MEadvocacy, along with other patient organizations and advocates have been invited to serve on a Technical Development Workgroup (TDW) for the Center of Disease Control and Prevention (CDC). The role of this group will be to provide input on educational materials to doctors and upgrading the CDC website based on the IOM report. The advisory group of MEadvocacy deliberated whether we would serve ME patients best by presenting the “ME view” at this working group. We ultimately decided against taking part in this workgroup based on the fact that a key question we asked Dr. Unger about what information could be brought up at these meetings, was not directly answered.
Furthermore, it has become very clear that the U.S. government health agencies have no regard for their own advisory committee and are not acting in good faith to benefit ME patients. This fact was verified with the Department of Health and Human Services’ (HHS) empty reply to CFSAC’s recommendations of August 2015. Another year of delays and distraction from any real substantive actions, while we have a deteriorating patient population and aging experienced advocates who have been demanding serious and urgent actions from the government for 30 years. MEadvocacy is committed to supporting the ME patient population and will find alternative solutions to educating medical professionals and the public on the disease myalgic encephalomyelitis and we welcome any suggestions on this topic.
The following is our reply email to the CDC:
Dr. Unger (c/o Ariel Weiss):
MEadvocacy received an invitation to participate on the Technical Development Workgroup (TDW) on December 17th, 2015. We have been awaiting an answer from Dr. Unger to a critical question that we posed on December 30th, 2015.
The question was: Will there be any allowance for information of symptoms that appear on the CFSAC recommendations, CCC and/or ICC, yet are not listed on the IOM to be heard and taken into consideration?
Despite our numerous follow up emails requesting an answer to our question, Dr. Unger and the CDC failed to fully and directly answer our question. Finally, yesterday, January 21st, 2016 the following reply came from Ariel: We are aware of the CFSAC comments on the IOM and these are being included for discussion.
This reply does not take our full question into consideration. It is actually using the tactic of deflection. MEadvocacy’s concern was not solely CFSAC’s recommendations to the IOM. Our inquiry was specifically about the allowance of citing symptomology from the Canadian Consensus Criteria (CCC) and the International Consensus Criteria (ICC).
MEadvocacy is a non-profit organization advocating for patients suffering from the neuroimmune disease Myalgic Encephalomyelitis (ME). We promote the use of ME criteria such as the Canadian Consensus Criteria (CCC) and the International Consensus Criteria (ICC) as well as the original name myalgic encephalomyelitis.
Furthermore, the recent release of HHS’s responses to the CFSAC August 2015 recommendations has revealed the total disregard of input from any stakeholder outside the government agencies. There has been no effort in implementing any of CFSAC’s recommendations.
Based on the deflection of our key question and the total disregard of the voting members of CFSAC’s input, we have no confidence in the equity of the process and that the voice of MEadvocacy will carry any weight with the CDC.
We have therefore decided to opt out of the CDC workgroup tasked with updating educational material and website based solely on the IOM.
Sincerely,Tracey SmithMEadvocacy.orgAdvisory Group Member