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A note on external links
All organizations, communities, and tools listed here are independent of Seen. I 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.
Guides
Practical guides I've written to help you navigate life with these conditions.
Here's how to document your symptoms so your doctor can act on them
Recording what you're living with so a busy clinician can read the pattern in seconds: what's worth writing down, how to make it readable in the room, and how to lower the bar on the days you barely have the capacity.
Read the guideBrain fog is real. Here's how to describe it so your doctor takes you seriously
How to describe brain fog in words a doctor can act on, tell it apart from fatigue, and walk in with a dated record instead of a vague word.
Read the guidePOTS is real, and it is measurable. Here is how to document it so your doctor takes you seriously
What to track for POTS so a doctor can act on it: your symptoms and how severe they are, your heart rate lying down versus standing, your triggers, and the medications you actually took.
Read the guidePOTS has no disability listing, so your record has to do the work. Here is how to build one.
What to track for a POTS disability claim: what you could not do each day, how long you lasted upright before symptoms stopped you, how long recovery took, and the obligations you missed.
Read the guideME/CFS has no disability listing, but Social Security wrote a rule for how these claims are judged. Here is how to build the record that rule asks for.
What to track for an ME/CFS disability claim: what you did each day, the crash that follows a day or two later, your hours of sleep and time upright, and the obligations you missed.
Read the guideMCAS has no disability listing, so your record has to do the work. Here is how to build one.
What to track for an MCAS disability claim: your reactions and which parts of your body they hit, when each one started and how long it lasted, what set it off, the medications you took, and the days you missed.
Read the guideHypermobility has no disability listing, so your record has to do the work. Here is how to build one.
What to track for an hEDS or HSD disability claim: your joint pain joint by joint, the times a joint slips or gives way, your fatigue, what you could not do, and a one-time flexibility history.
Read the guideMigraine has no disability listing, and these claims turn on how many days a month it stops you. Here is how to build that record.
What to track for a migraine disability claim: every headache day and how disabling it was, the symptoms that make it migraine, each dose you took, and a dated count of the days you lost by month.
Read the guideMast cell reactions leave a trail. Here is how to document yours so your doctor can act on it.
What to track for MCAS so a doctor can act on it: your symptoms and which body systems they hit, when each episode started, what you were exposed to beforehand, and the medications you took.
Read the guideHypermobility is more than being flexible. Here is how to document it so your doctor can act on it.
What to track for hEDS and HSD so a doctor can act on it: your joint pain and where it lives, the moments a joint gives way, your flexibility history, and the medications you actually took.
Read the guideMigraine is not just a headache. Here is how to document it so your doctor can act on it.
What to track for migraine so a doctor can act on it: every headache day and its severity, the symptoms that make it migraine, your triggers, and each dose of acute medication you took.
Read the guideME/CFS keeps its worst days out of the exam room. Here is how to document them so your doctor can act on them.
What to track for ME/CFS so a doctor can act on it: what you did each day, the crash that follows on a delay, your hours of sleep and time upright, and a short daily note.
Read the guideFMLA intermittent leave runs on numbers only you can count. Here's how to track them.
What to record for FMLA intermittent-leave certification: how often your symptoms take you out and how long each episode lasts, counted month by month, so your provider has real numbers for the frequency and duration blank on form WH-380-E.
Read the guideIn an ERISA disability claim, the record you build now is the only one a court may ever see. Here is how to build it.
What to track for an ERISA long-term disability claim: what you could not do each day, how long recovery took, and why it has to reach the file while your appeal is still open.
Read the guide
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
POTS & Dysautonomia
Standing Up to POTS
Nonprofit that funds POTS research (it co-funded the 2026 trial comparing ivabradine and propranolol), produces The POTScast, and keeps a peer-reviewed research library organized by topic.
standinguptopots.org
Autonomic Medicine
American Autonomic Society
The professional society for clinicians and scientists in autonomic medicine. Publishes the journal Clinical Autonomic Research and keeps a physician directory of autonomic specialists.
americanautonomicsociety.org
CSF Leak & Intracranial Hypotension
Spinal CSF Leak Foundation
Patient-founded organization for spontaneous spinal CSF leak, an underdiagnosed and often treatable cause of positional headache that is easily mistaken for migraine. Physician directory, conference videos, and an international patient registry launched in 2026.
spinalcsfleak.org
Mast Cell Disease
The Mast Cell Disease 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
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
EDS, POTS & MCAS
The EDS Clinic
A clinical practice specializing in EDS, POTS, and MCAS that also maintains one of the strongest patient-facing learning centers in the space. Their educational articles on the trifecta, histamine intolerance, and dysautonomia are exceptionally well-written and clinically grounded. The curated resources page is a directory in its own right.
