CFSAC meeting May 22-23, 2013

[Andrew]

**Save the Date for the Spring Meeting of the CFSAC on May 22-23, 2013 at the Hubert H. Humphrey Building, Room 800, 200 Independence Avenue, S.W., Washington, D.C. 20201**
http://www.hhs.gov/advcomcfs/

 

[Andrew]

More information https://www.federalregister.gov/art...e-chronic-fatigue-syndrome-advisory-committee

 

[Nielk]

Andrew - do you plan to testify?

 

[Andrew]

Not sure what I'm going to do.

 

[Nielk]

Not sure what I'm going to do.

Same here. I figure that there is a set time allocated to hear patient testimonies. If I don't take the slot, someone else will. I have to figure out whether I have an urgent message to share that is important for all to hear.

I would welcome any advice on this.

 

[justinreilly]

We can now submit comments through May 15


The Spring 2013 CFSAC meeting will be held May 22–23, 2013
Registration is open:
http://www.blsmeetings.net/CFSACMay2013/

To register for public comment:
http://www.blsmeetings.net/CFSACPublicCommentMay2013/

The Federal Register notice for the May 2013 CFSAC meeting:
http://www.gpo.gov/fdsys/pkg/FR-2013-04-30/pdf/2013-10083.pdf
The meeting will be held at the Department of Health and Human Services; Hubert H. Humphrey Building; 200 Independence Avenue SW., Room 800; Washington, DC 2020
Please remember that if you would like to work with a mentor on your public comment, contact SpeakUpAboutME@gmail.com (as soon as possible).

 

[Kati]

One of the message I got from the FDA meeting is Susan Meier from NIH saying "there is no money". what she meant is there is no money for us patients with ME. Let alone there is a 33BILLIONS $ budget for health, they couldn't take a few millions here, and a few millions there for the most neglected disease with the most unmet health care needs.

HHS needs to know that patients with ME are not crumbs.

 

[Andrew]

I think I don't feel as motivated this time. But the reasons I testified before are I wanted to show support to the people who take times out of their lives to serve on this committee. And as there are new committee members who are not CFS experts, I wanted to offer a basic historical understanding to them.

 

[Nielk]

I think I don't feel as motivated this time. But the reasons I testified before are I wanted to show support to the people who take times out of their lives to serve on this committee. And as there are new committee members who are not CFS experts, I wanted to offer a basic historical understanding to them.

I think that you should try to speak, Andrew. You have a unique perspective where you can compare ME/CFS to your cancer experience. I think that has a big impact.

 

[jspotila]

Same here. I figure that there is a set time allocated to hear patient testimonies. If I don't take the slot, someone else will. I have to figure out whether I have an urgent message to share that is important for all to hear.

I would welcome any advice on this.

SIGN UP FOR COMMENT!!!!! Oh my God, everyone who is able should sign up for comment. The agenda will include a discussion of the High Priority Recommendations, and I expect the committee to vote on which of their 60-70 recommendations should be designated as High Priority.

The reason I got Public Citizen involved in this was to bring it to a public session so that patients could offer input on what should be the high priorities. Please please take the time to do this. There will be more info on my blog and perhaps coming from other groups on suggested high priorities. I have already gone through all the recommendations in a series that begins here: http://www.occupycfs.com/2013/03/06/tangled-web/

If you think that one of the research recommendations should be first - or Centers of Excellence or physician education or pediatric services, etc etc etc - YOU MUST SPEAK UP! I know this is a complicated and difficult topic. I'm working to get simplified information out to the community. But this will be our only shot to tell the CFSAC which of their recommendations should have the highest priority. I am concerned about what they might choose without our input.

 

[justinreilly]

Thank you Jenny, for your work on this. I agree with your comment.

Keeping up the drum beat of the urgency of dealing with ME appropriately and what the top priorities are is essential, IMO. You don't have to spend a lot of time and energy. In fact, I recommend spending just a little time on this in order to conserve precious energy.

You could simply write a few simple sentences on the above topics- the urgency and top priorities. You could state that these are very important topics but you are too sick to write anymore, just so they don't mistake brevity for lack of interest or lack of importance.

If many people took a little bit of time to just write a few sentences and send it in, this would be more helpful, IMO, than a few people writing 5 page testimonies.

Please write in! thanks guys!!

 

[Andrew]

I'm not sure I will be able to speak. But after looking over the list of recommendations, I'm shocked at how many say to have the CDC do this and that.

Given a choice, I'd rather the funding to to Centers of Excellence.

 

[jspotila]

Mark has asked me to write an article for PR on the recommendations, so I hope to do that in the next week. NAAME is also working on a position statement on the recommendations.