Organizations Find a Specialist Communities Dietary Tools & Trackers Educational Clinical Trials Books

A note on external links

All organizations, communities, and tools listed here are independent of Seen. We link to them because they have demonstrated value to this patient community, not because of any affiliation. As with all health information, apply your own judgment, and bring what you learn to a physician you trust.

Professional & Advocacy Organizations

Established organizations dedicated to research, education, and patient support across the conditions in this cluster. Most maintain physician referral networks and publish patient-accessible clinical guidance.

EDS & HSD

The Ehlers-Danlos Society

The leading international organization for EDS and HSD: research, physician education, patient support, and the most current diagnostic criteria. Maintains a healthcare provider directory searchable by specialty and location.

ehlers-danlos.com

POTS & Dysautonomia

Dysautonomia International

The most comprehensive patient and research organization focused on POTS and dysautonomia. Funds research, educates physicians, and maintains an extensive physician referral list organized by condition and geography.

dysautonomiainternational.org

Mast Cell Disease

The Mastocytosis Society

Patient advocacy and research organization covering the full spectrum of mast cell diseases, including MCAS and systemic mastocytosis. Publishes patient guides and supports specialist education.

tmsforacure.org

Migraine

American Migraine Foundation

Patient-focused migraine education and advocacy, including a searchable headache specialist directory, treatment overviews, and a strong library of plain-language clinical content.

americanmigrainefoundation.org

Migraine Research

Migraine Research Foundation

Funds innovative migraine research and makes findings accessible to patients. A useful resource for staying current on emerging treatments, particularly for chronic and treatment-refractory migraine.

migraineresearchfoundation.org

Allergy & Immunology

AAAAI

The American Academy of Allergy, Asthma and Immunology, the professional body for allergists and immunologists. Includes a Find an Allergist tool and clinical practice parameters relevant to MCAS evaluation and management.

aaaai.org

Mast Cell Disease & Complex Diagnosis

Mayo Clinic

Mayo Clinic's patient-facing resources on mast cell disease, autonomic conditions, and connective tissue disorders are among the most rigorously reviewed available. Mayo Clinic Laboratories also offers the most comprehensive MCAS urine mediator testing panel commercially available, relevant for patients pursuing diagnosis.

mayoclinic.org

MCAS Diagnostic Testing

Mayo Clinic Laboratories: MCAS

Mayo Clinic Laboratories offers the most robust portfolio of MCAS urine mediator testing commercially available, including panel and individual urine mediator tests. Their research documents that MCAS diagnosis takes approximately 30 years on average from symptom onset, the diagnostic gap Seen. exists to help close.

news.mayocliniclabs.com

POTS & Dysautonomia

PoTS UK

UK-based but internationally respected patient organization for postural tachycardia syndrome. Produces some of the clearest patient-facing clinical guidance on POTS diagnosis, management, and the Levine Protocol.

potsuk.org

ME/CFS & Long COVID & Fibromyalgia

Bateman Horne Center

A 501(c)(3) non-profit medical center of excellence dedicated to research, clinical care, and education for ME/CFS, Long COVID, and fibromyalgia. Founded by Dr. Lucinda Bateman, it produces some of the most clinically actionable patient and provider resources available, including a comprehensive Clinical Care Guide, a state-by-state resource directory, and free education modules for health professionals.

batemanhornecenter.org

POTS & Dysautonomia

The Dysautonomia Project

A global leader in dysautonomia education for patients, providers, and communities. Produces free online courses, a widely recommended patient and clinician book, and DysCourse, a free educational event series taught by leading autonomic specialists. One of the most accessible entry points for newly diagnosed patients and their physicians.

thedysautonomiaproject.org

Long COVID

Long COVID Alliance

A coalition of patient advocates, researchers, and organizations working to accelerate Long COVID research and increase access to clinical trials. Advocates for NIH funding and maintains a research landscape overview. Directly relevant given Long COVID's role as a primary pathway into dysautonomia and POTS.

longcovidalliance.org

ME/CFS & Long COVID

Solve ME/CFS Initiative

A US nonprofit accelerating ME/CFS research through funding, biobanking, and advocacy. Runs the Solve ME/CFS Biobank and patient registry, and publishes accessible research summaries for patients. One of the most research-forward organizations in this space.

solvecfs.org

ME/CFS

ME Association (UK)

UK-based charity providing support, information, and advocacy for people with ME/CFS. Funds research, operates a nurse helpline, and publishes an extensive patient handbook. Internationally respected for the quality of its patient-facing clinical guidance.

meassociation.org.uk

Finding Specialists

Finding a physician who is knowledgeable about this condition cluster is often the hardest part of the journey. These directories and strategies give you the best starting point.

