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

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/

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