Fall 2012 CFSAC Meeting Sessions on YouTube

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ProHealth.com • October 20, 2012

The Fall 2012 CFSAC Meeting, held Oct 3 & 4 in Washington, DC, is now available on the HHS YouTube channel. The event has been broken into a dozen sections, listed below with links & summary details. Audio is supported by running subtitles.

DAY 1 Welcome and Opening Remarks - http://www.youtube.com/watch?v=4Zl2RX4URuI

Introduces CFSAC members, reps of various HHS agencies & patient reps. Dr. Howard K Koh, Assistant Secretary for Health, provides update on progress and plans. Notes HHS is very aware that President Obama has expressed his interest in raising the profile of ME/CFS research & this is very positive. Notes the value of the Lipkin repository of blood samples now available for research, and much more.

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Public Comment on Day One, AM - http://www.youtube.com/watch?v=oIGpfvfFZ1w

Strong, well-articulated criticisms, testimonies and recommendations by: Rosemary Underhill; Amy Squires, Sue Jackson; Gerald Spinhern (by proxy); Lori Chapo-Kroger, RN; Robert Dickie (SVP Hemispherx Biopharma); Mary Schweitzer; Joan Grobstein, MD; Matthew Lopez Mohano (by proxy, his mother); Laura Hillenbrand (by proxy, her father); Pat Fero.

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Agency Updates from HRSA, NIH, and FDA - http://www.youtube.com/watch?v=buDxhejdg90

Big emphasis on importance of advocacy community’s activities. Provider education; Trans-NIH Working Group & advice on the keys to building more NIH funding for research (informed advocacy community activities crucial to increase number of researchers applying for grants to do relevant research… Obama encouragement helpful); FDA report on stakeholders’ activities to support drug development for ME/CFS, and a presentation on drug development status.

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Biomarkers – An Overview & Future Look - http://www.youtube.com/watch?v=01hZYq4GMtI

Presenters: Jordan Dimitrakoff, MD, PhD, Harvard; Dr. Mary Ann Fletcher, University of Miami Laboratory. (Raising the question of whether the hurdle to getting biomarker research really going is the lack of a critical mass of researchers with an understanding of ME/CFS submitting applications for grants, or limited funding, or both?)

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FDA & Drug Development - http://www.youtube.com/watch?v=IGASSh7YV3s

Presenter Rear Admiral Sandra Kweder. She explains drug trial design requires defining how improvement can be measured. Fascinating presentation & discussion highlighting challenges & possibilities.

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Public Comment on Day One, PM - http://www.youtube.com/watch?v=_fIEeQBdvxM

Again strong, well researched and gripping commentaries by: Joseph Langson; Donna Pierson; Deborah Waroff; Mary Dimas; Denise Lopez Mohano; Faith Newton; Jennifer Spotilla; Andrew Bogelman; Jill McLaughlin; and patient advocate Courtney Miller – who encouraged listeners to email Pres. Obama to thank him for becoming engaged in elevating the importance of ME/CFS within HHS, and proposed a 10-point NIH strategy for achieving a breakthrough in CFS research.

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Committee Discussion & Plans for Day Two - http://www.youtube.com/watch?v=Fs1A6KhHInU

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DAY 2: Opening Remarks & Agency Updates - http://www.youtube.com/watch?v=PWBmqd8LDhg

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Social Security Administration - http://www.youtube.com/watch?v=af_r5LiIjXQ

Presenter: SSA official Art Spencer. Explains and answers questions on Social Security-Administered Disability Program policy

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Public Comment on Day Two - http://www.youtube.com/watch?v=qGb0U6EaI4o

More fine contributions by: Dr. Lily Chiu; Natina Nicholson; Billy Moore (expressing the despair many patients suffer); Robert Miller (calls for NIH to allocate $100M to CFS research - “Fund it and they will come!”); Charlotte Gonzales; Matthew Fairman; Jedwiga Lopez Mohano (by proxy, her daughter); Janelle Wiley.

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ME/CFS Organizations - http://www.youtube.com/watch?v=MTHpny0u-XU

Presentations on their activities and what they recommend.

• Massachusetts CFIDS/ME & FM Assoc. (Dr. Alan Gurwitt, pediatric ME/CFS specialist). “NIH & CDC have to present unambiguous and accurate information presenting the current state of knowledge” to overcome ignorance, biases & lack of will at all levels of medicine.

• CFS Solutions of West Michigan, the new P.A.N.D.O.R.A. (Lori Chapo-Kroger, RN);

• Wisconsin ME/CFS Association (Pat Fero)

• IACFS/ME (Fred Friedberg, PhD)

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ME/CFS Case Definition - A Path Forward - http://www.youtube.com/watch?v=NFaXiiSdZqI

The CFSAC members agree to recommend that the U.S. HHS Secretary:

“Promptly convene at least one stakeholders (ME/CFS experts) meeting in consultation with CFSAC members to examine the 2003 Canadian Consensus Document Case Definition and its utility for diagnosis and treatment of ME/CFS."

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Finalize Recommendations to HHS Secretary - http://www.youtube.com/watch?v=CO9bO-udcY0

In addition to the case definition stakeholders meeting, they recommend:

• Create a dedicated standing committee for review of ME/CFS proposals at NIH.

• Issue an RFA of $7 million to $10 million to establish ME/CFS outcome measures, including but not limited to biomarker discovery and validation

• Endorse the Coalition 4 ME/CFS option 1 proposal for the ICD10-CM that was recommended at the Sep 19, 2012 National Center for Health Statistics public meeting. [Restore CFS to “Diseases of the Nervous System” in the US, as previously, under the G93.3 subtype code, which includes ME and post viral fatigue syndrome.]

• Allocate specific funds to study cluster outbreaks of ME/CFS.

• Allocate funds to study the epidemiology of patients with severe ME/CFS.

Finally, the CFSAC members unanimously agreed to send a letter with all their signatures to President Obama thanking him for elevating ME/CFS.