What's happening in Australia with graded exercise therapy enthusiasts? Explore the Royal Australian College of General Practitioners' role. #gradedexercisetherapy https://fefd.link/7GG5E
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Arbeiten über #MECFS ohne #PEM, das geht sich nicht mehr aus.
Und #GradedExerciseTherapy als Intervention zu #PEM schon gar nicht mehr.
Wer heute #GET bei wissentlicher PEM anordnet, ist bereit, Schaden zuzufügen.
(PEM =/= Fatigue)
www.medscape.com/viewarticle/...
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Summary article for laypeople: "Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" by David Tuller @davetuller1.bsky.social (June 2019)
virology.ws/2019/07/16/t...
#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicEncephalomyelitis
#PwME
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Cartoon strip with two boxes- Heading - Greatest Medical Scandal First box - is divided not two horizontally Top image is a sea of grey faces and the caption says: #MillionsMissing, thousands using wheelchairs, hundreds dead Bottom image is a puzzled stick person saying “Why haven’t Cochrane and Wessely et al changed course now it’s clear that graded exercise disabled and kill’s people with #ME? Second Boxis divided vertically On the left it says ““Good question! Are they anti-science OR did they just get too well rewarded for their unsubstantiated ideas?” (Guess which idea this author prefer?) On the right is a stick man running away with a bag of swag and his crown is falling off behind him. Wise Cat is peeping into the picture and asking “they’re awfully quiet, dare we hope they’ve just run away?” Beneath the cartoon strip the author has signed #FanningTheFlames
#ME #MEcfs #PEM #GET #GradedExerciseTherapy
#BPSM #PsychiatricAbuse
#CochraneReview #simonWessely #GreatestMedicalScandal
Here’s a scandal bigger than the #PostOfficeScandal and the #InfectedBloodScandal combined.
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Making sense of ME/CFS Subscribe Sign in Exercise and other forms of exertion can cause profound and lasting harm to people with ME: various forms of evidence K. JOHNSTONE APR 08, 2024 In this post: Patient surveys show that exertion is harmful Organisations that support people with ME tell us that exertion is harmful Authoritative medical institutions - NICE, the CDC, UpToDate, Mayo Clinic - warn that exercise and exertion can be harmful There is limited scientific evidence to show that exercise is harmful On the irrationality of refusing to consider any evidence other than scientific evidence
Exercise and other forms of exertion can cause profound and lasting harm to people with ME: various forms of evidence
mecfs.substack.com/p/exercise-a...
#GradedExerciseTherapy #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
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Summary article for laypeople: "Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)
virology.ws/2019/07/16/t...
#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis
#PwME
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“(Contd) Worst in its bizarre practices, worst in terms of its potentially fraudulent reporting of results, and worst of all its potential harm it has caused to a very vulnerable group of people".
#GradedExerciseTherapy #CBT #skeptic #sceptics
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Trial By Error: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’? For years, Professor Esther Crawley, the University of Bristol’s methodologically and ethically challenged ME/CFS investigator, has hoovered up millions of pounds from public and private funders to support her misbegotten research. She achieved this success as a grant magnet despite abundant and easily available evidence that she was violating core principles of scientific research. Now, perhaps, the disastrous results of a much-ballyhooed study—“Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomized controlled trial”–could help end her long “reign of error.”
Trial By Error: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’?
Links:
link.springer.com/article/10.1...
virology.ws/2024/03/10/t...
Image from AMMES May 2024 Newsletter
#MEcfs #CFS #PwME #GradedExerciseTherapy
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Screenshot of heading and first three paragraphs
"Trial By Error: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’?" By David Tuller @davetuller1.bsky.social
virology.ws/2024/03/10/t...
#GradedExerciseTherapy #MEcfs #CFS #pwme
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Abstract Since 1969, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been classified as a neurological disease in the International Classification of Diseases by the World Health Organization. Although numerous studies over time have uncovered organic abnormalities in patients with ME/CFS, and the majority of researchers to date classify the disease as organic, many physicians still believe that ME/CFS is a psychosomatic illness. In this article, we show how detrimental this belief is to the care and well-being of affected patients and, as a consequence, how important the education of physicians and the public is to stop misdiagnosis, mistreatment, and stigmatization on the grounds of incorrect psychosomatic attributions about the etiology and clinical course of ME/CFS. Keywords: myalgic encephalomyelitis; chronic fatigue syndrome; ME/CFS
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New
Why the Psychosomatic View on #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Is Inconsistent with Current Evidence and Harmful to Patients
Free full text:
www.mdpi.com/1648-9144/60...
#MEcfs #CFS #PwME #GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT
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The incredible story of the PACE trial for ME/CFS | Introduction K. JOHNSTONE DEC 14, 2023 Several months ago I took on a huge project: to write a history of the PACE trial, a notorious 2011 clinical trial which tested treatments for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). The PACE trial was initially hailed as a great success, but later became a notorious story about a piece of very bad science which somehow made it through the peer-review process to be published in an eminent journal, and ended up guiding the treatment of patients for a decade, causing incalculable harm. It was exposed, not by scientists or doctors, but by chronically ill citizen-scientists and a journalist. Much has already been written about the PACE trial, but I wanted to create a brief and comprehensive overview of this story which doesn’t assume the reader has any prior knowledge.
Congratulations to Katie Johnstone for her 3-part article on the #PACEtrial which cost c. £5M of UK taxpayers' money & part funded by the UK Department of Work & Pensions
It's all available for free starting here:
mecfs.substack.com/p/the-incred...
#MEcfs #CFS #PwME #GradedExerciseTherapy #CBT
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