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#gradedexercisetherapy

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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

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

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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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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

“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 »

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

"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

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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

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