Sallie Rediske discusses pacing with kids and teens, the damages caused by the PACE trial, and what it was like to navigate ME/CFS since childhood--long before she had a diagnosis or language for what she was experiencing. She also describes the fears families face when they are accused of being complicit in their child's illness. Sallie holds a Master of Physical Therapy and had a robust private practice before her health challenges forced a medical retirement. She is a wealth of knowledge and a fierce advocate for people living with ME/CFS.

Chapters: (Times approximate) 00:00 Introduction to ME-CFS and Personal Stories 02:11 Growing Up with ME-CFS: Sallie's Journey 11:05 Pacing and Post-Exertional Malaise Explained 18:27 Recognizing PEM in Children 33:49 Pacing Strategies for Parents and Children 41:03 Coping with Anxiety and Expectations in Parenting 47:33 Neural Retraining: Perspectives and Concerns

Resources: The Workwell Foundation: https://workwellfoundation.org/resources/

Bateman Horne Center ME/CFS Guidebook: https://batemanhornecenter.org/education/mecfs-guidebook/

Rate of Perceived Exertion: https://static.wixstatic.com/media/83510c_123a4edf51014a528623573fe344d119~mv2.png/v1/fill/w_980,h_1307,al_c,q_90,usm_0.66_1.00_0.01,enc_auto/83510c_123a4edf51014a528623573fe344d119~mv2.png

Works authored by Sallie Rediske:

Physical Therapy Must Catch Up-Teaching ME/CFS is No Longer an Option: https://batemanhornecenter.org/physical_therapy_must_catch_up/

Clinical Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome as a Curriculum Thread to Meet Accreditation Standards in Physical Therapy Education: https://nsuworks.nova.edu/ijahsp/vol24/iss1/1/

If you have questions or would like to share your experience on the podcast, please email Mercedes at joytaxpodast@gmail.com

Some of the resources Sallie discusses are available as PDFs. I am happy to email them to listeners upon request.

Produced by NAST Studios.

Becky Diamond is the mom of a son with Long COVID. In this conversation, she talks about the reality of isolation, the ongoing work of advocating for her teen, and what it means to be a "good mother" in impossible circumstances. Becky Diamond is an adjunct professor for NYU, a contributing writer to Psychology Today, and a former war reporter.

You can find her articles here: https://www.psychologytoday.com/us/contributors/becky-diamond