PACE Trial’s Findings Fundamentally Challenged By A New Study


    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


  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


    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…


  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


  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)


  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


  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 […]

Trial By Error: Our Exchange Of Views With BMJ Open

David Tuller

  By David Tuller, DrPH   Last week, Professor Racaniello e-mailed a letter of concern signed by more than a dozen experts to Dr. Trish Groves, editor-in-chief of BMJ Open. The letter involved Professor Esther Crawley’s school absence study, which the journal published in 2011. As I’d documented in a post last year, the study exempted itself from ethical […]

PACE Trial: People With ME


  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 […]

NICE Announces Next Steps In Updating Its Guideline On ME/CFS


From   A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The workshop was held so that stakeholders, including patient groups for people with ME/CFS and their carers, could help NICE identify at […]

ME Gets A Mention On BBC Radio Scotland – Listen Here…..


  From BBC Radio Scotland.   A piece on ME on BBC Radio Scotland on 14 Feb worth a listen.  It starts around the 36 minute mark.   Please let others know where to find it !   To listen in, click on the link below:   Link to ME Broadcast

ME Being Discussed On BBC Radio Scotland On 14 February


  Tomorrow, 14th February, at 12 noon, BBC Radio Scotland’s John Beattie programme will be interviewing several people about issues around ME. Those being interviewed we have been told, include: – MP Carol Monaghan – who has secured next week’s Parliament debate on the Pace Trial – Janet Sylvester – organiser of the recent Scottish […]

The Failure Of Clinical Guidance For People With ME


  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 […]

Letters To Professor Mark Baker At NICE


  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 click here This pdf is an easier format to read is here. Recently, whilst preparing for the planned Stakeholders’ Workshop (16 January 2018) to review the NICE guidelines for ME […]

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


    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 […]

An Offer You Can’t Refuse

NICE logo

From the mrspoonseeker Blog.   In the previous post about the NICE Guidelines revision, it was reported that Prof Mark Baker of NICE had raised the issue of the right of patients to refuse treatment, in this case with CBT and GET in mind. Steve, who frequently contributes to this blog, left the following response in […]

The NICE Guidelines – Starting Again ?

NICE logo

From the mrspoonseeker blog.   There was some encouraging feedback from the recent NICE ME/CFS Guidelines Stakeholder meeting, an early milestone in the long process of revising the guidelines. But was such encouragement justified? I wasn’t there myself, so I am grateful to those who attended on our behalf. Blogger and patient advocate Sally Burch reported that […]

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 […]

Time for Unrest: Why patients With ME Are Demanding Justice

Jen Unrest

  By Nathalie Wright in The Independent.   “I feel seen for the first time!” exalts one viewer. “I feel vindicated. I finally understand what’s wrong with me, I think I’ve had this all my life,” says another. A doctor admits, “I feel so ashamed.” The film in question is Unrest, a documentary directed by and featuring Jennifer Brea, a former […]

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 […]

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 […]

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