The PACE Trial

Trial By Error: An Australian Exchange With Professor Sharpe

David Tuller

  By David Tuller, DrPH. Below is an exchange between members of the Australian ME/CFS community and Professor Michael Sharpe. The open letter from patients and advocates was prompted by a tweet this week from Professor Sharpe that many considered offensive. He has since deleted it. This post includes the initial tweet as well as […]

Trial By Error: The Cochrane Controversy

David Tuller

  By David Tuller, DrPH.   Cochrane–formerly called the Cochrane Collaboration–is respected worldwide for its systematic reviews of medical treatments. These reviews are often cited as the definitive source of information about treatment efficacy and safety. In taking on the thankless task of assessing the data on commonly used interventions, Cochrane performs an invaluable public […]

Trial By Error: The BPS Brigades Score Another Own Goal

David Tuller

  By David Tuller, DrPH.   Not long ago, Sir Simon scored an own goal by enticing a childhood buddy to enter the PACE debate. That buddy, attorney and social commentator Mike Godwin, soon pronounced the trial—which Sir Simon had called “a thing of beauty”–to be “so profoundly flawed that it cannot be trusted.” Sir Simon tweeted […]

Trial By Error: Mayo Still Champions GET

David Tuller

  By David Tuller, DrPH.   Last week I admonished the US Centers for Disease Control for including fuzzy language about exercise in its new package of “information for healthcare providers.” The way the Mayo Clinic deals with the illness it calls chronic fatigue syndrome is an excellent illustration of why it is so important for the […]

Trial By Error: Professor Sharpe’s Intemperate Remarks – For Whom Is He Speaking ?

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  By Steven Lubet in Virology Blog.   Steven Lubet is the Williams Memorial Professor at Northwestern University Pritzker School of Law, where he specializes in professional responsibility and ethics. Let’s assume that everyone on the PACE team, and all of their colleagues in the biopsychosocial school, always acted in complete good faith. Let’s agree […]

Trial By Error: Sir Simon Scores An Own Goal

David Tuller

  By David Tuller, DrPH.   From the start, one of my strategies for this PACE-debunking project was to draw in outside experts–people with no ax to grind and no pre-conceived notions about the trial and its methodology–and encourage them to scrutinize the matter. It was telling that many well-regarded scientists and researchers were willing […]

Trial By Error: My 2011 NY Times Exchange With the PACE PIs

David Tuller

  By David Tuller, DrPH.   When the PACE trial was published in early 2011, my New York Times editor sent it to me, along with the press release. As a non-staff contributor to the Times, I had started covering the debate over the mouse retrovirus hypothesis and science, but I’d heard nothing about anything called PACE or […]

Trial By Error: More On The CDC; Reader’s Digest; And BBC’s Newsbeat

David Tuller

    By David Tuller, DrPH.   It’s been almost a year since the CDC removed its recommendations for GET and CBT as treatments for ME/CFS (or CFS, or ME, or CFS/ME, or even SEID or whatever else one calls this illness or cluster of illnesses). When questioned about the decision, the agency explained that people had […]

Trial By Error: Professor Michael Sharpe’s Gaffe On Australian Radio

David Tuller

  By David Tuller, DrPH.   It’s Thursday morning in Australia, and I’ve just arrived in Brisbane after a red-eye from Perth, with a week left to go on my tour Down Under. Of course I’m backed up on things I need to write about, and hope to have some down time soon to pull […]

Trial By Error: Two Interview Podcasts, and “Conflicts of Interest”

David Tuller

  By David Tuller, DrPH.   For those not yet sick of my voice, here are two more chances to hear me reiterate variations of my message: On Monday morning, I was interviewed in Perth for the radio show Mornings with Gareth Parker, on the 6PR882 Talk Radio network. (Never mind that the description in the link […]

Trial By Error: A Post About Andrew Lloyd

David Tuller

  By David Tuller, DrPH.   I know folks are eager to hear more about what I’m learning in Australia. I’m finding it challenging to have meetings, prepare for talks, conduct interviews, promote the crowdfunding, keep up with my BMJ Open correspondence, and also write posts about what’s happening here. It will take a bit of time […]

