stop the CDC from making ME treatment guidelines without our input

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 GivePain,

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     Sign the Petition Now!

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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6 Responses

  1. Thanks for posting steve

  2. These petitions cannot make the government do anything. Even is they later review a decision and change it. As the article above states. That does not mean anything changes.

    • No it’s not going to necessarily mean anything changes, however if we do absolutely nothing you KNOW nothing’s going to change.

  3. It seems to me that an evidence based decision can now be made in reference to the forced tapering of the dosage of opiate/opioid medication recommendation being driven by the……. DEA. It seems that the CDC “guideline” was supposed to be just that. A “guideline”, not an enforced, hard ass law that forces established pain management patients armed with the doctors documentation of “how life is going” with adequate pain management using opiate or opioid medication. It seems the DEA has FORCED pain management doctors both the specialist and General MD’s to forcibly reduce all patients to reduce their opiate/opioid medication to no more than 90/100 milligrams of “morphine equivalent” per day for ALL pain management issues. How do I know DEA is behind Forced reduction of opiate medication to no more than 100 milligrams of “morphine equivalent” per day? My doctor told me he HAD to attend a meeting just prior to the start of 2017 held by DEA representatives with many other doctors and was told to “under NO circumstances” are ANY physicians that hold a DEA number to prescribe in excess of 90 milligrams of “morphine equivalent” as per the asinine medication “conversion chart” to any patient even if the patient was negatively affected with not being able to remain employed, if it caused worsened health of the patient, regardless of the cause of pain generation, or ANY other negative circumstance it may cost the patient…..even self termination. Fairly harsh instructions. The medication “conversion chart” which supposedly converts all opiate/opioid medication to a “morphine equivalent” is flawed from the start. I am no “expert’ but, I have followed many very credible doctors who have stated that this “conversion chart” is absolutely impossible to accurately create. The forced reduction of medication has, is, and will continue to insight a feeling of hopelessness, frustration, and cause people that have done VERY well with an adequate dosage of opiate/opioid medication for years and decades. This is a fight that patients with years and decades of documented use of opiate/opioid medication should not even be having to fight. In NC, if I am willing to pay about $15.00 per day I can drive about 10 minutes from my home to a “methadone clinic” where I must state and then sign a document stating that I am a hopeless drug addict, be drug screened to be able to be “prescribed” and get a dosage of liquid methadone on sight, then return daily to receive a dosage which will be increased until I state that I am receiving sufficient medication that is managing my “condition” adequately. How do I know this? I now have several friends that chose the clinic to keep their jobs and to simply survive the pain to be able to continue in many cases simply to meet recurring debt, raise and feed their children etc. In short it was about the last option in life to sufficiently manage severe lifetime, continuous pain generation from illness or injury. If methadone is so “powerful”, strong, and unsafe then why……are their methadone clinics across NC? Across the nation? Many patients with intractable pain management issues have chose to go to a clinic daily rather than to turn to an illicit substance or become a blithering drunk from alcohol use. Not many avenues to travel if you are a person that WILL experience severe pain continuously, for the rest of our lives. I REALLY have lost all faith in the medical system and healthcare now that the DEA is in control of our health IF we suffer with continuous, severe pain. from disease, injury, and screwed up surgery from a surgeon that may be suffering from a hangover from the night before my surgery or a less than competent surgeon. DEA needs to get out of the dosage side of medical treatment for pain management patients and when ALL alternative therapy for sufficient pain management has already been tried. It seems that DEA needs be more concerned with fentanyl which is not the same grade fentanyl used on humans, heroin, and other substances entering this country as well as “meth” cooked up right here IN the USA. The “pill mills” operating have surely been found out and proper action taken leaving VERY credible physicians now using their due diligence in addressing our pain management issues. I do not hold the CDC at fault for the crisis being caused in the lives of some 10 million pain management patient lives. The more I attempt to advocate for reasonable pain management therapy and the accepted practice for many decades here in the US to prescribe and use opiate/opioid medication for non cancer pain management patients, the more it becomes evident that the DEA agents and their superiors know more than my educated pain management physician. I am sure that I personally will never “get past” this far from adequate pain management therapy now that DEA is practicing medicine without acceptable credentials earned by the long process of education required to receive a license to practice. The overdose rate in America might actually decline IF DEA would or could reduce the entrance of very dangerous and illicit substances entering our country and leave practicing medicine……. to our physicians.

  4. I tried to sign, but itsi asking for a POST CODE. WHAT IS THAT?

    • I filled it out quite a while ago, so don’t remember but…could they be asking for a zip code, in an incoherent way? You’d think the government would know it’s own jargon, but then again ya never know.

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