Dysautonomia International Physician Directory

The most comprehensive searchable directory of physicians who treat POTS and dysautonomia, organized by specialty (autonomic neurology, cardiology, internal medicine) and geographic location. Search by condition and country.

Search the directory

EDS Society Healthcare Provider Directory

Searchable database of providers with EDS and HSD training or experience, including geneticists, rheumatologists, physical therapists, and multi-disciplinary clinics. Searchable by specialty, location, and condition.

Search providers

American Migraine Foundation Specialist Finder

Find headache specialists and neurologists with migraine expertise, searchable by zip code and distance. Headache specialists (neurologists with additional migraine subspecialty training) are distinct from general neurologists.

Find a headache specialist

AAAAI Allergist Finder

Locate board-certified allergists and immunologists near you. When searching for MCAS evaluation, look for allergists with interest in mast cell disorders or hypersensitivity reactions, which is worth asking about when you call to inquire.

Find an allergist

Autonomic Neurology Specialists

For complex or treatment-refractory POTS, an autonomic neurologist offers the most comprehensive evaluation: tilt table testing, QSART, and catecholamine panels. Major autonomic centers include UT Southwestern, Vanderbilt, Mayo Clinic, and Cleveland Clinic.

Dysautonomia International directory

What to ask before the appointment

When calling a new practice, it is entirely reasonable to ask: "Does this provider have experience with POTS / MCAS / hypermobile EDS?" A single conversation with the front desk can save weeks of waiting for an appointment with someone unfamiliar with your conditions.

Vanderbilt Autonomic Dysfunction Center

One of the world's leading autonomic research and clinical centers. Conducts clinical trials on POTS, orthostatic hypotension, and related conditions. Sees complex dysautonomia patients. For patients who have not responded to standard treatment, Vanderbilt is among the most appropriate referral destinations in the US.

Visit Vanderbilt ADC

UT Southwestern Autonomic Disorders Program

Led by Dr. Benjamin Levine, who developed the evidence-based POTS exercise rehabilitation protocol widely used today. Conducts research on POTS pathophysiology and exercise-based reconditioning. For patients pursuing the Levine Protocol with specialist supervision, UT Southwestern is the source.

Visit UT Southwestern

Johns Hopkins Autonomic Disorders Center

Multidisciplinary autonomic disorders program specializing in POTS, small fiber neuropathy, and autoimmune autonomic conditions. Small fiber neuropathy is present in a significant percentage of POTS cases and is frequently missed without skin punch biopsy testing, which Johns Hopkins performs.

Visit Johns Hopkins

Cleveland Clinic Autonomic Disorders Program

Comprehensive autonomic disorders program offering advanced diagnostic testing and treatment. Particularly known for expertise in complex dysautonomia cases. Offers tilt table testing, QSART, and thermoregulatory sweat testing as part of a full autonomic evaluation.

Visit Cleveland Clinic

Mayo Clinic Adolescent Autonomic Dysfunction Clinic

A specialized Mayo Clinic Children's Center program for teenagers with POTS, dizziness, nausea, fatigue, and related autonomic conditions. One of few dedicated pediatric and adolescent autonomic clinics in the United States. Particularly relevant for younger patients whose symptoms are often dismissed or attributed to anxiety in general pediatric care.

Visit the clinic

Dysautonomia Support Network Healthcare Provider Map

A patient-compiled directory of healthcare providers across multiple specialties and therapies relevant to dysautonomia and comorbid conditions. Viewable as a map or spreadsheet. DSN does not endorse individual providers. Due diligence is recommended, and patient recommendations are the source of each listing.

Browse the map

Patient Communities

Online communities can be extraordinary sources of support, practical knowledge, and the feeling of finally being understood. Apply critical thinking to medical claims. Communities are best for emotional support and lived experience, not diagnosis or treatment decisions.

