Tom KindlonDec 9, 2024

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

Fall 2011 – Google Drive

Google Drive
Show threadTom KindlonJan 4, 2024

5/

"Prof Steve Griffin...said the study suggests “the approach to treating conditions such as #longCovid, ME & #CFS [#myalgicencephalomyelitis & #chronicfatiguesyndrome] using #gradedexercise regimens is entirely flawed. Moreover, it appears over-exercising under these circumstances is actually directly damaging”

https://inews.co.uk/news/long-covid-patients-serious-injury-running-cycling-2837180

@mecfs #MEcfs #PwME @longcovid
#PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #longhaulers #PASC
@covid19 #Coronavirus
#COVID19 #COVID #SARSCoV2 @novid

Long Covid patients risk serious long-term injury from running or cycling

A new study helps to explain why people with long Covid can feel such high levels of fatigue

inews.co.uk
Show threaddr elmyraMay 13, 2023

I found the "research" this is based on. It's from 2009 and assumes that CBT and #GradedExercise work. So the approach it incentives is "push through the fatigue and live a 'normal life' and you'll be happier".

Of course we know that that is actively harmful to people with #mecfs and leads to long-term worsening of our condition.

How is this still in use? (Rhetorical question.)

Show threadTom KindlonJan 19, 2023

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 #GradedExerciseTherapy #cfsme #pwme

copsewoodJan 10, 2023
Those concerned about appropriate treatment for sufferers of #LongCovid and #MECFS are likely to be interested in this refutation of the fightback by those who were pushing failed #GradedExercise therapy. https://thesciencebit.net/2023/01/10/eight-or-more-logical-fallacies-in-that-paper-bemoaning-the-new-nice-guideline-for-me-cfs/
Eight (or more) logical fallacies in that paper bemoaning the new NICE guideline for ME/CFS

Regular readers will recall that I have previously written about the UK's new healthcare guidelines for ME/CFS, as published by the National Institute for Health and Care Excellence (NICE) in 2021. Whereas the old guidance had proposed that patients be given a combination of graded exercise therapy (GET) and CBT, the newly updated guideline completely rejected these two treatments. Having completed the most extensive research review ever conducted on the matter, NICE soberly concluded that there was insufficient empirical evidence to support their continued use.

The Science Bit
Tom KindlonDec 9, 2022

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

Fall 2011 – Google Drive

Google Drive
ME/CFS Münster (Bot)Dec 10, 2020

RT Anil van der Zee © (@AnilvanderZee)
#GET

Author: WantedAlive

Illustrator: Rick Menard

https://thesciencebit.net/2020/11/10/could-this-actually-be-happening/
#pwme #myalgicE #millionsmissing #severeME #LongCovid #MedTwitter #GETout #gradedexercise

🐦🔗: https://twitter.com/AnilvanderZee/status/1336820726012186625

Could this actually be happening? - The Science Bit

Mark this day in your calendar. We could be observing the beginning of the end of a decades-long medical scandal. In the UK, the National Institute for Health and Care Excellence (NICE) have published new draft guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome”. These are very […]

The Science Bit