eds.clinic
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
ME/CFS & Long COVID Research
Open Medicine Foundation
A US nonprofit funding collaborative research into ME/CFS, Long COVID, and related complex diseases, founded by Linda Tannenbaum in 2012 after her daughter became severely ill. Led by a scientific advisory board that includes Stanford geneticist Dr. Ron Davis, OMF supports some of the most rigorous biomedical research currently underway in this space. Maintains a patient registry (StudyME) and a medical education center co-developed with the Bateman Horne Center.
omf.ngo
ME/CFS & Long COVID Advocacy
#MEAction
An international patient-led advocacy network for ME/CFS and Long COVID, co-founded by filmmaker and patient Jennifer Brea. Focuses on research funding, medical education, and mobilizing patients to engage health policy at the national level. Scientific Director Jaime Seltzer is a researcher with Stanford Medicine. Staff members themselves live with ME/CFS, POTS, MCAS, and EDS, making this one of the most authentically patient-centered organizations in the space.
meaction.net
Autoimmune Disease
Autoimmune Association
The leading US umbrella organization for autoimmune disease, formerly AARDA. Publishes patient education across the full autoimmune spectrum, maintains a curated list of patient apps and support communities, and advocates for the roughly 50 million Americans living with autoimmune conditions. Relevant here because Hashimoto's, lupus, and rheumatoid arthritis travel with this cluster more often than most patients are told.
autoimmune.org
Vestibular & Dizziness
Vestibular Disorders Association (VeDA)
The leading patient organization for vestibular disorders worldwide. Publishes over 100 peer-reviewed patient articles, maintains a provider directory, and curates external resources spanning apps, advocacy groups, and disability support. Directly relevant for vestibular migraine and the dizziness that travels with POTS.
vestibular.org
Chronic Pain
US Pain Foundation
The largest patient organization in the US for people living with chronic pain. Runs the Pain Connection support group network, publishes the INvisible Project, and curates practical tools including app recommendations for symptom tracking. Their EDS onboarding content meets newly diagnosed hypermobile patients where they are.
uspainfoundation.org
Mast Cell Disease
Mast Cell Action
UK charity dedicated to MCAS. Produces PIF TICK accredited patient information, printable symptom logs, school and workplace kits, and moderated support groups for adults and parents. One of the most practical MCAS organizations anywhere, and the first stop for UK patients.
mastcellaction.org
POTS & Dysautonomia
DINET (Dysautonomia Information Network)
One of the oldest dysautonomia patient communities online. Maintains a library of medical research, a large directory of external links, an active patient forum, and physician lists built from patient experience. DINET was making the research reachable for patients long before most organizations existed.
dinet.org
POTS & Dysautonomia
Dysautonomia Support Network
A patient support community more than 50,000 members strong. Publishes an assistive technology handbook, recommends practical third-party tools, and runs peer support across the dysautonomia spectrum. Strong on the daily-life questions clinical resources rarely answer.
dysautonomiasupport.org
Long COVID
Long Covid Support
UK charity grown from one of the largest Long Covid peer communities in the world, with more than 67,000 members in its support groups. Publishes practical guidance on getting help, recommends symptom-tracking tools, and facilitates patient involvement in research. Directly relevant given Long COVID's role as a primary pathway into POTS and dysautonomia.
longcovid.org
POTS & Dysautonomia
Australian POTS Foundation
Australia's national POTS charity. Funds research grants, maintains a clinician directory, runs patient and professional education, and curates organizations across POTS and its related conditions. The essential starting point for Australian patients.
potsfoundation.org.au
Hypermobility
HMSA (Hypermobility Syndromes Association)
UK charity covering the full spectrum of hypermobility syndromes, including HSD, hEDS, and their travelling companions. Runs a helpline, moderated peer support, membership programs, and professional education. One of the few organizations that treats hypermobility and its comorbidities as one picture.
hypermobility.org
Migraine
Association of Migraine Disorders
US nonprofit supporting migraine research and education, and the migraine organization most invested in comorbidity. Their content and podcast cover connections most migraine resources never touch, including histamine and allergy. Runs the Shades for Migraine awareness campaign.
migrainedisorders.org
Migraine
The Migraine Trust
The leading UK migraine charity. Runs a helpline, maintains a headache clinic directory, and publishes PIF TICK accredited patient information on diagnosis, treatment, and self-management. Their patient guidance sets the standard for clarity.
migrainetrust.org
EDS & Chronic Pain
Chronic Pain Partners (EDS Awareness)
Patient-led EDS nonprofit publishing webinars with leading EDS clinicians, patient guides, a support group directory, and curated app recommendations for managing EDS and the conditions that travel with it. Built by patients, for patients, since 2011.
chronicpainpartners.com
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 directoryEDS 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 providersAmerican 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 specialistAAAAI 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 allergistAmerican Autonomic Society Physician Directory
The autonomic-medicine society's own list of member physicians who evaluate and treat dysautonomia, including POTS. Smaller than the Dysautonomia International list, but every name on it is a specialist in the field. Useful for finding an autonomic neurologist or cardiologist who can run tilt table testing, QSART, and catecholamine panels.
