Art by Miss Diagnoses. Updated: 7/1/19
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)
- Social Service Connections for Lyme Disease
- Sleepy Girl Guide Social Security Disability
- SSI Disability for Children
- Ehlers-Danlos: Applying for Disability Support Group
- Applying for Disability Safe Space
- LTD and Worker’s Comp
- Facebook Housing Groups for People with Disabilities
- Disability Support & Self-Advocacy in HUD Housing
HOMEBOUND OR BEDRIDDEN
- Living From Bed – Safe space for everyone mostly or completely bedridden
- 25% of ME: Support Group for Severe CFS/ME – Welcomes caregivers as well
MYALGIC ENCEPHALOMYELITIS AND CHRONIC FATIGUE SYNDROME
- What’s ME? How Do I Know if I Have ME? (information)
- Fellow Travelers, Support and Chat
- CFS & ME Self Help
- North Carolina and Ohio ME/FM Support (welcomes members everywhere)
- Race to Solve ME/CFS
- #MEAction Living with ME Support Group
- Myalgic Encephalomyelitis Global
- Myalgic Encephalomyelitis and Chronic Fatigue Syndrome
- Health Rising Forums – For ME, CFS, and Fibromyalgia
- Chronic Fatigue Coach
- LGBTQ ME/CFS Support Lounge
- ME/CFS for the Slightly Irreverent (full, accepts new members slowly)
- ME/CFS Music Club to Aid Healing and Recovery
- Location Effects in Caribbean Islands & Worldwide (effects of location on ME/CFS)
- Adult Survivors of Childhood Onset ME/CFS (became ill before age 12, now adults)
ME AND CFS EMAIL NEWSLETTERS
CHRONIC LYME DISEASE
- What’s Chronic Lyme? Do I have Chronic Lyme Disease?
- Women’s Lyme Disease Support Group
- Western US Lyme
- Wisconsin/Illinois Lyme
- Lyme Tribe
- Lyme Disease Support and Wellness
- Progressive MSIDs Community (formerly “Lymies for Bernie”)
- LymeGuide Facebook Page
- Miss Diagnoses
- What’s Mold Avoidance? Would Mold Avoidance Help Me?
- Mold Avoiders
- Mold & Chemical Sensitivity Lifestyle
- Surviving Toxic Mold (Natural Remedies Only)
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. Extendable skin.
- 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 (perfumes, air fresheners, cleaning products, etc)
- 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
STATE PROGRAMS PROVIDING HOME AIDES
- Washington State
- New York
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.
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
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.”
US SUPPORT GROUPS
- Seattle Spoonie Collective
- Oregon Chronic Illness
- Good North American Doctors for POTS/OI/EDS/ME/CFS/Chiari/MCAD/RA/GP/Hash
ME AND CFS RESOURCES
- Excellent articles. Stay informed on ME / CFS: Health Rising Articles
- Treatment for ME / CFS: Health Rising Treatment Resources
- Grassroots, International Network of People with ME: #MEAction
- Advocacy and information on ME: MEAdvocacy
- Art from Bed – Poetry, Art, Performance. ME: #Bedfest Website
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
- But You Don’t Look Sick
- ME Research and News
- Hunter Hopkins Center – Treating FM and CFS
A FEW GREAT BLOGS
- 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
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