Reddit

r/POTS

One of the most active POTS communities online. Valuable for practical day-to-day management tips, medication experiences, and emotional support from people who genuinely understand.

Best for: lived experience, symptom validation, practical tips. Verify medical information with your physician.

Visit community

Reddit

r/MCAS

Community for mast cell activation syndrome. Particularly useful for navigating dietary triggers, medication sensitivities, and finding physicians. The community is experienced and generally evidence-oriented.

Best for: dietary strategies, medication reactions, finding knowledgeable physicians. Cross-reference with published guidance.

Visit community

Reddit

r/ehlersdanlos

Active community for all EDS and HSD subtypes. Strong on physical therapy strategies, bracing, pacing, and navigating the diagnostic process. Includes discussion of POTS and MCAS comorbidity.

Best for: PT strategies, daily management, diagnostic navigation, comorbidity discussion.

Visit community

Reddit

r/Migraine

Large and active migraine community covering all aspects of migraine management: preventives, abortives, triggers, lifestyle, and the emotional weight of chronic migraine. Welcoming to both episodic and chronic sufferers.

Best for: treatment experiences, trigger identification, emotional support.

Visit community

Facebook

Dysautonomia Support Network

One of the largest dysautonomia groups on Facebook, covering POTS, orthostatic hypotension, and related conditions. Moderated and generally well-maintained. Useful for connecting with patients at all stages of diagnosis.

Best for: community connection, physician recommendations by region, navigating insurance and access.

Forum

ChatDys Community Forum

A dysautonomia-focused community forum hosted by ChatDys, an AI-assisted platform built specifically for the dysautonomia patient community. The forum offers peer discussion across symptoms, treatments, and daily life with autonomic conditions. Particularly useful for patients who want a structured, condition-specific space rather than a general social media group.

Best for: dysautonomia-specific peer discussion, AI-assisted support, structured forum format.

Visit ChatDys Forum

Forum

Phoenix Rising (ME/CFS Forums)

One of the largest and most research-oriented online communities for ME/CFS patients. Includes detailed discussions of research findings, treatment experiences, and peer support. A significant number of members also have POTS and MCAS, making it unusually relevant for the full cluster.

Best for: in-depth research discussion, treatment experiences, cross-condition insight. High signal-to-noise ratio compared to many groups.

Visit Phoenix Rising

Facebook

MCAS and Mast Cell Support Groups

Multiple active Facebook groups exist for MCAS. Search "MCAS support" or "mast cell activation" to find groups relevant to your experience. Vary in quality; look for groups with active moderation and evidence-based discussion norms.

Best for: dietary strategies, medication sensitivity discussions, emotional support.

Dietary Resources

Diet is one of the most powerful and most confusing variables in MCAS and histamine intolerance management. These resources represent the most credible and practical references available, from the research foundation to the daily kitchen.

Free

SIGHI Compatibility List

The Swiss Interest Group Histamine Intolerance's food compatibility guide: the most widely used practical dietary reference for histamine intolerance and MCAS in the international patient community. Foods organized into three tolerance tiers. Available in multiple languages. Use as a starting framework, not a rigid prescription, since individual tolerance varies significantly.

Download the SIGHI list
Research

Maintz and Novak: Histamine and Histamine Intolerance (2007)

The foundational academic paper cataloguing foods by histamine content, histamine-releasing capacity, and DAO enzyme inhibition. The scientific basis underlying most dietary guidance for histamine intolerance. Useful to share with physicians who are unfamiliar with dietary histamine as a clinical variable.

View on PubMed
Free

The Low Histamine Chef

Yasmina Ykelenstam's extensive recipe and resource site for low-histamine cooking: one of the most practically useful dietary resources in this community. Recipes are organized by tolerance level and include whole foods that work for many MCAS patients. A good companion to the SIGHI list when translating the theory into actual meals.

Visit the site
Free

Salt and Fluid Loading: Dysautonomia International Patient Guide

Dysautonomia International's patient-facing guidance on sodium and fluid loading for POTS, including specific target amounts, timing strategies, and the evidence behind them. The most credible freely available resource on this foundational management strategy. Always discuss with your physician before significantly changing sodium intake.

Read the guide

Tools & Trackers

Systematic tracking transforms vague patterns into legible data, for you and for your physicians. These tools serve different purposes and different levels of complexity.