Search AAS membersSpinal CSF Leak Foundation Physician Directory
Clinicians with experience diagnosing and treating spinal CSF leak and intracranial hypotension: a headache that worsens after time upright and eases lying flat, which is often filed as migraine for years. Relevant in hypermobility, where connective tissue makes leaks more likely.
Find a CSF leak specialistWhat 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 ADCUT 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 SouthwesternCleveland 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 ClinicCenter for Complex Diseases (Dr. David Kaufman)
Dr. David Kaufman is an Internal Medicine physician specializing in ME/CFS, dysautonomia, MCAS, autoimmune disease, and chronic infections including tick-borne illness and Long COVID. Co-founder of the Center for Complex Diseases in Mountain View, CA, he is a member of the ME/CFS Collaborative Research Center at the Stanford Genome Technology Center and a working member of the U.S. ME/CFS Clinical Coalition guideline committee. One of the few clinicians in the country with deep expertise across the full constellation of interconnected conditions.
Visit Center for Complex DiseasesDysautonomia Clinic (Dr. Svetlana Blitshteyn)
Dr. Blitshteyn is an autonomic neurologist, a co-author of the MCAS Consensus-2 criteria, and among the most published researchers on the POTS, hypermobility, MCAS, and migraine overlap. Her New York clinic sees POTS, autonomic and small fiber neuropathy, EDS, MCAS, and chronic migraine, and offers in-office, phone, and video consults so you do not have to travel.
Visit Dysautonomia ClinicAIM Center for Personalized Medicine (Dr. Tania Dempsey and Dr. Lawrence Afrin)
The practice in Purchase, NY where the lead author of the MCAS Consensus-2 criteria (Dr. Afrin) and its co-author Dr. Dempsey see patients. Focus on mast cell activation, dysautonomia, ME/CFS, tick-borne illness, and complex multi-system disease. Dr. Dempsey's site also carries a large library of plain-language MCAS articles and videos.
Visit AIM CenterHypermobility MD (Dr. Linda Bluestein)
Dr. Bluestein is an anesthesiologist turned hypermobility specialist and a co-author of the MCAS Consensus-2 criteria. Her practice offers medical evaluations for hypermobility, EDS, and related pain (in person, currently by waitlist) and hypermobility coaching, and her site hosts the Bendy Bodies podcast listed under Educational Resources.
Visit Hypermobility MDCenter for Multisystem Disease (Dr. Jill Schofield)
Denver practice focused on autoimmune dysautonomia, POTS, small fiber neuropathy, and MCAS. Dr. Schofield co-authored the 2026 Consensus-2 review and the research on immunoglobulin therapy for autoimmune POTS listed in the Research Library.
Visit the CenterCenter for Complex Neurology, EDS & POTS (Dr. David Saperstein)
Phoenix neurology practice built around EDS and HSD, POTS and dysautonomia, MCAS, Chiari and craniocervical instability, and long COVID together, rather than one at a time, with telemedicine available. One of a small number of clinics that names the whole constellation on its door. Check the site for current intake status before you call.
Visit the CenterMayo 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
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.
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 communityr/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 communityr/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 communityr/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 communityDysautonomia 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 ForumForum
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 RisingMCAS 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.
Platform
The Mighty
One of the largest chronic illness storytelling and community platforms, with dedicated communities for POTS, EDS, MCAS, migraine, ME/CFS, and chronic pain. Millions of readers who understand invisible illness because they live it.
Best for: lived experience, feeling understood, finding your people. As with all communities, verify medical information with your physician.
Visit The Mighty
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.
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 listMaintz 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 PubMedThe 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 siteSalt 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.
Seen. Symptom Tracker
Seen.'s own tracking tool, built specifically for people navigating POTS, MCAS, HSD, and chronic pain as a cluster. Designed to capture the interactions between conditions, generate physician-ready reports, and work from your phone without an app store download. $1.99 a month.
Open the TrackerPaid
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 ChatDysPaid
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 VisibleBearable
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 BearableMigraine 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.
Seen. Research Library
A curated collection of peer-reviewed studies on the connections between POTS, MCAS, HSD, migraine, and chronic pain. Organized by condition and topic, with institutional affiliations and direct links to full-text articles. Built for patients who want to understand the science behind their conditions and share it with their care team. It closes with Leading Researchers in This Field, the clinicians and scientists behind this work, each linked to their own page.
