This is a collection of resources to support your journey as a clinician and/or patient. I will attempt to make this page attractive at some point. Links are to Amazon for ease. I do not get any kickbacks or anything. Please feel free not support Jeff’s evil empire. Booktopia has them all as well. I will get around to changing it.

Useful stuff | Diagnosis & Screening Tools | Peak Bodies | Finding your team | Trials | Podcasts

Useful articles/papers/websites/books

My Stuff

• These are my own summaries and ramblings for medical professionals and do not constitute medical advice.

• Clinicians’ Perioperative management guide for hypermobile, MCAS and POTS patients by Dr Jason Lam and Sharon Hennessey. As seen on the Mayo Clinic blog. Patient version at Not Just Bendy. - useful for pre/periop planning for surgery.

• My zotero library. It has all the (lack of) organisation you would expect from a chaos goblin

General handyness

• Dr Megan Thomas’ resource page

Hypermobility

• A GP Guide to hypermobile EDS by Dr Megan Thomas

• AGA Clinical Practice Update on GI Manifestations and Autonomic or Immune Dysfunction in Hypermobile Ehlers-Danlos Syndrome: Expert Review

• Disjointed | Navigating the Diagnosis and Management of hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders by Diana Jovin

• Symptomatic: The Symptom-Based Handbook for Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders by Francomano

POTS/Orthostatic syndromes

• Canadian Cardiovascular Society Position Statement on Postural Orthostatic Tachycardia Syndrome (POTS) and Related Disorders of Chronic Orthostatic Intolerance Diagnosis and Screening Tools

• Postural Orthostatic Tachycardia Syndrome: A State-of-the-Art Review. Lau et al. Heart, lung and circulation 2026

• Australian POTS Foundation Resource Hub

• Tired all the time: Defeating dysautonomia - a practical guid for patients and families to managing POTS and related conditions. by Dr Brendan Hanrahan

MCAS

• “Diagnosis of mast cell activation syndrome: a global “consensus-2”” Afrin et al Diagnosis 2020 Vol 8 Issue 2

• “Pharmacological treatment options for mast cell activation disease” Molderings et al Naunyn Schmiedebergs Arch Pharmacol. 2016

PANS and PANDAS

• PANDAS physicians Network - collection of resources for the diagnosis and treatment of PANS/PANDAS

 Diagnosis and Screening Tools

hEDS and HSD

• 2017 Diagnostic criteria for Hypermobile Ehlers Danlos Syndrome for 18yrs+ original | annotated/cheat sheet version

• 2023 EDS Society Paediatric Framework for paediatric hypermobility

• The Spider - a tool for measuring and tracking multi-systemic symptoms

• EDS Society GP toolkit

• EDS Society App

POTS

• Malmo POTS questionnaire - a clinical questionnaire for POTS

• NASA Lean Test - a clinical diagnostic tool to confirm orthostatic syndromes. (POTS, orthostatic hypotension etc)

• Normative data for the 10-min lean test in adults without orthostatic intolerance. Iftekhar et al. Front Neuro 2025

MCAS

• Mast Cell Mediator Release Syndrome Questionnaire - a clinical questionnaire that can support the diagnosis of MCAS

 Peak Bodies

EDS / HSD

• Ehlers-Danlos Society

• Ehlers-Danlos Australia​

POTS / DYSAUTONOMIA

• Australian POTS Foundation

• Dysautonomia International

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MCAS

• The Australasian Mastocytosis Society (TAMS) 

• Mast Cell Action

CONNECTIVE TISSUE DISORDERS​

• Connective Tissue Disorder Network Australia (CTDNA)

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ME/CFS & LONG COVID

• Emerge Australia

CFS Leak

• Spinal CFS Leak Australia

 Finding your care team

EDS/HSD

• EDS society health professionals directory - directory of self-identified practitioners with interest in Hypermobility
  EDS Society Core Networks - EDS Society vetted networks of clinicians
  

POTS / DYSAUTONOMIA

• Australian POTS Foundation Clinician Directory

• Dysautonomia International Physician Directory
  

MCAS

• The Australasian Mastocytosis Society (TAMS)
  

CFS LEAK

• Spinal CFS Leak Australia Clinician Directory

 Trials & Research

I’ll try and keep up but I will fail miserably - there are always trials popping up. The peak bodies will likely have more up to date stuff within their own field.

ME/CFS

Study ME - a patient registry for research. Sign up to register your interest in participating in trials
TRI-ME (Trimetazidine in ME)
Tracking Hormones Fluctuations in ME/CFS (MELLOW)

 Podcasts

• The Neurodivergent Woman
  All episodes great. of particular interest: EDS, POTS and MCAS with Dr Megan Thomas and Bianca Comfort S7, E8
  Spotify : Apple

• Bendy Bodies with Dr Linda Bluestein

• inVisible by Dr Ashton Wilson

• Mast Cell Matters by Dr Tania Dempsey