26 Great Facebook Groups (Plus a Few Other Things)

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Artwork: Robin Mead

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 

ME and CFS (Support)

ME and CFS (Pacing with Heart Monitor)

ME and CFS (Advocacy)

Lyme

Toxic Mold 

More Fun Things You Might Have!

How to Get On

Special Pops

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 

Disability Activists 

Interesting Projects

Sharing 

Humor/Lighthearted

A Few Great Websites 

Facebook Pages

Great Blogs

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: 

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