Jennie Spotila looks forward to the next meeting of the CFS Advisory Committee – and explains how you can participate.
The spring meeting of the CFS Advisory Committee is May 22-23, and we only have a few weeks to prepare. The agenda is not available yet, but we do know about a few new things happening at the meeting.
There will be some new faces at the table. Rebecca Collier, RN has been appointed to replace Dr. Jacqueline Rose, who resigned last June. Dr. Ann Vincent recently resigned from the Committee, so the number of voting members will remain at 10 (the Charter provides for 11 members).
This will also be the first meeting for the new non-voting liaisons. When the Charter was renewed in September 2012, three non-voting positions were added to the Committee for liaisons from patient organizations. Applications for the positions were due in February 2013, and Dr. Nancy Lee announced her selections in April 2013. Representatives from the IACFS/ME, the CFIDS Association, and the New Jersey CFS Association will attend the meeting. It will be interesting to see how much they are able to participate in discussions, and whether the Committee actively seeks their input on the issues.
High Priority Recommendations
You may recall the controversy earlier this year over the Committee’s High Priority Recommendations. The Committee created this document without public discussion or input. After Public Citizen protested this violation of the Federal Advisory Committee Act, Dr. Nancy Lee promised to bring the document to the full Committee for discussion.
Since 2004, the Committee has made over 70 recommendations, many of which are obsolete or completed. Some of the most important and most repeated recommendations remain unfinished, including establishing Centers of Excellence and increasing NIH funding. A detailed analysis of all the recommendations is available on my blog, starting here.
We need to make sure that the Committee identifies the recommendations that are the highest priority for patients. That means that the Committee needs to hear from us on this issue. What recommendations do you think should be made the highest priority? I’ve posted the full text of the recommendations that still need action here, and I recommend that you take the time to read the full text. But I know this can be overwhelming, especially for our ME/CFS brains, so here are the basic themes to choose from:
- Pool resources to create Centers of Excellence, using physical or virtual locations.
- Adopt the term “ME/CFS” across HHS programs.
- Hold a stakeholders’ workshop to reach a consensus on case definition.
- NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS.
- RFA for clinical trials research.
- NIH should issue a $7-10 million RFA for outcomes measures, and biomarker discovery and validation.
- CFSAC recommends that you allocate specific funds to study patients with ME/CFS from past cluster outbreaks.
- CFSAC recommends that you allocate funds to study the epidemiology of patients with severe ME/CFS.
- Classify ME/CFS at G93.3 in the ICD-10-CM.
- Establish interagency/interdepartmental effort to coordinate support for children and young adults with ME/CFS.
- Educate educators and school nurses about ME/CFS.
- Remove the Toolkit from the CDC website.
- Organize a workshop to engage experts on disability assessment.
It’s a lot to process and choose from. But patients need to speak up and be heard on this issue. You can help the CFSAC choose the right priorities to send to Assistant Secretary Howard Koh by expressing your opinions about what needs the most urgent attention. If you can, please sign up for public comment and tell the Committee which priorities matter most to you. If you are unable to speak at the meeting, then please consider writing to the Committee to express your views.
How to Participate
If you want to provide public comment in person or by phone, you must register by May 15th: https://www.blsmeetings.net/CFSACPublicCommentMay2013 Unlike previous meetings, you are not required to submit your written testimony in advance unless you want it to be part of the public record of the meeting. You are limited to 5 minutes (or 5 typed pages), and your comments are due by May 15th to this email address: CFSACMay2013@seamoncorporation.com. You will receive confirmation of your speaking slot for comment by May 17th.
More details about the meeting, including how to register to attend in person, can be found in the Federal Register notice. You will be able to watch the meeting live at www.HHS.gov/Live and information about listening by phone will be posted to the CFSAC website.
I know some people feel the CFS Advisory Committee is a bureaucratic exercise in futility, but these meetings give us an opportunity to be heard. It’s worth the time and energy to publicly express your views. Maybe they don’t always listen to us or follow through on what is most important to patients, but if we remain silent then we guarantee that our opinions will be ignored.