#MEAction is a great advocacy organization for ME/CFS and Long-COVID that offers a wide range of support and services for patients.
One of their recent projects was developing Pacing and Management Guides for ME/CFS and Long-COVID, with input from patients and medical experts. They have published two guides that are perfect for sharing with doctors and other medical professionals, physical therapists, and schools:
Pacing and Management Guide for ME/CFS and Long-COVID (for all patients)
Pacing and Management Guide for Pediatric ME/CFS and Long-COVID
Both guides provide a medical overview of what ME/CFS and Long-COVID are, a detailed explanation of post-exertional malaise (PEM) and how it limits patients, why exercise and Graded Exercise Therapy (GET) are harmful, tips on pacing, and resources. The pediatric guide would have been SO helpful in thr many battles we fought with our sons' schools to get them appropriate accomodations.
So, check these out, print them, and share them with any medical professionals (or school personnel) you or your child interact with.
Are these guides something that you will find helpful?
How could you use something like this?
There is also a guide for CLINICIANS as well as some translations of the adult pacing guide.
ReplyDeleteLinks on this page:
https://www.meaction.net/resource/pacing-and-management-guide/
Thank you for the extra link to more information - that's great!
ReplyDeleteSue