CFSAC public comment due May 15th! Speak Up!

Our community usually has common priorities that it would be good for the CFSAC to hear (from as many people as possible).

An obvious one for the May 2013 meeting is thanking the FDA for the recent Drug Development for ME and CFS Public Workshop. FDA modeled engagement and collaboration with us in ways that all of DHHS could emulate.

The agenda (included below) is only an overview of the May 2013 CFSAC agenda.

We do know that the CFSAC will generate a list of high priority recommendations and it would be very helpful for your public comment to include YOUR top 3-5 priorities for the list. Some frequently mentioned priorities (and the recommendations) are as follows:

Holding a stakeholders’ workshop to reach a consensus on case definition. CFSAC recommends that you will promptly convene (by 12/31/12 or as soon as possible thereafter) at least one stakeholders’ (ME/CFS experts, patients, advocates) workshop in consultation with CFSAC members to reach a consensus for a case definition useful for research, diagnosis and treatment of ME/CFS beginning with the 2003 Canadian Consensus Definition for discussion purposes. (10/12)

Three regarding NIH and funding:

NIH should fund ME/CFS research commensurate with the magnitude of the problem, and issue an RFA specifically for ME/CFS. ME/CFS is an illness with enormous economic and human costs. The April 2011 NIH State of Knowledge Workshop identified a number of gaps in what is known about the illness. To address these gaps warrants an interagency effort comprising, but not limited to, NIH,CDC, and AHRQ. Further, the focus should be on interdisciplinary discovery and translational research involving interacting networks of clinical and basic science researchers. Areas to be examined would include the following: identification of patient subsets for detailed phenotyping and targeted therapeutic interventions, biomarker discovery, systems biology approaches and disability assessment. To facilitate the above goal, CFSAC recommends that ME/CFS research receive funding commensurate with the magnitude of the problem and that the NIH (and/or other appropriate agencies) issue an RFA specifically for ME/CFS. (5/11)

Pool resources to create Centers of Excellence, using physical or virtual locations. CFSAC would like to encourage and support the creation of the DHHS Interagency Working Group on Chronic Fatigue Syndrome and ask this group to work together to pool resources that would put into place the “Centers of Excellence” concept that has been recommended repeatedly by this advisory committee. Specifically, CFSAC encourages utilizing HHS agency programs and demonstration projects, available through the various agencies, to develop and coordinate an effort supporting innovative platforms that facilitate evaluation and treatment, research, and public and provider education. These could take the form of appropriately staffed physical locations, or be virtual networks comprising groups of qualified individuals who interact through a variety of electronic media. Outreach and availability to underserved populations, including people who do not have access to expert care, should be a priority in this effort. (11/11)

NIH should issue a $7-10 million RFA for outcomes measures, and biomarker discovery and validation. CFSAC recommends that you instruct the NIH to issue an RFA (funded at the $7-10 million range) for projects to establish outcomes measures for ME/CFS diagnosis, prognosis and treatment which would include but not be limited to biomarker discovery and validation in patients with ME/CFS. (10/12)

and

Removal of the CDC Toolkit. CFSAC asks that the Centers for Disease Control and Prevention (CDC) remove the CFS Toolkit (both English and Spanish versions) from the CDC website. (6/12)

 

Additional background on the CFSAC recommendations can be found here – http://www.occupycfs.com/2013/05/07/full-text-cfsac-recommendations/

If you want to give public comment, you must register (https://www.federalregister.gov/articles/2013/04/30/2013-10083/meeting-of-the-chronic-fatigue-syndrome-advisory-committee )

and send public comment to CFSACMay2013@seamoncorporation.com by May 15 if you want it to be on the public record.

 

CFSAC Spring 2013 Meeting

May 22 – 23, 2013

AGENDA OVERVIEW (note – this is not the full detailed agenda, just an overview)

May 22, 2013

9:00 am – 5:00 pm

·        Call to order CFSAC Chair

·        Welcome – Principal Deputy Assistant Secretary for Health

·        Remarks from the CFSAC Chair

·        Agency Updates – CDC, CMS, HRSA, SSA

·        Public Comment

·        Presentation – Process for CMS determination of coverage for tests and treatments

·        Committee Discussion

 

May 23, 2013

9:00 am – 5:00 pm

·        Call to order CFSAC Chair

·        Agency Updates – AHRQ, NIH, FDA

·        Presentation – Information about the Affordable Care Act and the Health Insurance Marketplace

·        Public Comment

·        Presentation – How to get more clinicians involved in diagnosing and treating patients with ME/CFS

·        Committee Discussion

 

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