Art by Elizabeth D’Angelo
Self-Advocacy and Self-Care Toolkit for people with Myalgic Encephalomyelitis (Sometimes called “Chronic Fatigue Syndrome”).
WHY SAVE SPOONS
🌷 What’s ME? How Do I Know if I Have ME?
🌷 What’s a Spoon? What’s a Spoonie?
🌷 Potential Dangers of Exercise and Activity for People with ME and CFS
🌷 Doctor Montoya’s Instructions: Please Do Not Overexert Yourself
🌷 How to Get Others to Understand That Activity Makes You Worse
HOW TO SAVE SPOONS
🌷 Lenka and Susan Do Literally Nothing
🌷 How Do I Know If I Need a Wheelchair?
🌷 How Do I Know If I Need to Apply for Home Care?
🌷 What Should I Do? Change Jobs? Work Part Time? Apply for Disability?
🌷 “I’m Not Applying Now, Because I’m Not in Crisis Yet”
TESTING AND DIAGNOSIS
🌷 How Can I Get Diagnosed with ME or CFS?
🌷 How to Get Tested for ME and CFS
🌷 What Tests to Get While Applying for Disability (US)
🌷 Neuropsychological Testing for Chronic Fatigue Syndrome
🌷 How I FINALLY Got a Doctor to Diagnose Me with ME/CFS
🌷 Great Facebook Groups to Find Support
🌷 Health Rising Forums: Finding Answers for ME/CFS
🌷 #MEAction: International Network of ME Patients
TOOLS & TIPS
🌷 Colleen’s Toolbox and Toybox for People with ME
🌷 Ricky’s Geeky Tools (from bed!)
🌷 Ricky’s Instructions for Caregivers
🌷 Lilac’s Guide to Increasing Home Care Hours
🌷 Margaret’s Guide to Increasing Home Care Hours
🌷 Rebecca’s System for Organizing Medical Appointments
🌷 How I Got Approved for Home Aides
🌷 How I Got Approved for Disability
🌷 How I Get Disability Assistance at Events
🌷 How I Get Mail Delivered to My Doorstep
🌷 How I Got Disability Accommodations in Housing
🌷 Lupine Gets an Electric Wheelchair
APPLYING FOR DISABILITY IN THE US
🌷 Please Read If There is Any Chance You Will Ever Apply…
🌷 How to Apply for Social Security Disability with ME
🌷 How to Apply for Employer Disability with ME
🌷 Doctors People Found Helpful with Disability Applications
SERVICES IN THE US
- Disability Parking
- Wheelchairs & Scooters (With Insurance)
- Wheelchairs & Scooters (Without Insurance)
- Grocery Delivery
- Medical Equipment
- Home Nurses and Doctors
- Caregivers & Home Aides
- Social Change
- Emotional Support Animals
- Affordable Disability Housing
- Workplace Accommodations
- Home Modifications
- Homebound or Bedbound
- Apply from Home (apply from bed!)
SUPER HELPFUL DOCUMENTS
- Colleen’s Suggestion Sheet to Give People Who Visit You
- Workwell Foundation Letter Opposing Exercise Therapy
- International Consensus Criteria: Assessment and Diagnosis
- #MEAction Fact Sheet: Diagnosis and Management of ME
- Post Exertional Malaise Avoidance Toolkit
- Doctor Lapp’s Amazing Chronic Fatigue Syndrome Disability Letter
- Dr. Rowe’s Disability Letter for POTs, Migraines. ME and CFS
- Dr. Fein’s Medical Summary for Chronic Fatigue Syndrome and Lyme Disease
- Dr. Lange’s Neuropsychological Report for Chronic Fatigue Syndrome
- Zinnia’s Super Great Chronic Fatigue Syndrome Letter
- Sample CPET Tests for Chronic Fatigue Syndrome
- ME/CFS Treatment Resources
- HIP’s Roadmap for Testing and Treatment.
- Medical Tests for ME and CFS
- MEAction list of doctors for ME
- Colleen Steckel’s list of doctors for ME
- Health Rising
- National Alliance for Myalgic Encephalomyelitis
- Hummingbird Foundation
This blog was created by people with ME/CFS. We hope you find something here that helps. 💗💗💗,
Alan & Bingo the Alter-Ego Basset Hound
Rebecca The Artist Nerd Do-Gooder
Ricky The Geek-Creative-Disabled-Bedridden-Internet-Citizen
Basil & the Delphinium Maneuver
Lenka and Susan Doing Literally Nothing
7 thoughts on “How To Save Spoons: A Self-Advocacy Guide for ME/CFS”
My son is 3 he has autism his review is every 7 years I was wondering will he get the short mailer or the long form can you please email
Hope something here helps🌷🌺 💗
I have just wandered into your world of information. (Following info on SNAP/EBT re grocery delivery) I’m dazed and delighted. So looking forward to perusing the treasures. Thanks for all the time & effort I can already see you’ve put into it.
Thank you dale 🏵️ 🌼💛
I was so impressed at this resource – this is AMAZING!!! I refer to it all the time.
Thanks for sharing! I hope everyone bookmarks this so they can reference it. I know it has taken a LOT of time and energy to compile this information. On behalf of the entire community…thank you!!