Tom Kindlon · @tomkindlon
725 followers · 1824 posts · Server disabled.social4/
"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
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #gradedexercisetherapy #cognitivebehaviouraltherapy #cbt
Tom Kindlon · @tomkindlon
725 followers · 1822 posts · Server disabled.social
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
#MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #pwme #myalgice #cfsme #meeps #cfids #seid #NeuroME #gradedexercisetherapy #cognitivebehaviouraltherapy #cbt
Tom Kindlon · @tomkindlon
718 followers · 1815 posts · Server disabled.social“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”
#SevereME #gradedexercisetherapy #mecfs #pwme #cfs
Tom Kindlon · @tomkindlon
681 followers · 1569 posts · Server disabled.social
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
#gradedexercisetherapy #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs #cfs #myalgice #pwme
Tom Kindlon · @tomkindlon
533 followers · 710 posts · Server disabled.social
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
#pacetrial #MyalgicEncephalomyelitis #pwme #me #mye #chronicfatiguesyndrome #mecfs #cfs #myalgice #meeps #gradedexercisetherapy #get #cognitivebehaviouraltherapy #cbt
Irish ME/CFS Association · @IrishMECFSAssociation
99 followers · 387 posts · Server mastodon.ie
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.
#GradedExerciseTherapy #GET #CBT #MEcfs #CFS #MyalgicE #PwME #MEeps #CFSME #CFIDS #SEID #NeuroME
#gradedexercisetherapy #get #cbt #mecfs #cfs #myalgice #pwme #meeps #cfsme #cfids #seid #NeuroME
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social
"Treatment Harms to Patients with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome" by Dr David Marks (an eminent academic psychologist)
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
#MyalgicEncephalomyelitis #mecfs #cfs #pwme #meeps #exercise #gradedexercisetherapy #get #cognitivebehaviouraltherapy #cbt
Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social6/
“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
#mecfs #cfs #gradedexercise #gradedexercisetherapy #cfsme #pwme
Tom Kindlon · @tomkindlon
301 followers · 109 posts · Server disabled.social
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
#gradedexercisetherapy #cognitivebehaviouraltherapy #MyalgicEncephalomyelitis #mecfs #cfs #myalgice #pwme #me #meeps #cfsme #cfids #seid #NeuroME #cbt #gradedexercise