Find your people. A super long list of wonderful Facebook groups for ME, CFS, Lyme, MCAD, POTS, Environmental Illness, and related conditions. If you know more good groups that got left off this list (sorry!) please comment below with a link.
PROGRAMS AND SERVICES (US)
- Ehlers-Danlos: Applying for Disability Support Group
- Applying for Disability Safe Space
- Social Security Disability Guidance for SSI & SSDI
- Workplace Disability: LTD and Worker’s Comp
- Social Service Connections for Lyme Disease
- Low Income Relief
- Ask Disabled Folks
- Housing Groups for People with Disabilities
- Disability Support & Self-Advocacy in HUD Housing (Family welcome)
STATE PROGRAMS PROVIDING HOME AIDES
- Washington State
- New York
HOMEBOUND OR BEDRIDDEN
- 25% of ME: Support Group for Severe CFS/ME – Caregivers welcome
- Living From Bed – Safe space for everyone mostly or completely bedridden
ME AND CFS
For Myalgic Encephalomyelitis (Sometimes called “Chronic Fatigue Syndrome”) There were so many great groups, we had to create a separate page to list them all!
CHRONIC LYME DISEASE
- “What’s Chronic Lyme? Do I have Chronic Lyme?”
- Women’s Lyme Disease Support Group
- Western US Lyme
- Wisconsin/Illinois Lyme
- Lyme Tribe
- Lyme Disease Support and Wellness
- Progressive MSIDs Community
- LymeGuide Facebook Page
- Miss Diagnoses
- “What’s Mold Avoidance? Would it Help Me?”
- Mold Avoiders
- Mold & Chemical Sensitivity Lifestyle
- Surviving Toxic Mold (Natural Remedies)
MORE FUN THINGS YOU MIGHT HAVE!
- Candida – Fungal overgrowth. Sugar cravings, brain fog, fatigue, digestive problems, itching, yeast and fungal infections, etc, etc.
- Mast Cell Activation Disorder – Causes severe reactions to many foods and other substances
- POTS – Heart rate rising when standing. Can cause dizziness, fainting, and more!
- SIBO – Causes bloating, digestive problems and other fun things.
- Chronic Epstein Barr Virus
- Ehler Danlos Syndrome (EDS) – Loose or hyper-mobile joints.
- Mitochondrial Dysfunction – Understanding Mitochondrial Nutrients
- Electromagnetic Hypersensitivity – Symptoms from electricity and wireless
- Mercury Toxicity – Caused by dental work or other exposure
- MCS/TILT – Multiple Chemical Sensitivity & Toxicant-Induced Loss of Tolerance. Symptoms from common chemical products.
- Liver / Gallbladder Congestion – Liver/gallbladder flush group
- Neurotoxicity – “Support Group for those poisoned by medications, paints, pesticides, mold, vaccines, Lyme, chemicals, etc”
A FEW GREAT WEBSITES
- Chronic Illness & Disability Resources: Spoonie Living
- Low income tips and resources: Low Income Relief
Chronic Readers – For people who love to read and struggle with chronic illness.
Pacing with a Heart Monitor – Pacing is a technique that many people with ME or CFS find helpful. This page explains pacing and also includes links to Facebook groups about pacing.
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.
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.”
Better Together– Together we can learn what works to improve our health. We may use avoidance (of toxic mold, microorganisms, allergens, or manmade chemicals), environmental modification, biohacking, medications, supplements, or emotional or spiritual interventions.
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.
#MEAction groups – Connect with other ME advocates. Share information, organizing and ideas for social justice and health equality. Facebook groups around the world.
Disability Advocates – ADAPT is an amazing network of people with disabilities who organize and advocate for disability rights. ADAPT National Facebook Page. Local facebook groups: Texas ADAPT, Chicago ADAPT, Michigan ADAPT
US SUPPORT GROUPS
- Seattle Spoonie Collective
- Oregon Chronic Illness
- Good North American Doctors for POTS/OI/EDS/ME/CFS/Chiari/MCAD/RA/GP/Hash
Facebook Groups by Rosie Fusco for Lymies:
- LymeBrary: Book Share for Lyme & Invisible Illnesses
- LymeforChange: Share Lyme Awareness Projects
- LymeAid: Share goods and services with no charge
- Turn Green for Lyme: Lyme Overlays for Facebook Photos
- Hand Up for Lyme: Raises $ and donates gift cards and care packages to Lymies in dire need of basics
- Artists Give a Hand Up for Lyme – Artists/crafters showcase their wares. Pledge back to Hand Up for Lyme.
- Lyme Angels – Donate, share or find free stuff Lymies need.
A FEW GREAT FACEBOOK PAGES
- Divinely Differently Abled
- Miss Diagnoses
- Lori Madeira | ME/CFS Advocate
- But You Don’t Look Sick
- ME Research and News
A FEW GREAT BLOGS
- Miss Diagnoses – Life with Multiple Ailments
- Rebecca Weger: Artist Nerd Do-Gooder
- 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
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