ME PACE Trial

PACE-GATE: An Alternative View On A Study With A Poor Trial Protocol

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    By Bart Stouten in Journal of Health Psychology.   Abstract The controversies surrounding the effectiveness of cognitive behavioural therapy and graded exercise therapy for chronic fatigue syndrome are explained using Cohen’s d effect sizes rather than arbitrary thresholds for ‘success’. This article shows that the treatment effects vanish when switching to objective outcomes. The preference […]

Bias, Misleading Information And Lack Of Respect For Alternative Views Have Distorted Perceptions Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome And Its Treatment

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    By Ellen Goudsmit and Sandra Howes in Journal of Health Psychology.   Abstract The PACE trial is one of the most recent studies evaluating cognitive behavioural therapy and graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome. These interventions are based on a model which assumes that symptoms are perpetuated by factors such as misguided beliefs […]

Missing More: Exercise To Keep Job

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From Missing More. Brett’s experience from Australia illustrates the global impact of UK graded exercise therapy and related research. It also shows the immense pressure that people with ME are under to comply with exercise regimes: When I first was diagnosed with ME, I was told that the illness was psychosomatic and that I had […]

Trial By Error, Continued: My Libelous Blogging On Virology Blog

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  By David Tuller in Virology Blog.   During a recent talk at the annual conference of the British Renal Society, pediatrician and staunch PACE proponent Esther Crawley accused me of libeling her. I wasn’t at her presentation, but her slides were captured and tweeted. Dr. Crawley’s lecture recounted her heroic struggle against the dark […]

Missing More: Graded Exercise Therapy Ruined Me

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    From the Stop Graded Exercise Campaign.   Missing More after graded exercise therapy is a series of posts from the perspective of people with ME for ME Awareness Month (May). If you have a story to share about exercise and ME see this post for instructions about how to contribute. Sometimes we hear people […]

Treating Chronic Fatigue Syndrome With Cognitive Behavioral Therapy And Graded Exercise Therapy: How The PACE Trial Got It Wrong

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  By Harriet Hall in Science Based Medicine.   Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), and the recently-suggested IOM term systemic exertion intolerance disease (SEID), is characterized by long-term fatigue and a host of other symptoms that impair the patient’s ability to function. It sometimes develops after a flu-like illness, but can also […]

How A Study About Chronic Fatigue Syndrome Was Doctored, Adding To Pain And Stigma

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    By Steven Lubet in The Conversation.   The public relies on scientists to report their findings accurately and completely, but that does not always happen. Too often, researchers announce only their most favorable outcomes, while keeping more disappointing results well out of sight. This phenomenon, first identified by the psychologist Robert Rosenthal in […]

Getting It Wrong On Chronic Fatigue Syndrome

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    By Julie Rehmeyer and David Tuller in The New York Times.   What are some of the treatment regimens that sufferers of chronic fatigue syndrome should follow? Many major medical organizations cite two: psychotherapy and a steady increase in exercise. There’s just one problem. The main study that has been cited as proof that […]

Parliamentary Questions Asked By MP Kelvin Hopkins

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  From OMEGA   Kelvin Hopkins, Member of Parliament for Luton North, has addressed some written parliamentary questions about ME/CFS research and treatment recommendations to the Department of Health and Department for Business, Energy and Industrial Strategy.  He asked if the Secretary of State for Business, Energy and Industrial Strategy will request that the Medical […]

Response To “Why We Are Supporting The MEGA Research Project” Action for ME Nov22/2016

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    By James David Chapman   MEGA: I will not support CFS researchers who refuse to discuss CFS research. I do not believe science and “patient engagement” is served when patients’ questions are blocked.  The continued joint silence over Pace gives me no confidence in the MEGA trial proposals. People with M.E (pwme) have […]

You, ME And CBT

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    From the Jamison Writes Blog.   I remember when a doctor of mine suggested I incorporate cognitive behavioral therapy (CBT) and graded exercise therapy (GET) into my treatment plan. She might as well have said, “Hey Jamison, I’d like you to try smoking cigarettes to treat your symptoms. Start slow, maybe a few […]

Reported On BBC Breakfast – Online ME Treatment For Children

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    On the day when the NHS in Bristol are to start a trial on children with ME, it’s important that lessons are learned. A similar trial on adults has recently been debunked and shown to be harmful after the data was proved to be corrupt. To learn more about that, Google ‘The PACE […]

Worse Than The Disease

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    From Undark. After living in Oklahoma for 40 years, Nita and Doug Thatcher retired in 2009 to the Rust Belt city of Lorain, Ohio, a Cleveland suburb that hugs Lake Erie. When Nita needed to find a new primary care doctor, a friend recommended someone from the Cleveland Clinic. Nita knew the institution’s reputation for […]

The Results They Really Didn’t Want You To See: Key ME/CFS Trial Data Released

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    By Conrad Bower in The Canary.   Researchers at Queen Mary University of London (QMUL), have been ordered to release a full data from a controversial ME/CFS (myalgic encephalomyelitis/ chronic fatigue syndrome) study known as the PACE trial. A preliminary analysis of the data reveals a shocking difference to the original published results, […]

Independent Investigation Reveals NICE Approved Treatment Only A Fraction As Effective As Experts Claim It Is.

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  By Jerome Burne in Health Insight UK.   Would any doctor continue to prescribe a drug which they had been told would benefit 20 per cent of patients with a specific illness, once the truth was revealed to be around 7 per cent, only one percent better than no treatment at all? You’d have […]

No ‘Recovery’ In PACE Trial, New Analysis Finds

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    by Vincent Racaniello in Virology Blog.   Last October, Virology Blog posted David Tuller’s 14,000-word investigation of the many flaws of the PACE trial (link to article), which had reported that cognitive behavior therapy and graded exercise therapy could lead to “improvement” and “recovery” from ME/CFS. The first results, on “improvement,” were published […]

PACE Trial Data Released – The Latest News

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        For the story so far……….   By Capricious Lestrange in Disability Depot.   Queen Mary University of London (QMUL) has released the PACE data to a patient who requested it under the Freedom of Information Act, as ordered by a recent tribunal, on the last possible day to lodge an appeal against the […]

UK And Global Petition: It’s Time To Stop Graded Exercise Therapy (GET) Trials For ME/CFS

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    After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS.  If this petition reaches 10,000 signatures from UK citizens, its […]

PACE Study Data Released After 5 Year Fight

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    This week, Queen Mary University of London (QMUL) released data from its controversial PACE study on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), as required by a tribunal decision. The data release came after five years of pressure from patients and scientists who questioned the study’s claim that graded exercise and cognitive behavioral therapy were effective […]

UK Tribunal Orders Release Of Data From Controversial Chronic Fatigue Syndrome Study

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  From Retraction Watch. A tribunal in the UK has rejected an appeal by Queen Mary University of London, who sought to reverse a previous order that they release data from a controversial 2011 paper in The Lancet about chronic fatigue syndrome (CFS). The decision is one in a long series of judgments about the […]

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