Petition: Stop CDC from hiring shoddy contractor for ME treatment guidelines

Joh

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#MEAction:
#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!
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.
Full text:
https://www.meaction.net/2018/08/26...idelines/?mc_cid=20165100b3&mc_eid=926b73a95d

Petition:
https://my.meaction.net/petitions/d...ty-consultation-on-new-me-guidelines-from-cdc
 

Learner1

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If you look at what the contractor does, they look at published literature to draw their conclusions. It may not be that they are shoddy, the problem is there are no evidence based treatments in literature
 

Tally

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If you look at what the contractor does, they look at published literature to draw their conclusions. It may not be that they are shoddy, the problem is there are no evidence based treatments in literature
Yeah, there is no evidence based teatment so why did they recommend CBT and GET?

I don't buy that. IOM had the exact same task, look at literature to draw conclusion and they said it's a physical illness and didn't recommend CBT and GET.
 

Learner1

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Yeah, there is no evidence based teatment so why did they recommend CBT and GET?

I don't buy that. IOM had the exact same task, look at literature to draw conclusion and they said it's a physical illness and didn't recommend CBT and GET.
I signed, too.

IOM did not have the same task. The task here seems to be to evaluate evidence based treatments, of which there really are none, so this is putting the cart before the horse.

Seems previously they looked around and used the copious literature on CBT/GET, which has been debunked.

This task isn't ready for prime time. They should wait until more info from expert clinicians is available.
 
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No matter what this contractor's history:

CDC (govt) + Sole source + quietly hire = History repeats, Immediate Suspicion

i.e. What conclusions is CDC quietly paying this sole contractor to reach? (with $150K of our tax dollars - we're still the cheapest, easiest-to-dupe disease on their lists.) I know 150K isn't much, but CDC knows how that we don't appreciate them trying to pull this type of deal off without being up front transparent to the ME community.

(Just one example, this one relevant specifically to our community):

CDC AND NIH Officials Discussed "Desirable Outcome" of Seeing A Distinct Illness "Evaporate”
http://cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html

Dr. Stephen E. Straus to Dr. Keiji Fukuda:

“I predict that… the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.” “I commend you again on your efforts to forge an international consensus that has scientific merit and is politically acceptable.”

For more historic examples, simply reference your copy of Osler's Web.

(To put it more succintly: I signed☺)