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asjeOffline
Onderwerp: petitie CDC  BerichtGeplaatst: 28 Aug 2018 - 19:08
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Het CDC wil met dezelfde 'experts' als voorheen, die van CGT/GET, de nieuwe richtlijn gaan vaststellen.

Teken allen!


Sign this #MEAction petition and stop the CDC from making ME treatment guidelines without our input!
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Take urgent action to stop the CDC from repeating a terrible mistake.

Dear ...,

We need your help.

The US Centers for Disease Control (CDC) is updating its ME treatment guidelines. As part of this work, it is attempting to quietly hire the same independent contractor that previously recommended graded exercise therapy (GET) and cognitive behavioral therapy (CBT) for the treatment of ME.

We cannot let history repeat itself: Sign the #MEAction petition to stop the CDC from repeating a terrible mistake. Then SHARE on social media and with friends and loved ones. We must act quickly and respond by Friday, Aug. 31st. That's this Friday!

We encourage allies around the world to fight this contract by signing the petition, no matter where you live.

SIGN the petition
Or read on to learn more
The CDC is attempting to quietly hire the Pacific Northwest Evidence-based Practice Center (EPC) 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.

The EPC’s 2014 report included recommendations for graded exercise therapy (GET) and cognitive behavioral therapy (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 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 any future developers of treatment guidelines for ME. This is not a contractor whose expertise or quality of work the CDC should trust.

We cannot let history repeat itself. We have to stop this right now. The CDC is trying to rush the EPC contract through with minimum time for us to respond. We only have until August 31 - THIS Friday - to respond.


Sign the petition to demand that the CDC not issue this contract, put the project on hold, and meet with #MEAction immediately to discuss implementing a transparent and collaborative process for creating future guidelines that engages advocates and community representatives, and includes experienced ME researchers and expert practitioners.

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.

Sign the Petition Now!
Let's make NOISE the CDC can't ignore.

In Solidarity,

Ben HsuBorger
Community and Campaigns Director

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Life smells...
 
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Zuiderzon
Onderwerp:   BerichtGeplaatst: 28 Aug 2018 - 21:52
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Link naar petitie (denk ik):
https://my.meaction.net/petitions/demand-expert-input-community-consultation-on-new-me-guidelines-from-cdc

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asjeOffline
Onderwerp:   BerichtGeplaatst: 28 Aug 2018 - 22:09
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Oeps, vergeten. Link klopt en thanks!

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Onderwerp:   BerichtGeplaatst: 30 Aug 2018 - 20:19
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asjeOffline
Onderwerp:   BerichtGeplaatst: 30 Aug 2018 - 22:09
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Het CDC gaf nauwelijks ruimte om te reageren, ER KAN ALLEEN NOG TOT MORGEN 00.00 GETEKEND WORDEN!

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Onderwerp:   BerichtGeplaatst: 31 Aug 2018 - 09:07
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