ME PACE Trial

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

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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 […]

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

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    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 […]

Missing More: Graded Exercise Therapy Ruined Me

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    From the Stop Graded Exercise Campaign.   Missing More after graded exercise therapy is a series of posts from the perspective of people with ME for ME Awareness Month (May). If you have a story to share about exercise and ME see this post for instructions about how to contribute. Sometimes we hear people […]

Treating Chronic Fatigue Syndrome With Cognitive Behavioral Therapy And Graded Exercise Therapy: How The PACE Trial Got It Wrong

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  By Harriet Hall in Science Based Medicine.   Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), and the recently-suggested IOM term systemic exertion intolerance disease (SEID), is characterized by long-term fatigue and a host of other symptoms that impair the patient’s ability to function. It sometimes develops after a flu-like illness, but can also […]

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 […]

Getting It Wrong On Chronic Fatigue Syndrome

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    By Julie Rehmeyer and David Tuller in The New York Times.   What are some of the treatment regimens that sufferers of chronic fatigue syndrome should follow? Many major medical organizations cite two: psychotherapy and a steady increase in exercise. There’s just one problem. The main study that has been cited as proof that […]

Parliamentary Questions Asked By MP Kelvin Hopkins

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  From OMEGA   Kelvin Hopkins, Member of Parliament for Luton North, has addressed some written parliamentary questions about ME/CFS research and treatment recommendations to the Department of Health and Department for Business, Energy and Industrial Strategy.  He asked if the Secretary of State for Business, Energy and Industrial Strategy will request that the Medical […]

Response To “Why We Are Supporting The MEGA Research Project” Action for ME Nov22/2016

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    By James David Chapman   MEGA: I will not support CFS researchers who refuse to discuss CFS research. I do not believe science and “patient engagement” is served when patients’ questions are blocked.  The continued joint silence over Pace gives me no confidence in the MEGA trial proposals. People with M.E (pwme) have […]

You, ME And CBT

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    From the Jamison Writes Blog.   I remember when a doctor of mine suggested I incorporate cognitive behavioral therapy (CBT) and graded exercise therapy (GET) into my treatment plan. She might as well have said, “Hey Jamison, I’d like you to try smoking cigarettes to treat your symptoms. Start slow, maybe a few […]

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