PETITION UPDATE (Tuesday, September 11, 2018)
The CDC has posted an updated, competitive bid solicitation for the development of federal treatment guidelines for ME. The community outcry, and over 8,000 petition signatures, protesting the previous rigged, sole-source contract got the CDC’s attention. Yet the solicitation is still only open through Thursday, September 13 meaning interested applicants other than the CDC’s hand-picked candidate have been given only 4 business days to apply! This is far short of the transparent process we have demanded for this project, but #MEAction will continue to fight for real community and expert input into the evidence review process and any resultant ME treatment guidelines. We will update you as we have more information.
To see the new CDC solicitation go here:
PETITION UPDATE (Friday, August 31, 2018)
#MEAction representative Terri Wilder and advocate Mary Dimmock met with the CDC on Thursday to express our community’s serious concerns with this project. We have shared the text of the petition with the CDC and emphasized that the 7,780 signatures we have already received send a clear message: this contract needs to be open to competitive bids, and there must be a transparent process with community input.
We’ve decided to keep the petition open and keep the pressure on. Please continue to sign and share! We will update you when we have more information.
We need your help! Sign the #MEAction petition to stop the CDC from repeating a terrible mistake. They are attempting to quietly hire The Pacific Northwest Evidence-based Practice Center (EPC), at Oregon Health and Science University, for a sole-source contract to help them develop new federal guidelines for ME/CFS treatment. That may not sound that bad, but there is plenty of reason to be alarmed. This same contractor was hired four years ago to do a similar literature review of the evidence base for ME/CFS treatments, by a CDC sister-agency, the Agency for Healthcare Research and Quality (AHRQ). It did not go well.
In fact, the previous EPC project turned out to be a years-long nightmare for the ME community. Over and over, advocates pointed out problems with the EPC’s work only to be repeatedly brushed off. When the EPC published its report in 2014 it disastrously included recommendations for GET and CBT, and concluded that PACE was a good trial with little bias!
Only through the dogged work of many ME advocates, and a previous #MEAction petition to CDC and AHRQ, did EPC finally issue a reanalysis two years later, but they still stubbornly refused to publish this 2016 addendum in a peer-reviewed journal which makes its conclusions effectively invisible to developers of treatment guidelines for ME/CFS.
We have to stop this. We have no intention of letting history repeat itself without a fight. But we have very little time. The CDC is trying to rush through this sole-source contract of EPC with a minimum time for us to respond, we only have until August 31, 2018. That’s FRIDAY! FRIDAY.
Sign this petition to demand that the CDC not issue this contract, put the project on hold, and meet with #MEAction immediately to assure us they will:
- Create a TRANSPARENT and COLLABORATIVE approach to future guidelines for ME/CFS,
- Not repeat the same mistakes when dealing with the challenges that still exist, and
- Include expert practitioners, who actually work with patients, in any process that recommends treatments
We need you to take this urgent action today. EVERYONE can SIGN and SHARE this petition to the CDC, including those living outside the US.