PACE Trial

Trial By Error: A King’s College London Press Release Hides The Bad News

NLP CBT

  By David Tuller, DrPH In teaching courses on covering public health and medical issues, I have often highlighted how university press releases about studies can read like efforts at obfuscating problematic findings rather than providing an accurate account of research. A recent press release from King’s College London, about a high-profile study published by Lancet […]

Return On Investment II: David Tuller

David Tuller

By Jennie Spotila in Occupy M.E.   Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also posted on Virology blog) details his research, writing and publications during the last year. […]

Trial By Error: My Six-Month Review

David Tuller

    By David Tuller, DrPH So it’s time again to review my work and figure out what I’ve been doing. My crowdfunding from last April has been covering my half-time position at Berkeley since July 1, so December 31 marks the end of the first six months. The Berkeley fiscal year ends June 30th, […]

Trial By Error: Some Thoughts About NICE

David Tuller

  By David Tuller, DrPH. The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when […]

Multidisciplinary Rehabilitation Treatment Is Not Effective For Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Review Of The FatiGo Trial

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  By Mark Vink and Alexandra Vink-Niese in Health Psychology Open. Abstract The FatiGo trial concluded that multidisciplinary rehabilitation treatment is more effective for chronic fatigue syndrome/myalgic encephalomyelitis in the long term than cognitive behaviour therapy and that multidisciplinary rehabilitation treatment is more cost-effective for fatigue and cognitive behaviour therapy for quality of life. However, FatiGo suffered from a […]

Trial By Error: The CDC’s Update For Healthcare Providers

David Tuller

    By David Tuller, DrPH.   Last summer, the US Centers for Disease Control removed graded exercise therapy and cognitive behavior therapy from its website as recommendations for treatment of the illness it was by then calling ME/CFS. Its stated explanation for the change–that readers had misunderstood the recommendations–was nonsense. Readers understood all too well what […]

Trial By Error: Yet Another Appeal To The Lancet, With More On Board

David Tuller

  By David Tuller, DrPH.   Last month, Professor Racaniello sent Lancet editor Richard Horton an open letter about the PACE trial signed by 94 scientists, clinicians, academics and other experts. The letter, a follow-up from one sent in 2016, cited the study’s “unacceptable methodological lapses” and called for a fully independent investigation. Since Dr Horton has not […]

David Tuller And The (S)PACE Cake Eaters

David Tuller

    By Anil van der Zee.   In 2015 David Tuller, DrPH, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health at Berkeley University started writing 3 very detailed blogs about the flaws of the now infamous PACE-trial. The patient community has been advocating for years, if […]

Trial By Error: The Crawley Chronicles, Continued….

David Tuller

  By David Tuller, DrPH.   Update: About 20 minutes after posting this blog, I received the following communication from Ms. Paterson: Dear Dr Tuller Thank you for your email of 22 November. If by a ‘cease and desist’ letter you mean a letter threatening legal action if the recipient does not stop a specified […]

Trial By Error: My Brief Encounter With Professor Crawley

David Tuller

  By David Tuller, DrPH.   At noon last Friday, at the University of Exeter’s Mood Disorders Centre, Professor Esther Crawley gave a talk called “What is new in paediatric CFS/ME research.” When I saw a notice about the event the day before, I felt it might be my one chance to ask her directly […]

Trial By Error: The NICE “Topic Expert”

David Tuller

    By David Tuller, DrPH.   My first recent freedom of information request to the National Institute for Health and Care Excellence (NICE) was for information about the experts consulted in the current process of reviewing CG53, the 2007 guidance for the illness the agency calls chronic fatigue syndrome/myalgic encephalomyelitis. In its response, the agency explained […]

Why Are Doctors And Patients Still At War Over M.E.? How The Best Treatment For The Debilitating Condition Is One Of The Most Bitterly Contested Areas In Medicine

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  By Jerome Burne For The Daily Mail.   Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. The condition first reached mainstream consciousness in the Eighties following […]

Angry Scientists Throw Insults At Each Other Over The Results Of A £5 Million Taxpayer-Funded Study Into Chronic Fatigue Syndrome

Coyne

    By Stephen Matthews in Mail Online.   Angry scientists are throwing cheap insults at each other regarding the ‘flawed’ results of a landmark £5 million British study on chronic fatigue syndrome. One medical journal dedicated its entire August edition to ripping apart the ‘unreliable’ trial, which was funded by taxpayers. In response, three […]

The Making Of The PACE Scandal

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    From Centre for Welfare Reform.   A Special Issue of the Journal of Health Psychology on the PACE Trial, is to be published and freely available online on Monday 31 July 2017. It marks a special contribution of the Journal of Health Psychology to the literature concerning interventions to manage chronic  health problems. The […]

On Your Marks GETSET: Don’t Go – Major Graded Exercise ME/CFS Trial Underwhelms (Again)

Cort_Johnson

    By Cort Johnson in Health Rising.   The Lancet — one of the most highly regarded journals in the world — is back on the chronic fatigue syndrome (ME/CFS) community’s front page. That’s probably enough to either elicit curses from ME/CFS patients or to produce a strong desire to hide under one’s bed. […]

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

Nervous System

    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 […]

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 […]

The PACE Trial Invalidates The Use Of CBT And GET ME/CFS: A Review

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  By Mark Vink in the Journal of Neurology and Neurobiology. Abstract The main findings reported in the PACE trial were that cognitive behavioral therapy (CBT) and graded exercise therapy (GET) were moderately effective treatments for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and fear avoidance beliefs constituted the strongest mediator of both therapies. These findings have […]

New CBT And GET Threat For Australian CFS Patients

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  By Sasha Nimmo in Shout Out About ME.   Australian CFS researcher, Prof Andrew Lloyd last year explained he was working on an online program of graded exercise therapy (GET) and cognitive behavior therapy (CBT) at the University of NSW’s Fatigue Clinic. Prof Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably […]

Dr. David Tuller Discusses The Flaws Of The PACE Trial – Video

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I wanted to let you know that I’ve added a couple of videos to our tab at the top of the site.  One is of Dr David Tuller, filmed in Amsterdam on Sunday 28th of Feb 2016 during the screening of Forgotten Plague, organised by Dutch severe ME-patient Anil van der Zee and the Dutch ME/cvs Vereniging. […]

The PACE Trials: A £6 Million Failure

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  From the Slightly Alive Blog by Mary Schweitzer.   There is nothing complicated about the PACE trials – or at least, there should not have been. Patients were selected to participate in a trial of cognitive behaviour therapy targeted to their “inappropriate illness beliefs” and a course of “graded exercise therapy” to get them back […]

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