Trial By Error: A Q-and-A With Scottish MP Carol Monaghan

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By David Tuller, DrPH. On February 20th, Carol Monaghan, a member of Parliament from the Scottish National Party, led an extraordinary debate in the House of Commons about the ethical and methodological failings of the PACE trial. The debate included discussion of the debilitating nature of the illness, the conflicts of interests of the PACE authors, the […]

Trial By Error: My Time In Canberra

David Tuller

  By David Tuller, DrPH.   I’m in Sydney now, but last week I had a busy few days in Canberra. My hosts were the wonderful duo of Libby Steeper and Eleanor Flowers. They treated me like royalty and shepherded me around town to the various appointments they and others had organized. As a representative […]

ME Sufferers Welcome ‘Unreliable’ Stamp On Exercise Report

Exercise

  From The Herald.   An Oxfordshire woman who has spent most of the past 28 years in bed has welcomed the conclusion that a controversial study recommending she exercise more was ‘unreliable’. ME sufferer Zoë Williams was among hundreds who celebrated the new report finding that the conclusions of the widely-criticised PACE study may […]

PACE Trial’s Findings Fundamentally Challenged By A New Study

Research

    By Simon McGrath in ME/CFS Research Review.   In a nutshell: Analysing PACE the way the authors originally promised to do showed that CBT and GET didn’t do much to improve self-reported physical function and fatigue and did not lead to recovery. Even the very limited self-reported gains in this unblinded trial are […]

The Mainstream Medical Community Just Declared War On People Living With ME

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  By Steve Topple in The Canary.   The publication of a study into what an MP called one of the “biggest medical scandals of the 21st century” has sparked a war of words between areas of the medical and science communities. Caught in the crossfire are between 17 and 24 million disabled people worldwide, on whom critics of […]

Rethinking The Treatment Of Chronic Fatigue Syndrome – A Reanalysis And Evaluation Of Findings From A Recent Major Trial Of Graded Exercise And CBT

BMC

    By Carolyn E. Wilshire, Tom Kindlon, Robert Courtney, Alem Matthees, David Tuller,Keith Geraghty and Bruce Levin in BMC Psychology.   Abstract Background The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. […]

Trial By Error: Checking In From Melbourne And Canberra…

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  By David Tuller, DrPH.   So I’ve been in Australia for a week. In Melbourne on Friday, I was happy to spend a couple of hours with Emerge Australia, the local ME/CFS advocacy group. We had video glitches so there is not a continuous tape of the discussion, but here’s a link to at […]

Trial By Error: The Australian Situation, And Professor Crawley’s New Position

David Tuller

  By David Tuller, DrPH.   So I arrived in Melbourne on Wednesday afternoon. I’ll be in Australia for several weeks for meetings, interviews and general information-gathering. I’ll post occasionally, but some of the information might be for future blogs and stories. I’ve conducted a Q-and-A about the general situation in the country with Penelope […]

Trial By Error: News About My Plans

David Tuller

  By David Tuller, DrPH.   So I’ve been asked about my plans after June 30th, which is the end of the period covered by last year’s crowdfunding campaign. There’s been significant progress since I launched that effort. Among other developments, the CDC dropped its recommendations for CBT and GET, NICE decided to withdraw its preliminary […]

Westminster Hall Debate On The PACE Trial And Its Effects On People With ME: An Analysis Of The Response From Caroline Dinenage MP, Minster Of State For Care

Parliament

  By Robert Saunders in #MEAction.   On the 20 February 2018 a debate was held in the Palace of Westminster (UK) on the PACE trial and its effects on people with ME. (See #MEAction summary.) Carol Monaghan MP, who secured the debate, raised many valid and important concerns, as did several MPs who intervened during […]

