After four weeks of intense work, a group of advocates has submitted forty pages of comments on the P2P systematic evidence review. We published a summary of our comments last week. If you want to read the full document, you can view it in two pieces:
Part One addresses the issues with the Evidence Review’s base assumption that all CFS and ME definitions represent the same disease or set of closely related diseases, and the analysis and conclusions drawn regarding diagnostic methods, accuracy and concordance of definitions, subgroups and diagnostic harms.
Part Two addresses the analysis and conclusions drawn regarding treatment effects and harms; and issues related to applicability, reliability and future research directions.
I was proud to work with the following advocates who join me in making these comments:
- Mary Dimmock
- Claudia Goodell, M.S.
- Denise Lopez-Majano, Speak Up About ME
- Lori Chapo Kroger, R.N., PANDORA Org CEO and President
- Pat Fero, MEPD, President, Wisconsin ME & CFS Association, INC.
- Darlene Fentner
- Leonard Goodell, Jr.
- Alan Gurwitt, M.D.
- Wilhelmina D. Jenkins
- Joseph Landson, M.S.
- Margaret Lauritson-Lada
- Jadwiga Lopez-Majano
- Mike Munoz, PANDORA Org Board of Directors
- Matina Nicholson
- Charmian Proskauer
- Mary M. Schweitzer, Ph.D.
- Amy L. Squires, MPA
- Susan Thomas
- Erica Verrillo, Author