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We Will Not Be Accomplices in ‘Harming Patient Care’ - Name - US

Nielk

Senior Member
Messages
6,970
http://www.name-us.org/AdvocacyPages/HHS_IOM_BORG.htm

In the past few months, over 200 ME & CFS Experts and Advocates worldwide rightfully, authoritatively asserted to government officials that failure by the US Dept of Health and Human Services (HHS) to acknowledge more recent and developing clinical definitions and research consensus criteria “…will significantly impede research and harm patient care.”

They did this for very good reason, we believe. The consensus criteria cited (CCC; ICC) are developed and endorsed by ME & CFS experts, independent of historically and currently manipulative government health agencies. An appropriate and justified move, given the history and lack of meaningful change on the part of the government

But US health agencies are repeating history. They are harming patient care. Veterans of this disease know the drill.

For at least the fourth time, with a disease they’ve historically badly misrepresented (much to the harm of both patients and researchers), US health agencies are attempting to again wrest control, this time over consensus criteria by experts who have the rightful, appropriate authority to write and endorsed these peer-reviewed criteria.