A bunch of great Facebook groups. If you know more good groups that got left off this list (sorry!) please comment below with a link.
The conditions listed below can share similar symptoms and sometimes overlap. If you have been diagnosed with one of these conditions, you might find some of the others worth looking into.
If you don’t know what some of the things on this list are, here’s a very brief and woefully inadequate summary:
- Myalgic Encephalomyelitis – Sometimes called “Chronic Fatigue Syndrome.” How Do I Know if I Have ME?
- POTS – Heart rate rising when standing. Can cause dizziness, fainting, and more!
- SIBO – Bacterial overgrowth. Causes digestive problems and other fun things.
- Mast Cell Activation – Causes severe reactions to many foods and other substances
- Ehler Danlos Syndrome – Loose or hyper-mobile joints. Extendable skin.
- Fibromyalgia – Causes widespread pain
- Multiple Chemical Sensitivities – Symptoms from common chemical products (perfumes, air fresheners, cleaning products, etc)
- Candida – Fungal overgrowth. Sugar cravings, brain fog, fatigue, digestive problems, itching, yeast and fungal infections, etc, etc.
- Mold Exposure – Some people discover that mold avoidance magically makes many of their symptoms better.
- Chronic Lyme Disease – Some people discover that Lyme is the underlying cause of many other problems. Do you have Lyme Disease?
- Electromagnetic Hypersensitivity – Symptoms from electricity and wireless
- Mercury Toxicity – Caused by dental work or other exposure
Disability & Services
- Social Service Connections for Lyme Disease (US)
- Sleepy Girl Guide Social Security Disability (US)
- Affordable Housing / Section 8 for People with Disabilities (US)
ME and CFS (Support)
- Race to Solve ME/CFS
- #MEAction Living with ME Support Group
- FELLOW TRAVELERS, Support and Chat
- CFS & ME Self Help
- Myalgic Encephalomyelitis Global
- Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
- Southeastern Michigan CFS/ME/Fibro Support
- North Carolina and Ohio ME/FM Support (welcomes members everywhere)
- 25% of ME: Support Group for Severe CFS/ME (Welcomes caregivers as well)
- CFS/ME/Fibro Bedridden Support
- Health Rising Forums – For ME, CFS, and Fibromyalgia
- Chronic Fatigue Coach
- LGBTQ ME/CFS Support Lounge
- ME/CFS for the Slightly Irreverent (full so accepts new members slowly)
- ME/CFS Music Club to Aid Healing and Recovery
ME and CFS (Pacing with Heart Monitor)
- What’s Pacing?
- ME/CFS – Pacing with a Heart Monitor
- ME/CFS – Below the Threshold
- ME – Pacing mit Pulsuhr (German)
ME and CFS (Advocacy)
- Women’s Lyme Disease Support Group
- Western US Lyme
- Wisconsin/Illinois Lyme
- Lyme Tribe
- Progressive MSIDs Community (formerly “Lymies for Bernie”)
- LymeGuide Facebook Page – We aim to be the comprehensive guide to help you travel Lyme with least trevail.
More Fun Things You Might Have!
- Mast Cell Activation
- Chronic Epstein Barr Virus
- Multiple Chemical Sensitivity
- Ehler Danlos Syndrome (EDS)
- Mitochondrial Dysfunction (Understanding Mitochondrial Nutrients)
- Electromagnetic Hypersensitivity
- Mercury Toxicity
- Liver / Gallbladder Congestion (Liver/gallbladder flush group)
- Neurotoxicity (“Support Group for those poisoned by medications, paints, pesticides, mold, vaccines, Lyme, chemicals, etc”)
How to Get On
Living From Bed – A safe space for everyone who’s mostly or completely bedridden.
Undiagnosed Warrior Support Group – A place for patients that are searching for a medical diagnosis to find support and a place to call their medical home. We invite all members to share their knowledge, research, and experiences with one another in hopes that it will help each of us to finally receive the answers we have been longing for.
No Nonsense Invisible Illness – “Support Without All the Woo and Woe.” This is a group for people who have Invisible Illnesses of any kind to find information and a community without nonsense.
The Wounded Healer. Heart Centered Spiritual Spoonie – a positive & high vibe group for everything New Age spirituality, with the only exception being there is no New Age Illness Shaming or Ableism allowed.
Natural Healing for Chronic Illness – PROACTIVE people seeking to better their health through natural means wherever possible.
Housing for Spoonies – Facebook groups for people with chronic illness and disabilities looking to find roommates or improve their housing scene.
For People Who First Got Ill Early in Life – All The Beautiful People is a secret Facebook support and social group for those who first got ill earlier in life. To join, please send a message to Sandy Walker. Sandy notes: “Earlier in life = Young adulthood (which goes up to age 40) and earlier. We’re not super strict with the age rules…we just recognize that getting ill during the years when you’re supposed to be building your life by going to school, starting a career and family, etc, really impacts the your life, no matter how old you may be now.”
In the US
- Seattle Spoonie Collective
- Oregon Chronic Illness
- Good North American Doctors for POTS/OI/EDS/ME/CFS/Chiari/MCAD/RA/GP/Hash
- Ask Disabled Folks – For Disabled Folks
- Ask Disabled Folks – For relatives/friends/allies
- #BedFest: ME & CFS Poets, Artists and Creative People
- Turn Green for Lyme: Lyme Overlays for Facebook Photos
- LymeBrary: Book Share for Lyme & Invisible Illnesses
- LymeforChange: Share Lyme Awareness Projects
- LymeAid: Share goods and services with no charge
A Few Great Websites
- Chronic Illness & Disability Resources: Spoonie Living
- Natural cures and home remedies: EarthClinic
- Forums. Excellent articles. ME / CFS / FM : Health Rising
- Advocacy, Activism, Millions Missing, BedFest, Unrest: #MEAction
- Advocacy and information on ME: MEAdvocacy
- Art from Bed – Poetry, Art, Performance. ME: #Bedfest Website
- Low income tips and resources: Low Income Relief
- Divinely Differently Abled
- Miss Diagnoses
- But You Don’t Look Sick
- ME Research and News
- Hunter Hopkins Center – Treating FM and CFS
- Miss Diagnoses – Life with Multiple Ailments
- Not Done Living – Geek, Creative, Disabled, Internet, Bedridden, Citizen
- Spoonie Living – Chronic Illness and Disability Resources
- Health as a Human Right
- The Sick and the Dating – Looking for Love Between Hospital Stays
- Pain Pals – My Family and Friends Living with Me… and Chronic Illness
- Seriously “Sensitive” to Pollution
- Divinely Differently Abled: chronic illness, chronic pain, money saving, recovery, human rights, animal welfare, and Jesus
- As Well as I Can Be
- Laura’s Pen – Life with Chronic Illness
- Healing CFSME – Helping to Heal Within Illness and Move Towards Health
- Portland Wellness Coach
- Kai Elliot: Resilience Coach
- Undiagnosed Warrior Website
- A Journey in Lyme
- Practicing Spirituality and Healing
- Mommy is a Pothead: Chronicles of a Chronically Ill Jersey Girl
Updated February 2018. Please let us know if any links on this page stop working. If you found this page helpful, please share it with others by pressing one of these magic little buttons: