
jay spero on behalf of derek enlander. go dr E!
darn it, the feed just died.
yes. mine too!
You can also try a Google Site Search
Separate names with a comma.