Telehealth resource for Flu & COVID

• See our blog post on the Home Test To Treat program through NIH

Long-COVID: Exercise + Pacing

+ Videos and Webinars

• Video series on Post-COVID fatigue management: on strategies to manage post-covid fatigue, based on experiences of managing fatigue in other conditions and current understanding of Long Covid; from the RICOVR Unit at Sheffield Hallam and the CRESTA Fatigue Clinic
• Physios4ME roundtable discussion on supporting people with Post-Viral Fatigue Syndrome and ME/CFS, how to distinguish between PVF, PVFS and ME, exercise physiological changes in people with ME, and advice to physiotherapists
• Physios4ME podcast episode on heart rate monitoring, Part 1 and Part 2
• ME Action Webinar: ME/CFS and Long COVID: What’s the connection?
  • seminar for Post-COVID-19 “Long Haulers” to learn more about ME/CFS as a potential diagnosis after viral infection; on symptom presentation and diagnosis of ME/CFS, pacing and management strategies, coping with a new chronic illness, advocating in your doctor’s office and beyond

+ Articles and Guides

• How To Manage Post-Viral Fatigue after COVID, a guide by the Royal College of Occupational Therapists
• ME Action's Pacing and Management Guide
• Recovery from Chronic Fatigue Syndrome, an online book by Bruce Campbell
• Purely Pacing, a short letter by Jennie Jacques, an Open Medicine Foundation ambassador
• Indefinitely Ill–Post-COVID Fatigue, a letter from person with ME/CFS on listening to your body
  • a long read, but members of the Body Politic COVID-19 Support Group said this essay changed their life
• Q & A: Pacing for Chronic Illness and I Did A Pacing Master Class, blog posts from Natasha Lipman, BBC reporter and blogger with ME/CFS

“Stop what you are trying to do and listen to your body as it tells you it needs to be quiet now. You will not ‘fight’ your way out of this. It is not a test of your character or your will. You need to stop and listen to the only body you will ever have.”

— Maria, Indefinitely Ill – Post-Covid Fatigue

+ Interactive Online Resources

• Breath Work for Post-COVID Long-Haulers: a program recommended by Mt. Sinai's Post-COVID Recovery Center
  • works with Long Haulers to calm their sympathetic nervous system, improve their lung capacity and their parasympathetic nervous system
    • free 30 minute consultation to get started, followed by free enrollment 4-12 week breathing program; individual coaching sessions cost $30/session.

Dysautonomia

+ Videos and Webinars

• Dysautonomia Symptoms in Long Haul COVID 19: What we know so far
  • Researchers from Stanford University and Stony Brook University discuss dysautonomia symptoms that are occurring in some COVID-19 patients, and what COVID patients need to know about dysautonomia
• Autonomic Dysfunction in the post-COVID long hauler, from Pulmonary Wellness Foundation
• Dysautonomia International Video Library

+ Text-based

• Summary on Orthostatic Intolerance, by Johns Hopkins specialist Dr. Rowe
• Dysautonomia International Provider List

Employment and Disability Benefits

+ Videos and sites

• How To Get On, website with advice about navigating disability benefit applications and appeals from the chronic illness community who has been through it before
  • This website has been significantly helpful for Long-Covid patients in the Body Politic Support Group — here is a lot to read and learn on this blog, so take plenty of breaks and bookmark pages to return to later
• The Sleepy Girl Guide to Social Security Disability, with artwork by Elizabeth D’Angelo

• Navigating Career & Life Transitions with Chronic Illness, a Body Politic event with Rehabilitation Counselor Dr. Julie Hill
  • conversation with specialist in career transitions for people with chronic illness/disabilities
• Coronavirus (Covid-19) and disability: How to do it, with a disability specialist who has gone through it herself

Peer Support

+ Support Groups

• Check out our Guide to Community Support, a printable handout guide showing different support groups available for people with Long COVID. Each support group listed was vetted by our team. We created this for medical professionals to print and give to long haulers. It can help you choose a support group that is patient-led, and fits your specific needs.

+ Other

• Long-COVID Physio, a global peer support and advocacy group for Physiotherapists (Physical Therapists) and support workers living with Long-COVID
• COVID-19 Long-Haulers and the Burden of Doubt, a letter from a therapist with ME/CFS to Long-COVID patients

To the COVID-19 patients who are searching for information, support, and community, these are the things I wish someone had told me when I became ill.

— Jennifer Diamond, MA, LMFT

Miscellaneous

+ Videos and Webinars

• Playlist: Webinars on Long-COVID
• Playlist: Resources for Long-COVID patients

+ Other

• Preliminary Long COVID Diagnostic Test Resources
  • Long COVID Diagnostic Tests, a preliminary diagnostic testing resource for patients and their providers, including research and patient-supported biomarkers and non-standard diagnostic tests in the support of diagnosing and treating patients

• Pain Management Online Resources
  • The Feldenkrais Project: Feldenkrais Lessons for All!, a gentle body awareness method that can help some with pain; patients recommend doing only the laying down sessions, and consider ending session early if fatigued
  • The Lady's Handbook for Her Mysterious Illness, by Sarah Ramey; also available as an audiobook "In her harrowing, defiant, and unforgettable memoir, Sarah Ramey recounts the decade-long saga of how a seemingly minor illness in her senior year of college turned into a prolonged and elusive condition that destroyed her health but that doctors couldn’t diagnose or treat. Worse, as they failed to cure her, they hinted that her devastating symptoms were psychological."