How To Save Spoons: A Self-Advocacy Guide for ME/CFS

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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

🌷 How to Practice Pacing

🌷 How Pacing Changed My Life

🌷 How to Do Less

🌷 Lenka and Susan Do Literally Nothing

🌷 How to Rest Your Brain

🌷 Make Airports Easier

🌷 Make Doctor’s Visits Easier

BIG DECISIONS

🌷 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)

🌷 How to Get a CPET (maybe)

🌷 Neuropsychological Testing for Chronic Fatigue Syndrome

🌷 How I FINALLY Got a Doctor to Diagnose Me with ME/CFS

FIND SUPPORT

🌷 Great Facebook Groups to Find Support

🌷 Groups Just For ME/CFS

🌷 Health Rising Forums: Finding Answers for ME/CFS

🌷 #MEAction: International Network of ME Patients

🌷 How To Make Friends Online

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

🌷 Lilac Pees in Bed

SUCCESS STORIES

🌷 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

🌷 Sunflower Goes on a Trip

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

SUPER HELPFUL DOCUMENTS

DOCTOR’S LETTERS

TREATMENT RESOURCES

ORGANIZATIONS

This blog was created by people with ME/CFS. We hope you find something here that helps. 💗💗💗,

7 thoughts on “How To Save Spoons: A Self-Advocacy Guide for ME/CFS”

  1. 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

    Like

  2. 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.

    Like

  4. 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!!

    Like

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