#gradedexercisetherapy — Public Fediverse posts

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Summary article for laypeople: "Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" by David Tuller @david (June 2019)

https://virology.ws/2019/07/16/trial-by-error-nhs-me-cfs-clinics-lax-on-treatment-harms-study-finds/

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicEncephalomyelitis
#PwME @mecfs

Someone in your circles mentioning the shitty Wired article on Long COVID?

One of the experts quoted by the Wired article found the article so error-riddled that they wrote this rebuttal: https://www.longcovidadvoc.com/post/commentary-on-the-long-covid-article-by-alan-levinovitz-in-wired-magazine

Beyond an accurate rebuttal listing factual evidence against the Wired article's gist, the rebuttal also gives some excellent context for why the original piece took that shape:

remember, the author is a professor of religion

Overall, A+ article, recommend for anyone seeking actual information or needing a reference against harmful suggestions like CBT and GET/Graded Exercise Therapy.

#CBT #GET #GradedExerciseTherapy #GradedExercise #LongCOVID

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Summary article for laypeople: "Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" by David Tuller (June 2019)

https://virology.ws/2019/07/16/trial-by-error-nhs-me-cfs-clinics-lax-on-treatment-harms-study-finds/

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis
#PwME @mecfs

On its 13-year anniversary, just plugging my paper, "Reporting of Harms Associated with #GradedExerciseTherapy and #CognitiveBehaviouralTherapy in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome

Points raised are still very relevant now; if graded exercise/activity approaches are seen as safe, it's quite possible pressure could be put on some patients to undertake them.

https://drive.google.com/drive/folders/1vzCvi86gv-aManb9wywg-mJYKE9sjjky

#MEcfs #CFS #MyalgicE #PwME #ME @mecfs #CBT #GradedExercise @longcovid
#LongCovid

Exercise and other forms of exertion can cause profound and lasting harm to people with ME: various forms of evidence

https://mecfs.substack.com/p/exercise-and-other-forms-of-exertion

#GradedExerciseTherapy #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs

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Summary article for laypeople: "Trial By Error: NHS ME/CFS Clinics Lax on Treatment Harms, Study Finds" (June 2019)

https://virology.ws/2019/07/16/trial-by-error-nhs-me-cfs-clinics-lax-on-treatment-harms-study-finds/

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT #MEcfs #CFS #MyalgicE #MyalgicEncephalomyelitis
#PwME @mecfs @longcovid @b_m_hughes @david

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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
@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Trial By Error: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’?

Links:
https://link.springer.com/article/10.1007/s00431-024-05458-x
https://virology.ws/2024/03/10/trial-by-error-will-magentas-null-results-finally-end-professor-crawleys-long-reign-of-error/

Image from AMMES May 2024 Newsletter

#MEcfs #CFS #PwME #GradedExerciseTherapy @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome

"Trial By Error: Will MAGENTA’s Null Results Finally End Professor Crawley’s Long ‘Reign of Error’?" By David Tuller

https://virology.ws/2024/03/10/trial-by-error-will-magentas-null-results-finally-end-professor-crawleys-long-reign-of-error/

#GradedExerciseTherapy @mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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🧵
New
Why the Psychosomatic View on #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Is Inconsistent with Current Evidence and Harmful to Patients

Free full text:
https://www.mdpi.com/1648-9144/60/1/83

#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT @mecfs
#MEcfs #CFS #PwME #MyalgicE

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Congratulations to Katie Johnstone for her three-part article on the famous/infamous PACE trial which cost in the region of £5 million of UK taxpayers' money and was at the time (and possibly still is) the only trial part funded by the Department of Work and Pensions in the UK.

