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

[leela]

mindy nailed it!

 

[Seven7]

I am proud! We sound so united and have the same message.

Is the press present?

 

[justinreilly]

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!!!

 

[leela]

mary dimmock is rocking it hard!

 

[justinreilly]

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.

Nice!

 

[justinreilly]

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.

 

[Nielk]

I hope everyone is paying attention to Eileen Holderman. She helped word the CFSAC recommendation that HHS claims this study is based on.

 

[leela]

eilleen calling out the BS in a big way! referring to threats etc

 

[justinreilly]

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.

 

[justinreilly]

Clayton says only staff, not committee members will talk to HHS from now on.

 

[justinreilly]

Anne Keith- do no harm; recommend to HHS they adopt CCC until an all-expert committee can update it.

Good message.

 

[leela]

i like where radio-voice guy is going: just bc you can't find it, doesn't mean we're crazy

 

[justinreilly]

Joe Landson- valid points, talking about book Brain on Fire, but not related enough to project, imo.

 

[jspotila]

@jspotila You rocked!

Sorry to hear about the dreadful cold. Hope you get better soon and can share your presentation with us on your website.

Thank you!!! I will be posting the text later today.

 

[justinreilly]

Susan Kreutzer- speaking on behalf of mecfsforums; 5,002 signatures against IoM contract! Maybe this was why mecfsforums was not invited to speak.

 

[justinreilly]

Susan- experts have already said CCC should be adopted; this contract is just a waste of money.

Good job!

 

[justinreilly]

Denise- PEM and cognitive impairment important; this afternoon is not enough time for you to spend with patients and experts

 

[leela]

jay spero on behalf of derek enlander. go dr E!

 

[leela]

darn it, the feed just died.

 

[Nielk]

darn it, the feed just died.

yes. mine too!