PACE Trial: People With ME

Parliament

  From The House of Commons Hansard. [Mr Philip Hollobone in the Chair]  11.00 am Carol Monaghan (Glasgow North West) (SNP) I  beg to move, That this House has considered the PACE trial and its effect on people with ME. It is a pleasure to serve under your chairmanship, Mr Hollobone. “The doctor doesn’t see me crawl […]

Trial By Error: A Letter To BMJ Open

David Tuller

  By David Tuller, DrPH.   Three weeks ago, Professor Racaniello e-mailed a letter of concern to Archives of Disease in Childhood about its recent study of the Lightning Process as a treatment for ME/CFS in kids. The journal’s editor, Dr. Nick Brown, answered within an hour, assuring Professor Racaniello that he took the matter seriously and that the […]

The Failure Of Clinical Guidance For People With ME

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  From #MEAction.   ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for people with Myalgic Encephalomyelitis.  The patient community has long reported these treatments to be ineffective and harmful, and, yet, health societies and […]

Rethinking The Treatment Of Chronic Fatigue Syndrome—A Reanalysis And Evaluation Of Findings From A Recent Major Trial Of Graded Exercise And CBT

Analysing

    By Carolyn Wilshire et al in ResearchGate.   Abstract BACKGROUND: The PACE trial was a well-powered randomised trial designed to examine the efficacy of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for chronic fatigue syndrome. Reports concluded that both treatments were moderately effective, each leading to recovery in over a fifth of patients. […]

Trial By Error: Letter To British Journal Of Sports Medicine From CPET Experts

David Tuller

  By David Tuller, DrPH.   Last October, the British Journal of Sports Medicine published a short paper that was essentially a summary of Cochrane’s systematic review of graded exercise for chronic fatigue syndrome (as Cochrane calls the illness). This systematic review is problematic for a number of reasons—not least of which is that it includes the debunked PACE […]

Trial By Error: My Six-Month Review

David Tuller

  By David Tuller, DrPH.   This month is the start of the second half of my one-year crowdfunding commitment to keep reporting on ME/CFS, so I figured I should review what I’ve done so far, what I still hope to do, and what changes have taken place during the last six months. So, here […]

A Letter To Professor Mark Baker – Centre For Guidelines Director, National Institute For Health And Care Excellence

invest

  From Invest in ME Research.   In July 2017 Invest in ME Research responded to the NICE 10 year surveillance (2017) – Chronic fatigue syndrome/myalgic encephalomyelitis. Recently, whilst preparing for the planned Stakeholders’ Workshop (16 January 2018) to review the NICE guidelines for ME it has, in our opinion, been necessary to make one […]

Trial By Error: The School Absence Study, Revisited

David Tuller

  By David Tuller, DrPH.   This post is about a serious issue–ethical approval for research studies involving children. It is also about how powerful institutions, like leading medical journals, respond to concerns. But the story is really too long and complicated. I recommend it only for those following things pretty closely or who for […]

Trial By Error: My Questions For The Science Media Centre

David Tuller

  By David Tuller, DrPH.   On September 20, 2017, a BMJ Publishing Group journal, Archives of Disease in Childhood published the SMILE trial. This trial investigated an intervention called the Lightning Process as a treatment for kids with CFS/ME (as the study called the disease). The lead investigator was Professor Esther Crawley, the University of Bristol pediatrician and a well-known […]

QMUL “Studying” PACE Data-Release Ruling

PACE

    By Alex Anderssen in #MEAction.   Queen Mary University of London (QMUL) have issued a statement in response to Tuesday’s tribunal ruling that they must release anonymised PACE trial data to a patient who requested it under the Freedom of Information Act. The data would allow the calculation of main outcome and recovery figures using analyses that […]

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

PACE

  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 […]

An Open Letter To Dr. Simon Wessely, Defender Of The PACE Study

Steven Lubet

    From The Facaulty Lounge.   A Letter From Steven Lubet.   Dear Dr. Wessely: I was surprised to see the president of the Royal College of Psychiatrists post a comment on a U.S. law blog.  I suppose this means that I have gotten your attention in the discussion of Chronic Fatigue Syndrome (ME/CFS), […]

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