Patient Resources
Helpful Links
CDC ME/CFS Patient Toolkit - Tools for people who think they may have ME/CFS, those already diagnosed, and for family members seeking information.
Long Covid Physio - A peer support, education and advocacy, patient-led association of Physiotherapists (Physical Therapists) living with Long COVID.
Awareness for POTSies - A non-profit organization providing support to the POTS and chronic illness community.
The Dysautonomia Project - A non-profit collaborative effort to provide dysautonomia education to patients, healthcare providers, and communities.
Solve ME/CFS - A non-profit organization serving as a catalyst for research into myalgic encephalomyelitis/chronic fatigue syndrome, Long Covid and other post-infection diseases.
Dysautonomia International - A non-profit that seeks to improve the lives of those with autonomic nervous system disorders through research, education and public awareness.
Long Covid Alliance - A network of patient-advocates, scientists, disease experts, and drug developers using knowledge and resources to educate policy makers and accelerate research.
The American ME and CFS Society - Serving patients and caregivers living with myalgic encephalomyelitis/chronic fatigue syndrome through support, advocacy, and education.
The Ehlers-Danlos Society - A global organization dedicated to advancing and accelerating research and education in Ehlers-Danlos syndromes and hypermobility spectrum disorders.
EDS Awareness - Helping people with Ehlers-Danlos find or organize support groups in their local communities.
Dysunderstood - Aims to raise awareness and enhance education on complex and infection-associated chronic conditions.
Health Rising - Dedicated to providing timely, accurate information to people with ME/CFS and fibromyalgia.
VIDEOS: #MEAction Maryland - Webinar series presenting the latest research in pediatric ME by Dr. Peter Rowe to help educate working medical professionals on how to recognize, diagnose, treat, and support the growing population of children and young people with ME.
Helpful Documents
Activity Diary Sheet — Use our easy-to-use activity diary to track your ME/CFS symptoms.
Compression Garments — Learn how compression garments can help you manage your ME/CFS symptoms.
Cooling Garments — Find out how you can benefit from using cooling garments to help control your symptoms.
Corn-free Diet — Learn how to begin a corn-free diet.
Dairy-free Diet — Find out how to start a dairy-free diet.
Egg-free Diet — Begin an egg-free diet using this resource.
Electrolytes and Salt Supplements — Understand the value of increasing salt and fluid intake.
Fatigue and Energy Conservation — Learn how to conserve energy with this resource.
Gluten-free Diet — Begin a gluten-free diet using this resource.
Low Histamine Diet — Find out how to start a low histamine diet.
Post Exertional Malaise — Learn about post exertional malaise and how to manage it.
Soy-free Diet — Use this resource to help you begin a soy-free diet.
Loss of Smell — Learn about a loss of smell, the symptoms and how to treat it.
Links to Third-Party Websites
The above resources are intended for informational purposes only. Third-party materials do not necessarily express the opinions of Johns Hopkins Medicine. These links are for convenience only, and the mention of any product, service, organization, activity or therapy are not intended to indicate an endorsement by or affiliation with Johns Hopkins Medicine.