ME PACE Trial

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 […]

Do Graded Activity Therapies Cause Harm In Chronic Fatigue Syndrome ?

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  By Tom Kindlon in Journal of Health Psychology.   Abstract Reporting of harms was much better in the PACE (Pacing, graded Activity, and Cognitive behavioural therapy: a randomised Evaluation) trial than earlier chronic fatigue syndrome trials of graded exercise therapy and cognitive behavioural therapy. However, some issues remain. The trial’s poor results on objective measures […]

GET Paper Withdrawal Shocks CBT/GET Proponents – Emboldens ME/CFS Advocates

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  By Cort Johnson in Health Rising. Our mission is to promote evidence-informed health decision-making by producing high-quality, relevant, accessible systematic reviews and other synthesized research evidence. Our work is internationally recognized as the benchmark for high-quality information about the effectiveness of health care. Cochrane  The Cochrane Reviews are the gold standard – highly respected and […]

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 […]

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 […]

The Triumph of Eminence-Based Medicine

Research Study

  By Brian Hughes in Not The Science Bit.   Lines are drawn A quarter of a million Britons have been diagnosed with myalgic encephalomyelitis (ME), the condition also known as chronic fatigue syndrome (CFS). ME/CFS is a severe debilitating illness that renders patients either temporarily or perennially immobile. Sufferers will have often led very active lives […]

Carol Monaghan Continues Fight For Parliamentary Debate On ME

Carol Monaghan SNP

This is the text of an email I’ve sent to York MPs to gain support for a Parliamentary Debate on ME. We are entering an extremely crucial period where NICE are reviewing their guidelines to potentially remove the harmful Graded Exercise Therapy (GET) as a recommended treatment for this illness. They are however loading their […]

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

NICE logo

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 […]

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