ME PACE Trial

A Continuing Saga Of Ineptitude

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From Invest In ME Research.   Comment After failing ME patients for so many years with their guidelines, and despite being taken to a judicial review (by patients), and despite the NICE guidelines director seeming to admit that the current guidelines were unfit for purpose, NICE were able to begin afresh and really concentrate on […]

Guidelines For ME/CFS Outdated And Dangerous

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By Felicity Nelson in Medical Republic.   NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020. The 2007 NICE guidelines currently recommend the use of graded exercise therapy (GET), a treatment that only helps a minority of patients and can cause significant harm in some […]

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: FITNET-NHS Recruitment Ad Promotes “Recovery”

David Tuller

  By David Tuller, DrPH.   A British medical education company has recently disseminated a recruitment ad for a high-profile pediatric study of treatment for what it calls CFS/ME. The recruitment ad’s headline describes the intervention being investigated as “effective,” without caveat or reservation. (Full headline: “Chronic fatigue syndrome (CFS/ME): effective home treatment for teenagers”) […]

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 […]

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

Doctor

  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: 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 […]

Doctors ‘Do More Harm Than Good’ Sending ME Patients To Gym

Exercise

  By Lisa Smyth in The Belfast Telegraph.   A charity that supports people with Myalgic Encephalomyelitis (ME) has said patients in Northern Ireland are being failed by a shocking lack of understanding about the condition. People with ME can suffer a range of symptoms, from headaches and extreme sensitivity to light and sound, to […]

‘Potentially Harmful And Old-Fashioned’ Chronic Fatigue Treatments Under Review

Australia

  By Andy Park in ABC News Australia.   Treatment recommended to Chronic Fatigue Syndrome (CFS) patients can be potentially harmful and is old-fashioned, according to a patient group who are asking a new government advisory committee to research potential cures, not counselling or exercise relief. The predominant treatment for many of Australia’s 200,000 sufferers […]

CBT & GET – Parliamentary Question

Mar-talks

  From ME Research UK.   The Countess of Mar, Chair of the Forward-ME Group and Patron of ME Research UK has raised a number of points with the Department of Health and Social Care concerning how those affected by ME/CFS can report adverse effects experienced due to participation in Graded Exercise Therapy and/or Cognative […]

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 […]

A Morass Of MUS

DessertSpoons

From the Spoonseeker.com Blog.   As you are probably aware, here in the UK, NICE are currently engaged in the lengthy process of revising their guidelines for ME/CFS. The current guidelines recommend the use of GET (graded exercise therapy) and associated CBT (cognitive behavioural therapy), the latter being used in this case to persuade patients that GET is […]

Parliamentary Debate On ME Research And Treatment

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  From Invest In ME Research.   A parliamentary debate on the research and treatment of Myalgic Encephalomyelitis (ME) secured by Carol Monaghan MP for Glasgow North West was held on Thursday 21 June 2018 at 1.30-4.30pm in Westminster Hall. The request for debate was raised with cross-party support at a Back Bench Committee Meeting […]

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: My Australian Tour, Continued

David Tuller

    By David Tuller, DrPH.   Last week, I spent three days in Hobart, on the island of Tasmania. Besides strolling around looking for cafes where I could drink decent coffee and write, my main work-related activity was giving a talk at Menzies Institute for Medical Research, part of the University of Tasmania. About 40 people attended, […]

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: The Dutch Review; My Trip; Bristol’s Silence

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  By David Tuller, DrPH.   And now some potentially good news from the Netherlands. Two years ago, the Dutch parliament asked the Health Council—an independent scientific advisory body—to review the state of evidence related to the illness generally called chronic fatigue syndrome in the Netherlands. That review was to include the evidence for rehabilitative […]

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 […]

Stanford Exercise Study Shows Different Immune Response In Chronic Fatigue Syndrome (ME/CFS)

Exercise

  By Cort Johnson in Health Rising.   It’s always good to see an exercise test in chronic fatigue syndrome (ME/CFS). It’s harder on the patients – kudos to them for participating in the study –  but study after study has shown that exercise allows researchers to dig deeper into what’s going on. Dr. Montoya […]

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 […]

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