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PANDORA: Feedback to IOM

Ember

Ember

Senior Member
Messages
2,115
P.A.N.D.O.R.A., Inc. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.
Below is a letter to the IoM regarding the selected provisional panel. PANDORA participated in the process and have signed the letter. Several other organizations and individuals have also signed with a special thanks to the team at RMCFA....

http://www.pandoraorg.net/uploads/Letter_to_IoM_about_Provisional_Committee.pdf
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Excerpt:
In collaboration with other organizations and other patient advocates, we researched each of the provisional members. Overall, we are pleased with the diverse perspectives and expertise the provisional members bring to this complex disease. We acknowledge that the IoM evidently put special effort in creating an overall balance. We also appreciate the IoM recognizing the importance of appointing a majority of ME/CFS experts on the committee, including quite a few that patient organizations and patients recommended to you.
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justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Why are they "pleased over-all" and not demanding the contract be halted? Also, what's this about 'look into' Alegria and Mulrow. They never should have been proposed in the first place. How is it not clear that Alegria conflates CFS and Neurasthenia? The other stuff about getting 4 more experts on (and using ME) was very good.
 
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