Additional Resources
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If you're interested in reading more about living with a chronic illness or condition, you might enjoy some of these books:
The Invisible Kingdom: Reimagining Chronic Illness by Meghan O'Rourke
The Lady's Handbook for Her Mysterious Illness by Sarah Ramey
Disability Visibility: First-Person Stories from the Twenty-first Century edited by Alice Wong
The following websites contain excellent information and education on chronic illnesses:
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The Long COVID Alliance has collected a number of support groups for different sub-groups of people living with long COVID. Check them out by clicking here.
Speech Therapists at UPMC in Pittsburgh coordinate and host a monthly, virtual support group. Contact Sarah to be connected with them.
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The apps below have been recommended by patients and fellow therapists; some have free versions, and some are subscription based. Please be mindful as you engage with these apps as to not inadvertently exacerbate your symptoms.
Symptom Trackers
Brain Fog
Education
Journal Club
Breaking Down Research for Symptom Management
This section provides research-backed insights on chronic illnesses, offering practical tips to manage symptoms and enhance daily life. Each post summarizes recent studies, addressing key questions like "What was the study about?", "Why is it important for managing chronic conditions?", and "How can it help with symptoms?". My goal is to simplify complex research and offer useful advice to support people in improved self-management of their symptoms.
Wearables to support Long COVID Management
Article:
Resource utilization and multidisciplinary care needs for patients with Ehlers–danlos syndrome
Long COVID and the Gut-Brain Connection
Article:
Resource utilization and multidisciplinary care needs for patients with Ehlers–danlos syndrome
Multidisciplinary care and EDS
Article:
Resource utilization and multidisciplinary care needs for patients with Ehlers–danlos syndrome
Changes in muscle from PEM
Article:
Muscle abnormalities worsen after post-exertional malaise in long COVID
Lymphatic Massage for Long-COVID
Article:
Reducing fatigue-related symptoms in Long COVID-19: a preliminary report of a lymphatic drainage intervention
VNS for Long-COVID
Article:
Transcutaneous vagus nerve stimulation improves Long COVID symptoms in a female cohort: a pilot study
The Overlap of Long-COVID, ME/CFS, and IBS
Article:
Understanding psychological flexibility in long COVID: associations with stress, fatigue, and somatic symptom burden
Psychological Flexibility and Long-COVID
Article:
Understanding psychological flexibility in long COVID: associations with stress, fatigue, and somatic symptom burden
Managing Fatigue with Supplements
Article:
Mitochondrial Dysfunction and Coenzyme Q10 Supplementation in Post-Viral Fatigue Syndrome: An Overview
Circadian Rhythms and Chronic Fatigue
Article:
Circadian rhythm disruption in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Implications for the post-acute sequelae of COVID-19
Long COVID’s Impact on Muscles
Article:
Muscle abnormalities worsen after post-exertional malaise in long COVID
Self-management for HSD and hEDS
Article:
Developing a self-management intervention to manage hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS): an analysis informed by behaviour change theory