The second half of the public meeting concerning the IOM’s review of diagnostic criteria for ME/CFS was devoted to presentations by FDA and ME/CFS associations.
Presenters included:
- Sara Eggers, FDA, Voice of the Patient Report
- Lori Chapo-Kroger, PANDORA Org , Let’s Get It Right group
- Mary Schweitzer, for Pat Fero, Wisconsin ME/CFS Association, Inc., Let’s Get It Right group
- Carol Head, CFIDS Association of America, Let’s Get It Right group
- Pat LaRosa, New Jersey Chronic Fatigue Syndrome Association, Inc., Let’s Get It Right group
- Gabby Klein, Phoenix Rising
- Charmian Proskauer, Massachusetts CFIDS/ME & FM Association, Let’s Get It Right group
- Jennie Spotila, OccupyCFS
You can read the meeting agenda
HERE.
You can watch presentations
HERE.
You can read information about the committee members
HERE.
It is not too late to submit comments to the IOM Committee. Send your comments to:
mecfs@nas.edu
Sara Eggers, FDA Office of Program and Strategic Analysis/Office of Strategic Programs, Center for Drug Evaluation and Research (the office which is coordinating the Patient Focused Drug Development Initiative) (
Video) (
Transcript courtesy ME/CFS Forums)
Key message: The key to success is meaningful engagement and valuable input by the patients and the patient community....
Remarks from ME/CFS Advocates and Associations
Lori Chapo-Kroger, PANDORA Org (Video)
PANDORA Org submitted two written comments to the IOM committee for the public meeting. 1) The Needs of the Severely Ill has pictures to show how people suffer with this illness, and 2) Critique of the NICE Guidelines. (Transcripts
HERE.)
Key message: The IOM study is important, because until we have a universally accepted biomarker, the clinical definition will be the front-line diagnostic tool that determines the course of clinical care and treatment management for patients with ME....
Mary M. Schweitzer, Ph.D., Wisconsin ME/CFS Association, Inc. (
Video) (
Transcript)
Key message: This is a national public health catastrophe. We need to address it with urgency, not by going back to the drawing board 30 years ago....
Carol Head, CFIDS Association of America, President and CEO of the CFIDS Association of America (
Video) (
Transcript)
Key message: Patients wait for years, and see many doctors, before they obtain a diagnosis. We believe that the Canadian Consensus Criteria can be optimized as a clinical case definition by applying a standardized methodology, validation of criteria, and nationwide dissemination to health professionals....
Pat LaRosa, New Jersey Chronic Fatigue Syndrome Association, Inc. (
Video)
(Transcript)
Key message: We urge you to adopt the name Myalgic Encephalomyelitis (ME) - a name that is appropriate to the severity of the disease. The name CFS discourages proper coding, and creates numerous obstacles for patients....
Charmian Proskauer, Massachusetts CFIDS/ME & FM Association, president of the Massachusetts CFIDS/ME & FM Association (
Video) (
Transcript)
Key message: A separate clinical definition for pediatric ME/CFS has been developed and should be added to the list of clinical definitions that you consider in your study....
Gabby Klein, Phoenix Rising (Video) (
Transcript)
Key message: ME is an organic, complex, seriously disabling disease, which needs a definition at least as strict as the CCC or ICC. Myalgic Encephalomyelitis. (ME) should be the term used for the disease....
Jennie Spotila, OccupyCFS (
Video) (
Transcript courtesy ME/CFS Forums)
Key message: The definition of ME/CFS must be both accurate and precise....
