Nielk
Senior Member
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Eileen Holderman’s testimony to CFSAC on May 18, 2016
Excerpt:
“For over 30 years, US Government health agencies have created erroneous definitions and names for this specific neuroimmune disease - Myalgic Encephalomyelitis - causing devastating harm to patients. And other nations, like the UK, who created the flawed Oxford definition used in the PACE Trial, have done the same.
Our community needs NIH to step up and officially state that the Reeves' criteria and questionnaires will not be used in the NIH Intramural Study for ME/CFS; resolve the outstanding problems with the study design and protocol; and establish a transparent, 2-way communication and participation process with all ME experts.”
Read the full text of Eileen’s oral testimony here - http://www.meadvocacy.org/eileen_holderman_cfsac_public_comment_about_nih_study
Excerpt:
“For over 30 years, US Government health agencies have created erroneous definitions and names for this specific neuroimmune disease - Myalgic Encephalomyelitis - causing devastating harm to patients. And other nations, like the UK, who created the flawed Oxford definition used in the PACE Trial, have done the same.
Our community needs NIH to step up and officially state that the Reeves' criteria and questionnaires will not be used in the NIH Intramural Study for ME/CFS; resolve the outstanding problems with the study design and protocol; and establish a transparent, 2-way communication and participation process with all ME experts.”
Read the full text of Eileen’s oral testimony here - http://www.meadvocacy.org/eileen_holderman_cfsac_public_comment_about_nih_study