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Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review

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  By Mark Vink and Alexandra Vink-Niese in Health Psychology Open.   Abstract The analysis of the 2017 Cochrane review reveals flaws, which means that contrary to its findings, there is no evidence that graded exercise therapy is effective. Because of the failure to report harms adequately in the trials covered by the review, it cannot […]

A Statement In Support Of Cochrane

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  From the Virology Blog. Cochrane has decided to temporarily withdraw a review of exercise therapies for the illness variously known as ME, CFS, ME/CFS and CFS/ME. The review reported that exercise therapy is effective in treating the illness—a finding that has provided unwarranted support for recommendations that patients should undergo the intervention known as […]

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 […]

Guidelines For ME/CFS Outdated And Dangerous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

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  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: Mayo Still Champions GET

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  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

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  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 […]

CBT & GET – Parliamentary Question

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  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 […]

A Morass Of MUS

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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 […]

When You Can’t Just ‘Push Through the Pain’

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  By Stacey T in The Mighty.   This post may get a little soap-box-like, but it’s something I need to talk about because it’s become a huge issue for me. So, most people have heard the phrases “pushing through pain,” “no pain, no gain” and similar ones. But when you have chronic illnesses or […]

ME Sufferers Welcome ‘Unreliable’ Stamp On Exercise Report

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  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 […]

Post-Exertional Malaise (PEM) And Graded Exercise Therapy (GET) In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

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By S. Eyssens.   Preface: “The public have an insatiable curiosity to know everything, except what is worth knowing.”Oscar Wilde. Until Europeans discovered Australia, Black Swans did not exist, let alone could they even be imagined. They did not make sense, nor could they be, as they challenged common sense and common knowledge at that time in our […]

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

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    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. […]

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

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  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 […]

Chronic Fatigue Syndrome Is A PHYSICAL Condition Not A Mental Illness, Says Ellen Wiles

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  By Ellen Wiles in The Express.   Before I fell ill life was sweet and full of promise. Fresh out of Oxford University, where I had somehow come top in the year, I was working in consultancy while I figured out what I really wanted to do. Then just before Christmas I got flu. I spent […]

David Tuller And The (S)PACE Cake Eaters

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    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 […]

For People With Chronic Fatigue Syndrome, More Exercise Isn’t Better

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  By Michaeleen Doucleff in npr.org. Health organizations are emphasizing that myalgic encephalomyelitis/chronic fatigue syndrome is a serious long-term illness, not a psychological disorder, and that standard forms of exercise do not help. Instead, they’re acknowledging that exercise can make the disease much worse unless doctors and patients are very careful. The Centers for Disease Control and […]

What Should I Do When Someone Tells Me to Exercise ?

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  By Sleepy girl in her ‘How To Get On’ Blog.   Many people with ME and Chronic Fatigue Syndrome are told by their doctors that exercise will help them. This is often called “Graded Exercise Therapy,” though some doctors doctors will simply recommend “exercise”. Some people are also advised to exercise by their loved […]

Trial By Error: My E-Mail Exchange With NICE Chief Executive

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  By David Tuller, DrPH.   On Friday, I had an e-mail exchange with Sir Andrew Dillon, chief executive of the NICE Guidance Executive. The other seven Guidance Executive members are various directors within the NICE hierarchy, including the communications director. This group will make the final decision about whether to accept the provisional decision of a […]

This Is Why I Quit Exercise Therapy

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  By Camilla Maxted in BuzzFeed.   It took 11 medical appointments across 20 weeks of pain and despair before I finally got a diagnosis. For months, I’d been suffering from exhaustion so extreme that bit by bit, I’d had to let my whole life drop away. For a long time I tried to ignore it – after all, […]

Angry Scientists Throw Insults At Each Other Over The Results Of A £5 Million Taxpayer-Funded Study Into Chronic Fatigue Syndrome

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    By Stephen Matthews in Mail Online.   Angry scientists are throwing cheap insults at each other regarding the ‘flawed’ results of a landmark £5 million British study on chronic fatigue syndrome. One medical journal dedicated its entire August edition to ripping apart the ‘unreliable’ trial, which was funded by taxpayers. In response, three […]

The Making Of The PACE Scandal

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    From Centre for Welfare Reform.   A Special Issue of the Journal of Health Psychology on the PACE Trial, is to be published and freely available online on Monday 31 July 2017. It marks a special contribution of the Journal of Health Psychology to the literature concerning interventions to manage chronic  health problems. The […]

On Your Marks GETSET: Don’t Go – Major Graded Exercise ME/CFS Trial Underwhelms (Again)

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    By Cort Johnson in Health Rising.   The Lancet — one of the most highly regarded journals in the world — is back on the chronic fatigue syndrome (ME/CFS) community’s front page. That’s probably enough to either elicit curses from ME/CFS patients or to produce a strong desire to hide under one’s bed. […]

Missing More: Exercise To Keep Job

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From Missing More. Brett’s experience from Australia illustrates the global impact of UK graded exercise therapy and related research. It also shows the immense pressure that people with ME are under to comply with exercise regimes: When I first was diagnosed with ME, I was told that the illness was psychosomatic and that I had […]

How A Study About Chronic Fatigue Syndrome Was Doctored, Adding To Pain And Stigma

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    By Steven Lubet in The Conversation.   The public relies on scientists to report their findings accurately and completely, but that does not always happen. Too often, researchers announce only their most favorable outcomes, while keeping more disappointing results well out of sight. This phenomenon, first identified by the psychologist Robert Rosenthal in […]

UK And Global Petition: It’s Time To Stop Graded Exercise Therapy (GET) Trials For ME/CFS

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    After months of hard work from #MEAction, #MEAction Network UK, and many others including advocates, government officials, lawyers, and PACE experts, a group of concerned global citizens have crafted a petition to the UK government to stop graded exercise therapy trials in ME/CFS.  If this petition reaches 10,000 signatures from UK citizens, its […]

New CBT And GET Threat For Australian CFS Patients

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  By Sasha Nimmo in Shout Out About ME.   Australian CFS researcher, Prof Andrew Lloyd last year explained he was working on an online program of graded exercise therapy (GET) and cognitive behavior therapy (CBT) at the University of NSW’s Fatigue Clinic. Prof Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably […]

US Neuroscientist Says Exercise Is A Noxious Stimulus That Worsens Symptoms Of ME/CFS

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  By Penny Swift in The Argus Report.   A highly regarded American neuroscientist who has researched CFS for more than a decade, has decried media reports based on The Lancet Psychiatry’s recent scientific article that claims graded exercise therapy (GET) is an effective treatment for Chronic Fatigue Syndrome (CFS). The Lancet Psychiatry report, published […]

Renowned Scientists Condemn PACE Study

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By Russell Logan in shoutaboutme.com   An international group of scientists has added to the growing condemnation of the PACE trial study, published in the Lancet in 2011, which has propped up poor government and clinical care policies for those with the serious neurological illness myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. An open letter from […]

Trial By Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study

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  By David Tuller, DrPH David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley. A few years ago, Dr. Racaniello let me hijack this space for a long piece about the CDC’s persistent incompetence in its efforts to address the devastating illness […]

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