The PACE Trial

Trial By Error: An Ill-Informed Article In The Guardian

David Tuller

      By David Tuller, DrPH People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his […]

#MEAction Responds To Attacks On ME Community In The Guardian And Psychology Today

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  By #MEAction.   In the past two weeks, The Guardian UK and Psychology Today US have published articles portraying the myalgic encephalomyelitis (ME) community as an angry, misguided mob using social media to denigrate scientific research. Both articles focus on the criticism that Dr. Michael Sharpe, one of the key authors of the PACE trial and […]

RACGP’s 2015 Guidelines On Graded Exercise Therapy Published In A UK Medical Journal

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  By Laura Beere in Emerge Australia.   Apologies for all the acronyms and brackets in the post below. We’ve tried to make this as clear as possible so that we can keep you informed about a (sadly this time – negative) development that could impact on the treatment and welfare of people with ME/CFS. […]

The £4.2 Million Worth PACE Trial – High Hopes, Deep Fall

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    From #FindME.   Do you trust your GP to give you the right diagnosis and treatment you need whenever you feel ill? Yes, most people do! But what if your GP fails to give an accurate diagnosis and worse, prescribes the wrong therapy? This is exactly what happened in the UK based on […]

Trial By Error: My Latest Letter To Bristol’s Legal Department

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    By David Tuller, DrPH Today I sent the following e-mail to Sue Paterson, director of legal services at Bristol University. I cc-d several other people on the e-mail. ********** Dear Ms Paterson— Earlier this month, I sent you an e-mail to ask, among other questions, when Bristol University plans to finish its investigation […]

David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS

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  By Cort Johnson in Health Rising. David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and writer for the New York Times, the policy journal Health Affairs, and other publications, Tuller became outraged at the long history of neglect and abuse directed toward ME/CFS. His publications […]

Trial By Error: Crowdfunding, Week 2; And More Sharpe And Chalder

David Tuller

    By David Tuller, DrPH As of this post, I have achieved 57% of my goal, with 542 donations and 15 days left to go. I think that’s pretty good! I’m optimistic about getting reasonably close to the amount I’m trying to raise. Folks at Berkeley certainly notice the success of my crowdfunding. It […]

Trial By Error: Professor Sharpe’s Retraction Requests

David Tuller

    By David Tuller, DrPH After this month’s release of the Health Research Authority’s PACE analysis, Professor Michael Sharpe sent e-mails to at least two US publications requesting a retraction or major correction of critical articles. Professor Sharpe’s e-mails accused the writers involved of suggesting that PACE was “fraudulent.” This accusation was not true. In […]

Trial By Error: BMJ Amends Last Week’s PACE Article

David Tuller

    By David Tuller, DrPH.   Last Wednesday, the UK Health Research Authority released a letter reviewing its analysis of the PACE trial. Members and supporters of the GET/CBT ideological brigades have misrepresented the HRA letter as a vindication of the study. On Thursday, BMJ posted an article about the HRA letter by science journalist Nigel Hawkes. The […]

The HRA Report Does Not Exonerate The PACE Trial, It Merely Confirms That Its Research Ethics Approval Was In Order

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  From Not The Science Bit.   Great news. The PACE Trial controversy has been resolved! Oh, wait…er, no it hasn’t. Rather, the spin cycle of eminence-based medicine continues. The UK’s Health Research Authority have released a report on their assessment of the beleaguered PACE Trial, and have concluded that they are happy with it. Cue the usual well-paid, eminent, professorial […]

Trial By Error: My Norwegian Interview

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    By David Tuller, DrPH In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain […]

Trial By Error: Some Good News On Cochrane

David Tuller

  By David Tuller, DrPH. In what can only be characterized as a welcome surprise, Cochrane has rejected the revision of a 2014 review of exercise treatments for chronic fatigue syndrome, stating that the work does not meet the organization’s “quality standards.” Cochrane revealed the decision late Friday in a statement appended to the review, which itself […]

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 […]

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