It's all available for free starting here:
https://mecfs.substack.com/p/the-incredible-story-of-the-pace-577

@mecfs

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT

🧵
"Despite Resistance, Policy Makers Push The Paradigm On ME/CFS And Long COVID"
by Prof Brian Hughes ( @b_m_hughes ), Prof Steven Lubet & David Tuller DrPH

https://www.healthaffairs.org/content/forefront/despite-resistance-policy-makers-push-paradigm-me-cfs-and-long-covid

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers
#GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT

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"They didn’t understand PEM. I was told if I didn’t try GET it meant I didn’t really want to get better. I was told it was impossible for exercise to harm. They told me how GET helped patients much sicker than me with MS, stroke & Parkinsons. If they could do it, why couldn’t you."

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #GradedExerciseTherapy #cognitivebehaviouraltherapy #CBT

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Response to this on the bird site:
"The head psych I had to see at my local hospital for CBT & GET had never ever read any scientific papers about ME outside the field of psychology. I found this out as I was asking how his statements fitted with the science I had read. GET ended up disabling me permanently (contd.)"

@mecfs #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME #MEeps #CFIDS #SEID #NeuroME #GradedExerciseTherapy #cognitivebehaviouraltherapy #CBT

“I've had ME for 16 years, & #severeME for 14 years after #GradedExerciseTherapy (GET), & being told the harmful advice to push myself left me much worse, severe, housebound & bed-bound half the day. In all the years since, I've never recovered from it” 😢😡

“the hardest symptoms to explain to people are how even mental stimuli can be exhausting & overwhelming - Light, sound, touch, motion, watching things or people move around”

https://meassociation.org.uk/rnpf
@mecfs #mecfs #pwme #cfs

An example of somebody with ME/CFS that was sadly made worse by a #GradedExerciseTherapy program.

Also discusses Emerge Australia's services

From Emerge Australia's newsletter.
People can join them here:
https://www.emerge.org.au/

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #PwME @mecfs

Today is the 4th anniversary of publication of this rejoinder which can be read for free here
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0296-x

The more important paper is initial paper which included re-analyses of £5m #PACETrial results which can be read for free here
https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3

#MyalgicEncephalomyelitis #PwME #ME #MyE #ChronicFatigueSyndrome #MEcfs #CFS #MyalgicE #MEeps #GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #Cbt

From ME Association:

https://meassociation.org.uk/2023/02/research-treatment-harms-to-patients-with-me-cfs

Research: Treatment Harms to Patients with ME/CFS
February 2, 2023

David F Marks, PhD Independent Researcher from Arles, France, has collated research concerning the approaches to treating ME/CFS and focuses on the practices that have been shown to cause harm to people. The full research paper can be read from the link below.

https://www.opastpublishers.com/open-access-articles/treatment-harms-to-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome.pdf

#GradedExerciseTherapy #GET #CBT #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #NeuroME

"Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by Dr David Marks (an eminent academic psychologist)

Free fulltext:
https://www.opastpublishers.com/open-access-articles/treatment-harms-to-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome.pdf

Great to see this published

Professionals have let down patients by not alerting everyone to this issue

#MEcfs #CFS #PwME #MEeps #Exercise #GradedExerciseTherapy #GET #cognitivebehaviouraltherapy #CBT @mecfs @longcovid

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“This has been compounded by a lack of effective treatments, wide variation in access to services, and no central register of harms experienced by patients from the treatments offered, which has served only to further alienate many people with ME/CFS and, in some cases, to undermine the confidence of those caring for them”

Tom: Great to see this. I first mentioned central register point in a published letter in 2010

#MEcfs #CFS #GradedExercise #GradedExerciseTherapy #cfsme #pwme

On its 11-year anniversary, just plugging my paper, "Reporting of Harms Associated with #GradedExerciseTherapy and #CognitiveBehaviouralTherapy in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome

Points raised are still very relevant now; if graded exercise/activity approaches are seen as safe, it's quite possible pressure could be put on some patients to undertake them.

https://drive.google.com/drive/folders/1vzCvi86gv-aManb9wywg-mJYKE9sjjky

#MEcfs #CFS #MyalgicE #PwME #ME #MEeps #CFSME #CFIDS #SEID #NeuroME @mecfs #CBT #GradedExercise