MECFS Resources

This page is open to suggestions for further resources. If you have a resource for MECFS patients please message me on insta or email me at sammylincroftassistant@gmail.com to have it listed here. All resources are freely accessible.

MECFS What Your Friends & Family Need To Know PDF

MECFS How Your Friends & Family Can Help PDF

What ME/CFS Is and Isn’t PDF

What Severe ME Is and Isn’t PDF

In Case Of Emergency Customizable and Printable Mini Pamphlet (Download or copy to edit)

Patient Advocacy Groups

Financial Support and Information

Education

For Your Doctor

Mental Health

If you need fast help please see my general mental health resource guide here. Or use the THRIVE non-carceral resource list here. ME / chronic illness specific mental health resources listed below.

Research Teams

Severe ME Specific

Severe ME Blogs

Reasearch Starting Points / Blogs

Medication Evidence

Note: I do not endorse any of these therapies as curative for ME. Please note that Mayo Clinic and NICE do not endorse any medications as of Nov 2021. However I believe these are the most evidence supported medications at the moment. The studies linked here are to provide you with evidence to asses whether you believe a treatment could help you and bring to your doctor if you choose to pursue treatment.

WARNING: GET AKA GRADED EXCERCISE THERAPY* AND CBT OR COGNITIVE BEHAVIORAL THERAPY* ARE NOT RECOMMENED FOR MECFS.

In addition to treatments labeled GET and CBT also avoid any treatment plan with continued increases in movement regardless of patient feedback (sometimes labeled pacing!l !,# avoid any psychotherapy that does not accept the biological origin of ME / believe therapy alone can cure ME.

Please see NICE guidelines, Mayo Clinic Guidelines and Workwell Foundation above.

Social Media Accounts

  • Instagrams - @meactnet @whitneydafoe @solve_cfs_ @movementwithme @its_whitney_witch @paused_me @healthymadel @envirobrite @jiji.w.wong @naomi.just.living.life @the20somethingspoonie @jayletay @theunchargeables @katie_andm.e @living.with.me.cfs @pacingpixie @teapartyform.e @gigi_vs_the_galaxy @justagalwithme @ellie_ology @m.e.kimberly @thehomingpillow @bedheadplantifed @chronically.exhausted.pidgeon @chronic_luna @thingsmayosays (I'm definitely missing people! Message me if I forgot you)

Facebook Groups

  • MECFS: Below the Threshold (Heart rate monitoring support)

  • Race to Solve ME/CFS

  • Good Australian Doctors for ME/CFS/FM/EDS/POTS/Hashimotos

  • Good North American Doctors for POTS/OI/EDS/ME/cfs/Chiari/MCAD/Tethrd Cord

  • 25% of ME support group for severe CFS/ME

  • ME/CFS People with something to sell

  • ME-I Chat Rooms

  • People with MECFS who play games. Myalgic Encephalomyelitis game community. (Note, I admin this group)