MEadvocacy Opts Out of CDC’s Technical Development Workgroup

[Nielk]

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.

Please read more here - http://www.meadvocacy.org/meadvocacy_opts_out_of_cdc_s_workgroup

 

[Mark]

Was the following question the one you're referring to Nielk?

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?

Yesterday, I received an email from the contractor which included that question in error, relaying Dr Unger's response to that question and to some other questions which I asked concerning the criteria for our representative. It looks like the above question got tacked on to the end of the questions in my emails in error. Dr Unger's response to that question is below.

We are aware of the CFSAC comments on the IOM and these are being included for discussion.

 

[Nielk]

Was the following question the one you're referring to Nielk?



Yesterday, I received an email from the contractor which included that question in error, relaying Dr Unger's response to that question and to some other questions which I asked concerning the criteria for our representative. It looks like the above question got tacked on to the end of the questions in my emails in error. Dr Unger's response to that question is below.

Yes, @Mark, that was the question. If you go to our blog, you can read our reply to Dr. Unger mentioning the question and reply. http://www.meadvocacy.org/meadvocacy_opts_out_of_cdc_s_workgroup

 

[jimells]

I can well imagine this was a difficult decision for MEadvocacy to make. I share your lack of confidence in CDC and the ability of TDW to have much influence on the end result. Still, I think it will be useful to have Phoenix Rising on the committee in order to report on and document the process, especially if the CDC continues their heavy-handed tactics in dealing with patients, advocates, and advisory committees. It's always better to have more ammunition than it is to have less.