• 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).
    10,486 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.
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  • Misleading PACE claims should be retracted
    The UK’s £5 million PACE trial has been hugely influential in bolstering the view that CFS (chronic fatigue syndrome) patients can recover if they gradually increase their activity, despite widespread reports of harm [5]. This view informs how patients around the world are treated in the media, in medical practice and by society. It is crucial that misleading claims of recovery do not stand.

 "All the issues with the trial are extremely worrying, making interpretation of the clinical significance of the findings more or less impossible.” – Emeritus Professor Jonathan Edwards of University College London 

Claims have been made in The Lancet and Psychological Medicine that a substantial proportion of CFS patients in the PACE trial recovered after a course of cognitive behavioural therapy (CBT) or graded exercise therapy (GET). However, the claims are based on criteria that were revised after the study was already underway. These new criteria included “normal ranges” for fatigue and physical function that are so broad that patients could at the end of the trial have physical function similar to someone with congestive heart failure — and yet be classed as “recovered”. 

Being as disabled as patients with congestive heart failure [6] simply isn’t good enough to count as recovery of physical function for patients with chronic fatigue syndrome. READ MORE: http://www.meaction.net/background-to-the-petition/ [1] http://bit.ly/1Rexu6L [2] http://bit.ly/1PUEyHm [3] http://1.usa.gov/1iioqBz   [4] http://bit.ly/1PRcpBK [5] http://bit.ly/1Mtu8yM [6] http://1.usa.gov/1iioXDC Editor's note: We use here the term "Chronic Fatigue Syndrome" (CFS) in line with the PACE trial authors' terminology and use of the Oxford Criteria.
    12,377 of 15,000 Signatures
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  • Save the Gottfries Clinic
    The Gottfries clinic is the leading ME/CFS and Fibromyalgia clinic in Sweden. It both treats patients and conducts biomedical research. Politicians in Gothenburg, Sweden have now decided not to renew the contract with the clinic when it expires on 30 November 2016. Instead, it plans to announce a new procurement for the treatment of so-called MUS (medically unexplained symptoms). Their view is that ME/CFS and Fibromyalgia are not separate diagnoses but belongs to a group of illnesses called functional somatic syndromes, i.e., psychosomatic disorders. The premise is that these should be treated only with various forms of psychotherapy. The patients will have no biomedical treatment. This is a scandalous decision which is based on an ignorance that is surprising. The decision was made by a committee that completely ignored the last ten years of research. There is now good evidence that both ME/CFS and Fibromyalgia are chronic, somatic diseases that have a devastating effect on patients' lives. To refuse to treat these patients medically is the equivalent of refusing to give Alzheimer patients other treatments than CBT, or to remove all MS patients' medications and just give them antidepressants. It is not compatible with Swedish law which states that everyone should be provided good health on equal terms.
    3,154 of 4,000 Signatures
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