To: Dr. Inger Damon, Director of the Division of High-Consequence Pathogens and Pathology, CDC

Don’t Hire Shoddy Contractor: ME Treatment Guidelines Need Community, Expert Input!

Dear Dr. Inger Damon,

We are alarmed that the CDC intends to issue a sole-source contract with the Pacific Northwest Evidence-based Practice Center (EPC) to expedite the development of federal evidence-based treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME).

We demand that this contract not be issued and that the project be put on hold for the following reasons:

1) CDC has undertaken this project and the sole source contract without any discussion with or involvement of people with ME or the doctors who treat them.

2) The EPC previously conducted a systematic evidence review in 2014, but failed to account for the use of the Oxford definition and other overly broad diagnostic criteria used in many studies and which do not require a hallmark symptom of this disease—post-exertional malaise (PEM). This led to the erroneous conclusion that GET and CBT were effective treatments for people with ME.

3) The ME community made repeated attempts to engage the EPC in addressing multiple methodological concerns, but was ignored until 2016.

4) When the EPC finally reanalyzed its review in light of those criticisms two years later, it found there was insufficient evidence for the efficacy of GET and CBT. However, EPC refuses to publish this reanalysis in a peer-reviewed journal. This leaves the 2014 review publication intact, despite the EPC’s subsequent revision of the recommendations.

5) Patients are seen by a small number of expert clinicians who have decades of experience with ME. Research in ME is performed by a small group of dedicated scientists. The involvement of both are essential to the development of logical, ethical treatment recommendations for people with ME. The uneven quality of the peer-reviewed literature in this underfunded disease means that expert scientists and clinicians’ involvement is absolutely critical: they are best positioned to assess the available evidence and make recommendations. Yet CDC has not clarified how they will reach out to incorporate the knowledge and experience of those who know the disease best.

This project must be put on hold, and the CDC must collaborate with the ME community to ensure that they address the challenges that still exist, engage the community in a transparent and collaborative process to develop the project protocol, and incorporate expert knowledge in the evidence review and in any resultant treatment guidelines.

We urge you to pause this process immediately and meet with #MEAction at your earliest convenience to discuss these concerns.

Sincerely,

Why is this important?

The CDC is 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 treatment (https://www.fbo.gov/spg/HHS/CDCP/PGOA/25153/listing.html). Unfortunately, this same contractor was hired four years ago to do a similar literature review of the evidence base for ME treatments by a CDC sister-agency, the Agency for Healthcare Research and Quality (AHRQ).

The previous EPC project turned out to be a years-long struggle for the ME community. Advocates pointed out the problems with the unsuitable literature used to produce EPC’s work over and over, only to be repeatedly brushed off. When the EPC published its report in 2014, it 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 an #MEAction petition to CDC and AHRQ (https://my.meaction.net/petitions/call-for-cdc-and-ahrq-to-investigate-pace) did EPC finally issue a reanalysis TWO YEARS LATER. However, they still refused to publish this 2016 addendum in a peer-reviewed journal, making their conclusions effectively invisible to developers of treatment guidelines for ME. This is not a contractor whose expertise or quality of work the CDC should trust.

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.

We have to stop this. We have no intention of letting history repeat itself without a fight.

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:

1) Create a TRANSPARENT and COLLABORATIVE approach to future guidelines for ME that engages advocates and community representatives; and
2) Include experienced ME researchers and expert practitioners in any process that leads to treatment recommendations for ME.

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.

How it will be delivered

#MEAction representative Terri Wilder and advocate Mary Dimmock met with the CDC on 8/30/18 to express our community's serious concerns with this project. We have shared the text of the petition with the CDC and notified them of the 7,780 signatures. 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 on the CDC response to our demands.


Reasons for signing

  • I signed this petition to emphasize the importance of the ME community to be included in creating guidelines for treatment. Those who live it - know it.
  • I'm suffering from M.E. We need the CDC to confer with M.E. experts, not with an institute that has been wrong before and which is ignorant of this devastating illness.
  • I am signing for everyone who loves someone with ME. My wife has been suffering for many years and I have been suffering right along side of her. We need the CDC to take this seriously!

Updates

2018-10-18 15:45:19 -0400

A month has passed since the CDC's revised solicitation deadline and we still haven't heard the final outcome of the CDC contract solicitation. We want to update you that less than 48 hours before the CDC deadline we decided to submit our own bid for this contract in partnership with the New York State Department of Health AIDS Institute.

#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. Nothing about this process has been perfect, but we are confident that our partnership with the NYSDOH AIDS Institute could provide a literature review of ME that is accurate and beneficial for the ME community.

Full update:
https://www.meaction.net/2018/10/18/cdc-contract-update-nys-depart-of-health-and-meaction-bid-for-contract/

2018-09-11 18:29:44 -0400

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:
https://www.fbo.gov/spg/HHS/CDCP/PGOA/75D301-18-Q-69445/listing.html

2018-08-31 19:43:18 -0400

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.

2018-08-28 23:29:59 -0400

5,000 signatures reached

2018-08-28 03:40:02 -0400

1,000 signatures reached

2018-08-27 14:36:23 -0400

500 signatures reached

2018-08-27 09:27:23 -0400

100 signatures reached

2018-08-27 08:20:17 -0400

50 signatures reached

2018-08-27 07:39:43 -0400

25 signatures reached

2018-08-27 07:23:12 -0400

10 signatures reached