On August 27th, #MEAction published a petition calling for the U.S. Center for Disease Control and Prevention (CDC) to immediately halt its plan to issue a sole-source contract – meaning there was no true competitive bidding process in place – to the Pacific Northwest Evidence-based Practice Center (EPC) for conducting a literature review for myalgic encephalomyelitis (ME).
The community had immediate concerns since the same contractor – the EPC – had previously conducted a literature review of ME for the Agency for Healthcare Research and Quality in 2014, and had recommended graded cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as effective treatments, failing to account for the use of the Oxford definition and other overly broad diagnostic criteria in its review.
The CDC had also not sought the input of the patient community, expert researchers or doctors in deciding to issue this contract. Read here for the full scope of problems with the proposed EPC contract.
The good news is that you spoke up. Over 8,000 of you signed our petition demanding that this sole-sourced contract be stopped. This community has proven over and over again that we will demand a fair, open and reasonable process.
On August 30th, #MEAction volunteer, Terri Wilder, and ME activist, Mary Dimmock, met with the CDC personally to express our deep concerns.
On September 8th – a Saturday – the CDC suddenly issued the contract solicitation as a competitive bid proposal. Unfortunately, they gave less than four additional business days for anyone to apply. The CDC did not advertise that it had issued a new solicitation, and the community only found out about the new deadline a couple days before the due date.
We knew we had to act fast.
#MEAction reached out to the New York State Department of Health (NYSDOH) AIDS Institute about working together to submit a bid for the contract to conduct a literature review of ME. The plan being for #MEAction to provide administrative oversight, and subcontract to the NYSDOH AIDS Institute to conduct the evidence review on ME.
We reached out to NYSDOH AIDS Institute for this contract because of their exceptional record for developing treatment guidelines and evidence reviews. #MEAction decided that this would serve as a strong and important partnership.
#MEAction did not plan to take something like this on, but we could not let this contract be given to a center that has contributed to hardship for the ME community in the past. We support patients first, and we are willing to take strategic steps towards improving clinician care for our community.
We had less than 48 hours to submit our bid. Luckily, we have an incredible group of dedicated volunteers who motivated us to get this done. They reviewed our application with us late into the night, others proofreading in the morning. Two volunteers near Atlanta – one being the incredible Elizabeth Burlingame – drove an hour to personally hand in our application to the CDC to meet the abrupt deadline.
Nothing about this process has been perfect, but we are confident that our partnership with the NYSDOH AIDS Institute can provide a literature review of ME that is accurate and beneficial for the ME community.
Current status: A month has passed since we submitted the bid. We hope the CDC listens to reason and issues this contract to #MEAction and the New York State Department of Health AIDS Institute. We will keep you updated on our next steps and our next actions. We will continue to fight for all people with ME.
In August, we shared with you that we and six other ME/CFS organizations had submitted a proposal to the National Center of Health Statistics (NCHS) to fix the coding of ME/CFS in the US International Classification of Diseases (ICD-10-CM). Today, we are writing with an update on that proposal and asking that you sign the