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#gradedexercisetherapy

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Public
Tom Kindlon

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.

drive.google.com/drive/folders

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

Screenshot of title and abstract
Public
Tom Kindlon

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:
mecfs.substack.com/p/the-incre

@mecfs

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.
#MyalgicEncephalomyelitis#ChronicFatigueSyndrome#MEcfs
Continued thread
Public
Tom Kindlon

4/

"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

Continued thread
Public
Tom Kindlon

3/
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

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. 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.
Public
Tom Kindlon

“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”

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

The ME AssociationSevere ME Week 2023: Leanne's Story - The ME AssociationBut the hardest symptoms to explain to people are how … Severe ME Week 2023: Leanne’s Story Read More »
Public
Irish ME/CFS Association

From ME Association:

meassociation.org.uk/2023/02/r

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.

opastpublishers.com/open-acces

#GradedExerciseTherapy#GET#CBT
Public
Tom Kindlon

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

Free fulltext:
opastpublishers.com/open-acces

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

Screenshot of abstract
Continued thread
Public
Tom Kindlon

6/

“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
Public
Tom Kindlon

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.

drive.google.com/drive/folders

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

Screenshot of abstract for paper
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