Browse the Research LibraryRoot 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 podcastDr. Theo's Suggestions (Dr. Theoharis Theoharides)
Dr. Theoharides is one of the most cited mast cell researchers in the world, with a publication library on his site sorted by topic (mast cells, brain health, long COVID, luteolin). This page collects his downloadable suggestion sheets for mast cell activation, post-COVID symptoms, bladder pain, and allergies. He also sells the supplements he writes about through a separate company, which is worth holding in mind as you read; the science library and the store are two different things.
Read Dr. Theo's suggestionsMastAttack (Lisa Klimas)
A long-running educational site by a scientist who lives with mast cell disease. Plain-language explanations of mediators, testing, medication classes, and daily management, including the widely shared "MastAttack 107" series answering the questions patients ask most. Written for patients, read by clinicians.
Visit MastAttackThe Road to 2026: New EDS and HSD Diagnostic Criteria (The Ehlers-Danlos Society)
For the first time since 2017, the diagnostic criteria for every type of Ehlers-Danlos syndrome and for hypermobility spectrum disorders are being revised. The new framework publishes December 1, 2026, in the American Journal of Medical Genetics, with care and management pathways to follow in March 2027. This page tracks the process and what will change. If you are seeking a diagnosis now, it is worth knowing the criteria are about to move.
Follow the updateThe POTScast (Standing Up to POTS)
The most widely listened-to podcast dedicated to POTS and dysautonomia, hosted by patient advocate Jill Brook. Over 200 episodes covering treatments, research, daily life, and specialist interviews. The Mast Cell Matters sub-series, guest-hosted by Dr. Tania Dempsey, focuses specifically on MCAS and its connection to POTS. An extraordinary resource for patients at any stage of diagnosis.
Listen to the POTScastBendy Bodies with Dr. Linda Bluestein (The Hypermobility MD)
A podcast hosted by Dr. Linda Bluestein, a Mayo Clinic-trained anesthesiologist and pain specialist who lives with hEDS. Covers the intersection of hypermobility, pain, autonomic dysfunction, and mast cell activation with a depth and clinical rigor that few resources match. Guests include leading researchers and clinicians across all three conditions. Particularly valuable for patients whose pain remains unexplained or undertreated.
Listen to Bendy BodiesPOTS 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 guideME/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 primerDysautonomia 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 brochuresHypermobile 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 resourceBateman 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 libraryThe Mechanical Basis of ME/CFS (Jeff Wood)
A patient-authored deep dive into the structural and mechanical mechanisms that may underlie ME/CFS, with particular focus on craniocervical instability (CCI) and atlantoaxial instability (AAI) as potential drivers of autonomic dysfunction and fatigue. Written by Jeff Wood, who navigated these conditions firsthand. Dense, research-informed, and not light reading, but uniquely valuable for patients and clinicians exploring structural contributions that standard workups often miss. One of the most serious patient-produced resources in this space.
Read the siteHealth Rising
Cort Johnson's independent journalism on ME/CFS, fibromyalgia, and Long COVID: over 1,000 articles covering research findings, treatment developments, and patient tools in depth. The most-read independent source in this space, and one of the few writers who reads the studies before reporting them. High signal, no gloss.
Visit Health RisingMigraine World Summit
The largest virtual patient event in the world for migraine and headache disorders, now in its tenth year. Annual expert interviews with leading researchers and clinicians, plus a maintained library of resources and tools. An efficient way to hear directly from the people doing the research.
Visit the Summit
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.
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 RECOVERClinicalTrials.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 trialsClinicalTrials.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
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
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
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.
Mast Cells United: A Holistic Approach to Mast Cell Activation Syndrome
The most comprehensive patient-oriented resource on MCAS available: 542 pages drawing on over 1,200 academic articles and dozens of interviews with specialists in allergy, immunology, hematology, functional medicine, gastroenterology, and more. Covers diagnostic considerations, comorbid conditions (including EDS and POTS), root causes, dietary strategies, and holistic healing approaches. Where Afrin's book is mechanistic and clinical, this one meets patients where they live.
Best for: Patients seeking a thorough, practical companion for the full MCAS journey, from diagnosis through long-term management.
The Trifecta Passport: Tools for Mast Cell Activation Syndrome, Postural Orthostatic Tachycardia Syndrome and Ehlers-Danlos Syndrome
The first book to address MCAS, POTS, and EDS as a unit. Includes an overview of all three conditions, nine chapters of holistic healing resources, case studies, and a 20-page patient workbook for building a customized management plan. Shorter and more action-oriented than Mast Cells United.
Best for: Patients navigating the overlap of two or more conditions who want a structured starting point and a workbook they can use with their care team.
The Migraine Brain
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
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
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.