Resource Directory

Search for active clinical trials studying ME/CFS and Long COVID treatments. Includes NIH RECOVER initiative trials and other research studies.

Search for active clinical trials studying POTS treatments, including new medications, exercise protocols, and device therapies. Filter by location and eligibility.

The NIH's national research initiative studying Long COVID. Includes a patient registry, biorepository, and multiple clinical trials testing treatments for Long COVID symptoms including POTS and fatigue.

A library of patient education materials on ME/CFS, fibromyalgia, and Long COVID from the Bateman Horne Center. Includes videos, handouts, and webinars.

Free downloadable patient brochures on POTS, MSA, PAF, NCS, and other dysautonomia conditions. Available in multiple languages. Ideal for sharing with healthcare providers.

Comprehensive resource library from the Ehlers-Danlos Society including diagnostic criteria, management guides, and research updates for EDS and hypermobility spectrum disorders.

A clinical primer developed by the International Association for CFS/ME (IACFS/ME) for healthcare providers. Covers diagnosis, management, and the latest research on ME/CFS.

A comprehensive physician education guide developed by Dysautonomia International. Covers POTS diagnosis criteria, subtypes, and evidence-based treatments. Free to download and share.

UK-based organization providing information and support for patients with autonomic disorders. Maintains a directory of UK autonomic specialists.

The leading global nonprofit organization dedicated to advancing research, awareness, and patient support for all forms of dysautonomia. Hosts the annual Dysautonomia International Conference and funds research grants.

The global nonprofit organization dedicated to saving and improving the lives of those affected by EDS and hypermobility spectrum disorders. Provides patient resources, healthcare professional education, and research funding.

A coalition of patient advocates, researchers, and organizations working to accelerate Long COVID research and support patients. Advocates for NIH funding and clinical trial access.

UK-based charity providing support, information, and advocacy for people with ME/CFS. Funds research and provides a nurse helpline and patient handbook.

A nonprofit organization dedicated to improving the lives of people affected by Multiple System Atrophy through research funding, patient support, and caregiver resources.

UK-based charity providing support, information, and advocacy for people with POTS and related conditions. Offers a helpline, online community, and resources for patients and healthcare professionals.

A US nonprofit accelerating ME/CFS research through funding, biobanking, and advocacy. Runs the Solve ME/CFS Biobank and patient registry.

A nonprofit organization supporting patients with mast cell diseases including MCAS and mastocytosis. Provides educational resources, physician referrals, and research advocacy.

Comprehensive autonomic disorders program offering advanced testing and treatment. Known for expertise in MSA and complex dysautonomia cases.

Multidisciplinary autonomic disorders program at Johns Hopkins Hospital. Specializes in POTS, small fiber neuropathy, and autoimmune autonomic conditions.

Comprehensive autonomic disorders program at Mayo Clinic offering advanced diagnostic testing (tilt table, QSART, TST) and treatment for all forms of dysautonomia. Multiple locations: Rochester MN, Scottsdale AZ, Jacksonville FL.

A nonprofit funding dysautonomia research and providing patient education. Hosts the annual Patient Conference and funds research grants.

Led by Dr. Benjamin Levine, who developed the POTS exercise protocol. Conducts research on POTS pathophysiology and exercise-based rehabilitation.

One of the world's leading autonomic research and clinical centers, led by Dr. Italo Biaggioni and Dr. David Robertson's legacy team. Conducts clinical trials and sees complex dysautonomia patients.

The official Dysautonomia International patient support group on Facebook with over 50,000 members. Moderated to ensure accurate information sharing.

One of the largest and most active online communities for ME/CFS patients. Includes research discussions, treatment experiences, and peer support.

UK-based charity providing support, information, and a helpline for MSA patients and caregivers. Funds research and provides a network of support groups.

UK-based Facebook support group for POTS patients, moderated by POTS UK charity. Provides peer support and information sharing.

Reddit community for all forms of dysautonomia. Includes discussions on POTS, MSA, PAF, NCS, and related conditions.

Reddit community dedicated to Mast Cell Activation Syndrome. Shares experiences with symptoms, triggers, medications, and low-histamine diet strategies.

A Reddit community with over 50,000 members sharing experiences, tips, and support for POTS. Active daily discussions on symptoms, treatments, and daily life management.

A clinical and research center specializing in ME/CFS, fibromyalgia, and Long COVID. Offers telehealth consultations and participates in clinical trials. Based in Salt Lake City, UT.

A searchable database of physicians worldwide who have expressed willingness to treat dysautonomia patients. Includes telehealth-available providers. Updated regularly by Dysautonomia International.

A telehealth platform specializing in ME/CFS, Long COVID, and dysautonomia. Connects patients with providers experienced in these conditions for remote consultations.

A comprehensive symptom and health tracking app that allows customizable tracking of symptoms, medications, treatments, and triggers. Popular among dysautonomia patients.

Fertility and menstrual cycle tracking apps that can help dysautonomia patients identify hormonal patterns that worsen symptoms.

A wearable ring that continuously monitors heart rate, HRV, sleep stages, and body temperature. Widely used by dysautonomia patients to track autonomic health and identify patterns.

A wearable and app designed specifically for ME/CFS and Long COVID patients. Tracks heart rate variability, activity, and symptoms to help patients pace and avoid post-exertional malaise.