Free · Beta

Seen. Symptom Tracker

Seen.'s own tracking tool, built specifically for people navigating POTS, MCAS, HSD, and migraine as a cluster. Designed to capture the interactions between conditions, generate physician-ready reports, and work from your phone without an app store download. Free during beta.

Open the Tracker
Free & Paid · Beta

ChatDys: AI Assistant for Dysautonomia & Related Conditions

An AI chat platform trained on PubMed, peer-reviewed journals, and a curated knowledge base of nearly 7,000 condition-specific documents covering POTS, MCAS, EDS, dysautonomia, migraine, and adjacent conditions. Includes a symptom and health tracker, a living health roadmap, wearable and lab data integration, a community map connecting patients by location, and a genetics explorer for 150+ relevant SNPs. One of the most condition-literate AI tools available to this patient community. Free during beta. Not a substitute for medical care.

Visit ChatDys
Free & Paid

Visible

A pacing and energy management app designed specifically for ME/CFS and Long COVID, widely adopted in the POTS community. Uses heart rate variability data to help patients stay within their energy envelope and avoid post-exertional malaise. Particularly useful during reconditioning. Pairs well with the Seen. tracker for a more complete picture.

Visit Visible

Bearable

A highly customizable symptom and health tracking app used widely in the chronic illness community. Not condition-specific, but its flexibility makes it adaptable for MCAS, POTS, and migraine tracking. Supports correlation analysis between symptoms, triggers, medications, and other variables.

Visit Bearable

Visible

A pacing and energy management app originally designed for ME/CFS that has been adopted widely in the POTS community. Uses heart rate variability data to help patients pace activity and avoid post-exertional malaise. Particularly useful during the reconditioning process.

Visit Visible
Free

Migraine Buddy

One of the most widely used migraine tracking apps: logs attacks, duration, severity, potential triggers, medications, and relief. Generates reports designed for neurologist appointments. Free tier is robust; premium adds deeper analytics.

Visit Migraine Buddy

Educational Resources

Patient brochures, clinical primers, physician guides, and authoritative podcasts you can read, listen to, or share with your care team. Sharing well-sourced clinical literature is one of the most effective tools available to patients navigating these conditions.

Free

Root Causes & Treatment of Mast Cell Disease (IFM Podcast with Dr. Lawrence Afrin)

An in-depth conversation with Dr. Lawrence Afrin, one of the physicians who helped define MCAS as a clinical entity, hosted by the Institute for Functional Medicine. Dr. Afrin discusses mast cell biology, why MCAS is so often missed, the limitations of standard testing, and the systems-level thinking required to identify and treat the condition. One of the clearest, most authoritative spoken-word resources available on MCAS. Particularly useful for patients preparing to discuss MCAS evaluation with a physician, or for sharing with care teams unfamiliar with the condition.

Listen to the podcast
Free

POTS Diagnosis and Treatment: A Guide for Physicians

A comprehensive physician education guide developed by Dysautonomia International. Covers POTS diagnostic criteria, subtypes, and evidence-based treatments. Free to download and share with your care team. One of the most useful documents to bring to a cardiologist or internist unfamiliar with POTS.

Download the guide
Free

ME/CFS Primer for Clinical Practitioners

A clinical primer developed by the International Association for CFS/ME for healthcare providers. Covers diagnosis, management, and current research on ME/CFS. Particularly useful to share with primary care physicians or specialists who are seeing ME/CFS or Long COVID patients for the first time.

Access the primer
Free

Dysautonomia International Patient Brochures

Free downloadable patient brochures covering POTS, MSA, PAF, NCS, and other dysautonomia conditions. Available in multiple languages. Clear, concise, and appropriate for sharing with family members, employers, or physicians who need a plain-language introduction to dysautonomia.

Download brochures
Free

Hypermobile EDS and Migraine, National Headache Foundation

A clinical resource page from the National Headache Foundation explaining the connection between hypermobile Ehlers-Danlos Syndrome and migraine, written for patients and clinicians. Useful for patients trying to bring the connection to a headache specialist's attention, or for understanding why their migraine pattern may not respond to standard preventives until comorbid hypermobility is addressed.

