• Per Fink Should Not Spread Lies about ME at Columbia University!
    Per Fink's approach has been responsible for children being removed from their homes because he believes ME is psychosomatic. Per Fink’s clinic claims to treat ME but no patient has ever received an ME diagnosis there. So far, 55 patient complaints about his practices at the clinic have been sent to the Board of Patient Safety in Denmark. Per Fink WRONGLY claims: - ME is a form of BDS because the symptoms of ME fit into his overly-broad BDS concept. - He can cure ME patients with Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) – he uses the flawed PACE trial as evidence. - His website claims that no patients have been harmed by his treatments. - ME is caused by incorrect illness beliefs, deconditioning and stress. There is no scientific evidence for any of this. And yet, in less than a month, on October 20, Per Fink will be speaking at Columbia University. The Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health received part of a $9.6 million dollar multi-center grant over five years to study the biology of ME. How can a university that accepts grants to study ME also host a speaker that propagates the idea that ME is psychosomatic? Please sign this petition to demand that the conference director, Dr. Alla Landa, uninvite Per Fink from the Psychosomatic Conference at Columbia University. UPDATE (10/08/18): We've updated the language in the above paragraph about the Center for Infection and Immunity (CII) to clarify that CII is not hosting the event nor do they support it. They study the biomedical reality of ME. This petition is calling on the University to disinvite Per Fink, not CII. Also CII only received part of the $9.6M multi-center grant (since they are one of several centers funded by this grant).
    10,436 of 15,000 Signatures
  • Don’t Hire Shoddy Contractor: ME Treatment Guidelines Need Community, Expert Input!
    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.
    8,320 of 9,000 Signatures
    Created by #MEAction