Next CFSAC meeting June 16-17, 2014

[Nielk]

But even so, there used to be loads of people in the audience. I wonder why this meeting is different.

Some people are too sick. Others are sick of these shenanigans. Some might be staying away as a protest.

 

[Hope123]

Do they really think that we are so dense? If Wanda says everything is alright, we will believe it?

Perhaps not you personally but society is generally 80% "sheeple" (contraction of sheep and people) and so it's not surprising if the similar statistic applies to ME/CFS patients in general. (I would be glad to be proved wrong.) And politicians well know that if you repeat something enough, even if it's false, people will start to believe it's true. Cognitive psychology/ biases are fascinating.

 

[Nielk]

Montoya: We need funding for multi disciplinary research groups.

 

[Sasha]

Some people are too sick. Others are sick of these shenanigans. Some might be staying away as a protest.

I understand that many people are far too sick to attend the meeting but that would also have applied to previous meetings.

Yes, maybe it's a protest, or I wonder if there were similar issues around short notice and booking flights that Jeanette mentioned.

Whatever the reason, the difference is very striking.

 

[Nielk]

Kraftchick - We first need a common base of patients (i.e. diagnostic criteria) before doing research.

 

[Nielk]

Why does Kaplan keep talking about this spectrum of diseases including chronic pain, neuro-psychiatric and depression?

 

[Nielk]

Alaine to the rescue! Thank you. We are a distinct disease. Do not lump us with depression spectrum. Clearly, Kaplan does not know the disease he is supposed to be representing.

 

[NK17]

Kraftchick - We first need a common base of patients (i.e. diagnostic criteria) before doing research.

Which is exactly what Dr. Nancy Klimas has recently said, that all these governmental "activation" is a bit premature, since there are serious studies (mainly abroad NO, AUS, UK) currently or about to start, that will give US some important answers that this CFSAC and their partners in crime (HHS, P2P, CDC, IOM etc.) won't have available when they'll take their decisions.

This is the same old story, or to put it as Mark Twain and before him Benjamin Disraeli: " Lies, damned lies and statistics. "

 

[GalaxiiGrl]

We, the patients, are a sinking ship, and the government is having a meeting to discuss the possibility that they might start to think about making a plan for the best way to rearrange our deck chairs.

 

[Nielk]

I don't know about you, but this is so painful to watch. I want to tear my hairs out.

 

[Nielk]

This is cdar that they are talking about: http://ndar.nih.gov/

 

[Scarecrow]

How can you be so ill-prepared to chair a meeting? This is just disrespectful! And I don't just mean to patients. What an inefficient waste of time.

 

[Nielk]

Our taxmoney working for us at it's best.

 

[NK17]

Couldn't help it and I started to watch …
It's rather painful at times…
I love Dr. Montoya and Dr. MaryAnn Fletcher interventions.
The Phonies2Phonies has to go , we can't take leap of faith with a bunch of people who know nothing about ME or worse mainly know the propaganda!

 

[Nielk]

Jeanette Burmeister's testimony. - http://thoughtsaboutme.com/2014/06/16/my-june-2014-cfsac-testimony/

 

[Denise]

Why does Kaplan keep talking about this spectrum of diseases including chronic pain, neuro-psychiatric and depression?

I think part of the reason Kaplan KEEPS talking about spectrum can be found on his website.
http://www.kaplanclinic.com/
The second tab may provide additional insight.

 

[Denise]

I understand that many people are far too sick to attend the meeting but that would also have applied to previous meetings.

Yes, maybe it's a protest, or I wonder if there were similar issues around short notice and booking flights that Jeanette mentioned.

Whatever the reason, the difference is very striking.

I think it is good that the difference in attendance was striking.
It would be interesting to know what past viewing (of livestream) #s have been and what the #s are for today and tomorrow.

 

[Nielk]

Day 2 of CFSAC meeting starting in five minutes. You can watch it here - http://www.hhs.gov/live

Today's agenda

9:00 a.m.

Call to Order
Roll Call (c-list below)

Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer


9:15 a.m.

Logistics



Nancy C. Lee, M.D.
Acting Chair
Designated Federal Officer (DFO)


9:30 a.m.

Agency Updates


CMS/FDA/HRSA/SSA

10:30 a.m.

Break




10:45 a.m.

Public Comment


Public

11:45 a.m.

Lunch




1:00 p.m.

Patients Registry Models
Autism Patient Registry

National Database for Autism Research

Patients Like Me

Beth A. Collins Sharp, Ph.D., R.N.


Dan Hall, Program Manager

TBD

2:00 p.m.

Future Directions
Post IOM Report Release

Model: Follow up of an IOM Report
"Epilepsy Across the Spectrum"



Nancy C. Lee, M.D.
Designated Federal Officer (DFO)

Margaret Jacobs
Science Community Liaison
American Epilepsy Society

Committee Discussion

3:15 p.m.


Break



3:30 p.m.

Future Directions
Committee Discussion


Committee members

4:15 p.m.

Future Directions
Audience Open Forum

Comments and Questions

Persons in attendance

5:00 p.m.

Adjourn

 

[shannah]

First up is Polyanna praising what a wonderful day yesterday was...

 

[Rrrr]

does anyone else want to watch this on an iphone? i can't seem to get it on my iphone.