ME PACE Trial

Is It Just ME Or Is This A Real Disease ?

Lost

  By George Winter in The Medical Independent. George Winter examines the evolution of recognition for myalgic encephalomyelitis (ME). In 1926, TS Eliot, then editor of The Criterion, published Virginia Woolf’s essay On Being Ill, where she bemoans the “poverty of language” with which to describe illness: “Let a sufferer try to describe a pain in his […]

Trial By Error: Another Letter to NICE’s Sir Andrew Dillon

David Tuller

  By David Tuller.   First, for those who might have missed it, here’s a conversation from This Week in Virology (TWiV), posted a few days ago. Dr. Racaniello and I discuss the CDC, NICE, Esther Crawley’s ethically challenged behavior, the CMRC, and other stuff. Second, earlier today, I sent the following e-mail to Sir Andrew Dillon, […]

Myth: ME Is A Mental Illness

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  By Riki Janssen in Observant.   Mythbusters Patients are not just a little bit tired, but are permanently exhausted. Sleeping doesn’t help much – if they can sleep properly at all – and they usually pay a high price for any physical exertion: remaining even more tired than they were, for days on end. According to […]

Why Did It Take The CDC So Long To Reverse Course On Debunked Treatments For Chronic Fatigue Syndrome ?

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  By Julie Rehmeyer and David Tuller in statnews.com.   For years, people with chronic fatigue syndrome have wrangled with the Centers for Disease Control and Prevention over information on the agency’s website about this debilitating illness. The website highlighted two treatments that became the de facto standards of care: a gradual increase in exercise and a form of psychotherapy […]

Trial By Error: The NICE “Topic Expert”

David Tuller

    By David Tuller, DrPH.   My first recent freedom of information request to the National Institute for Health and Care Excellence (NICE) was for information about the experts consulted in the current process of reviewing CG53, the 2007 guidance for the illness the agency calls chronic fatigue syndrome/myalgic encephalomyelitis. In its response, the agency explained […]

Graded Exercise Therapy Causes Harm In ME/CFS. Everyone Knows That, Right ?

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    From The Self Taught Author Blog by Clark Ellis.   What is patently obvious to the majority of ME/CFS sufferers is not at all obvious to most others. It is not obvious to NHS staff. It not obvious to academics and politicians. It is not obvious to the public. There are many reports […]

QMUL “Studying” PACE Data-Release Ruling

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    By Alex Anderssen in #MEAction.   Queen Mary University of London (QMUL) have issued a statement in response to Tuesday’s tribunal ruling that they must release anonymised PACE trial data to a patient who requested it under the Freedom of Information Act. The data would allow the calculation of main outcome and recovery figures using analyses that […]

Post Seventeen – The PACE Trial Scandal

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    From the Blog, puffins&penguins&me   I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t […]

Why Are Doctors And Patients Still At War Over M.E.? How The Best Treatment For The Debilitating Condition Is One Of The Most Bitterly Contested Areas In Medicine

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  By Jerome Burne For The Daily Mail.   Myalgic encephalomyelitis (ME) is a debilitating condition that can leave those affected bedridden for years. It’s linked with as many as 60 symptoms, the most common being a feeling of constant exhaustion — ‘like a dead battery’. The condition first reached mainstream consciousness in the Eighties following […]

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

David Tuller

  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 […]

NICE Refuse To Take Down Harmful Treatments 25,000 Children Harmed ?

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  By Tina Rodwell.   I had my reply from NICE. For some reason David Hahalam did not want to talk to me. Well I am not important, am I? After all I am just one of the 25,000 parents that would like ME taken seriously to protect the children from harm. A good solid […]

This Is Why I Quit Exercise Therapy

Walking

  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

Coyne

    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 […]

Trial by Error: NICE Rejects My FOI Request

David Tuller

  By David Tuller, DrPH in Virology Blog.   The National Institute for Health and Care Excellence, the U.K. organization that develops clinical guidelines for medical conditions, has rejected my freedom-of-information request for the names of the experts involved in the reassessment of the guidance for the illness it calls CFS/ME. This isn’t surprising, since […]

CDC Removes Reference To Disputed ME/CFS Therapies From Website

David Tuller

  By David Tuller in Undark.   The agency has long recommended two controversial treatments for chronic fatigue syndrome. Earlier this month, it quietly made some changes.   For years, the U.S. Centers for Disease Control and Prevention recommended two controversial treatments for ME/CFS, the illness often known as chronic fatigue syndrome: a program of […]

Trial By Error, Continued: Is PACE A Case Of Research Misconduct ?

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    by David Tuller, Dr PH [June 25, 2017: The last section of this post, about the PLoS One study, has been revised and corrected.] I have tip-toed around the question of research misconduct since I started my PACE investigation. In my long Virology Blog series in October 2015, I decided to document 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. […]

PACE-GATE: An Alternative View On A Study With A Poor Trial Protocol

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    By Bart Stouten in Journal of Health Psychology.   Abstract The controversies surrounding the effectiveness of cognitive behavioural therapy and graded exercise therapy for chronic fatigue syndrome are explained using Cohen’s d effect sizes rather than arbitrary thresholds for ‘success’. This article shows that the treatment effects vanish when switching to objective outcomes. The preference […]

Bias, Misleading Information And Lack Of Respect For Alternative Views Have Distorted Perceptions Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome And Its Treatment

Nervous System

    By Ellen Goudsmit and Sandra Howes in Journal of Health Psychology.   Abstract The PACE trial is one of the most recent studies evaluating cognitive behavioural therapy and graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome. These interventions are based on a model which assumes that symptoms are perpetuated by factors such as misguided beliefs […]

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 […]

Trial By Error, Continued: My Libelous Blogging On Virology Blog

David Tuller

  By David Tuller in Virology Blog.   During a recent talk at the annual conference of the British Renal Society, pediatrician and staunch PACE proponent Esther Crawley accused me of libeling her. I wasn’t at her presentation, but her slides were captured and tweeted. Dr. Crawley’s lecture recounted her heroic struggle against the dark […]

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