Read the resource
Free

Bateman Horne Center Patient Education Library

A library of patient education materials on ME/CFS, fibromyalgia, and Long COVID including videos, handouts, and webinar recordings. Produced by one of the leading clinical and research centers in this space. Quality is consistently high and the materials are designed to be shared with care teams.

Browse the library

Clinical Trials

Participating in clinical research is one of the most meaningful ways to contribute to progress for this patient community, and trials often provide access to treatments and evaluations not yet available in standard care.

Free

NIH RECOVER Initiative

The NIH's national research program studying Long COVID and its overlap with POTS, ME/CFS, and other post-infectious conditions. Includes a patient registry, biorepository, and multiple clinical trials testing treatments for Long COVID symptoms. One of the largest and best-funded research efforts currently underway in this space. Open to patients with Long COVID and associated conditions.

Learn about RECOVER
Free

ClinicalTrials.gov: POTS Studies

Search for active clinical trials studying POTS treatments, including new medications, exercise protocols, and device therapies. Filter by location and eligibility criteria to find trials you may qualify for. Updated continuously as new trials open.

Search POTS trials
Free

ClinicalTrials.gov: ME/CFS Studies

Search for active clinical trials studying ME/CFS and Long COVID treatments, including NIH RECOVER initiative trials and independent research studies. Filterable by location, age, and eligibility. ME/CFS research is expanding rapidly and new trials open regularly.

Search ME/CFS trials

Books & Recommended Reading

A short, curated list: not exhaustive, genuinely useful. These are the books most frequently cited by patients and clinicians as having made a meaningful difference in understanding or managing these conditions.

The Dysautonomia Project

Kevin Murphy & Kyle Whelchel, MD

One of the most accessible and comprehensive patient-facing books on dysautonomia and POTS. Written by a patient and a physician in collaboration. Covers pathophysiology, diagnosis, and management in language that is rigorous without being inaccessible.

Best for: Newly diagnosed patients; sharing with physicians unfamiliar with dysautonomia.

Disjointed: Navigating the Diagnosis and Management of Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Diana Jovin, Editor

An edited volume featuring contributions from leading EDS and HSD clinicians and researchers. Covers diagnosis, physical therapy, pain management, autonomic involvement, and the multisystem nature of the condition. One of the most clinically rigorous patient-accessible resources on hypermobility.

Best for: Patients with EDS or HSD seeking deep clinical understanding; physical therapists and physicians learning about the condition.

Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemics of Chronic Illness and Medical Complexity

Lawrence B. Afrin, MD

Written by one of the physicians who helped define MCAS as a clinical entity, this book explains the condition in depth and makes the case for why mast cell activation is an underrecognized driver of diverse chronic illness. Dense but rewarding.

Best for: Patients who want deep mechanistic understanding of MCAS; physicians building familiarity with the condition.

The Migraine Brain

Carolyn Bernstein, MD & Elaine McArdle

A neurologist-authored guide to understanding migraine as a neurological condition, covering brain biology, triggers, treatments, and lifestyle management. Accessible and evidence-based, with particular strength on the emotional and social dimensions of living with chronic migraine.

Best for: Migraine patients seeking to understand their condition; useful for sharing with family members.

The Body Keeps the Score

Bessel van der Kolk, MD

While not specific to POTS or MCAS, this landmark book on trauma and its physiological manifestations is deeply relevant to patients whose conditions have been dismissed, minimized, or attributed to anxiety. Understanding the nervous system's role in both trauma and physical illness illuminates the experience of chronic invisible disease.

Best for: Patients navigating the psychological dimensions of chronic illness and medical gaslighting.

When the Body Says No: The Cost of Hidden Stress

Gabor Maté, MD

A landmark exploration of the connection between unprocessed emotional stress, suppressed self-expression, and chronic illness. Drawing on decades of clinical experience, Dr. Maté examines how trauma, attachment patterns, and chronic stress influence immune function, autonomic regulation, and the development of inflammatory and autoimmune conditions. Particularly relevant for patients in this cluster: research now confirms direct biological pathways by which chronic stress and trauma prime mast cell reactivity, dysregulate the autonomic nervous system, and amplify pain processing. Reading Maté reframes the question from 'is it psychological or physical?' to 'how are mind, nervous system, and immune system actually connected?'

Best for: Patients exploring the trauma-chronic illness connection; understanding the mind-body link in a clinically rigorous way.