This meeting was referred to during the update yesterday by the FDA ex-officio. I believe Janet Maynard (FDA ex-officio) was referring to the FDA D-ribose meeting because it is something that has been used by patients.
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CFSAC webinar 17 & 18 May 2016
- Thread starter Sasha
- Start date
This meeting was referred to during the update yesterday by the FDA ex-officio. I believe Janet Maynard (FDA ex-officio) was referring to the FDA D-ribose meeting because it is something that has been used by patients.
Bob
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Jennie Spotila's summary...
CFS Advisory Committee Meeting Outcomes
http://www.occupycfs.com/2016/05/21/cfs-advisory-committee-meeting-outcomes/
CFS Advisory Committee Meeting Outcomes
http://www.occupycfs.com/2016/05/21/cfs-advisory-committee-meeting-outcomes/
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
This is a bit of a side-show, but I'll be interested in the outcomes... It could be very useful evidence...
Jennie Spotila said:
Simon
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CFS Advisory Committee Meeting Outcomes | Occupy CFS
Wow, loads of great information here. My personal highlihgts
Lots of info on NIH plans inc RFAs in June/July, plan for mecfs Funding Concept:
Dr Vicky Whittemore:
First, the Centers of Excellence Working Group led by Dr. Gary Kaplan gave a compelling presentation on the need for Centers of Excellence.
The justification for Centers is based on ME/CFS patients being an under-served population with minimal access to expert care.
The Working Group found several existing NIH mechanisms for funding Centers, and examples of Centers for other diseases. The Working Group also presented on the concept of “core competencies,” a model to ensure that each Center is able to provide expert clinical care, conduct research and clinical trials, and educate young researchers and healthcare providers. After discussion, CFSAC passed a recommendation that HHS fund twelve Centers of Excellence, attached to academic institutions, for a minimum of five years and total investment of $60 million.
Carol Head said time is short to get things done
Carol Head of SMCI called for greater urgency from HHS to address the many significant needs of ME/CFS patients. She acknowledged that NIH has taken some positive steps, and said she is trying to be optimistic. But Head said that it is not clear that the federal government will make the changes demanded by the reports it has commissioned, especially an order of magnitude increase in research funding. Furthermore, in seven months there will be a new administration, and Head asked if we will have to go back to square one with new leaders. Speaking with frankness, Head commented, “Time is running out to believe in federal changes for funding.”
Wow, loads of great information here. My personal highlihgts
Lots of info on NIH plans inc RFAs in June/July, plan for mecfs Funding Concept:
Dr Vicky Whittemore:
- To promote the interpret-ability of research, NIH will create Common Data Elements to be used in all NIH funded ME/CFS research.
- A plan for communication with stakeholders is also in preparation
- Dr. Whittemore said that NIH will issue a Request for Information on research priorities, which will give the public a chance to weigh in on NIH’s direction.
- Finally, Dr. Whittemore said she will present a “funding concept” to the Council for the National Institute of Neurological Diseases and Stroke on May 26th. If approved, the concept will then need approval by the participating Institutes.
- Dr. Whittemore said the Request for Applications would hopefully be issued in June or July, with funding to begin next year.
First, the Centers of Excellence Working Group led by Dr. Gary Kaplan gave a compelling presentation on the need for Centers of Excellence.
The justification for Centers is based on ME/CFS patients being an under-served population with minimal access to expert care.
The Working Group found several existing NIH mechanisms for funding Centers, and examples of Centers for other diseases. The Working Group also presented on the concept of “core competencies,” a model to ensure that each Center is able to provide expert clinical care, conduct research and clinical trials, and educate young researchers and healthcare providers. After discussion, CFSAC passed a recommendation that HHS fund twelve Centers of Excellence, attached to academic institutions, for a minimum of five years and total investment of $60 million.
Carol Head said time is short to get things done
Carol Head of SMCI called for greater urgency from HHS to address the many significant needs of ME/CFS patients. She acknowledged that NIH has taken some positive steps, and said she is trying to be optimistic. But Head said that it is not clear that the federal government will make the changes demanded by the reports it has commissioned, especially an order of magnitude increase in research funding. Furthermore, in seven months there will be a new administration, and Head asked if we will have to go back to square one with new leaders. Speaking with frankness, Head commented, “Time is running out to believe in federal changes for funding.”