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 Severe ME Is and Isn’t PDF
In Case Of Emergency Customizable and Printable Mini Pamphlet (Download or copy to edit)
Patient Advocacy Groups
Emerge (Australia)
MEAction (Global)
ME Association (UK)
World ME Alliance (Global)
Long Covid Alliance (USA)
MECFS Portal (Germany)
ME International (Global)
Doctors with ME (Global)
Financial Support and Information
Mutual Aid For ME Mutual aid group dedicates to ME/CFS and Long Covid
Disability Secrets (US financial and legal advice)
How To Get On Full in-depth guides to surviving in America with moderate-severe MECFS.
How To Find Financial Assistance For Chronic Illness List of funds and charities (USA)
Emerge Financial Literacy Guides (Australia)
Education
For Your Doctor
Pretreatment ME Clinician Statement with attached resources for learning about ME. Send this to your doctor first if you want to avoid meeting with any clinicians who do not believe ME is a biological illness. Includes the first 4 following resources.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials Of Diagnosis and Management
ME International Patient Resources and ICC Primer (Multilingual options)
Severe ME Letter For Medical Professionals
Physiotherapy Guidance
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.
US Chronic Illness Hotline
Text “care" to 202-596-6520
UK CIFSA Support Line
Call 01625-462-286
ME Connect Helpline
Call 0344-576-5326
Research Teams
Open Medicine Foundation - Metabolic Trap Hypothesis and More
Solve ME - Creating a Genetic Bank
Bateman Horne - Open Studies Testing Treatments
DecodeME - Genetic Testing (UK)
Workwell Foundation - CPET Testing
Severe ME Specific
Hummingbird 3pt ability scale (Note the main HFME website is currently unavailable and I am hosting a pdf of the ability scale here. Some pages can be accessed using the Wayback Machine)
Health Care Responsibility and Compassion-Visiting The Housebound Patient Severely Affected by MECFS
Severe ME Blogs
Reasearch Starting Points / Blogs
NANDS Research Roadmap for ME/CFS (overview of current ME research and goals as of 2024)
MEpedia Basic info and study links
Health Rising Amazing evidence summaries
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.
LDN
PEA (for fibromyalgia)
CBD / THC / Medical Cannabis (please consult local laws)
NADH and CoQ10
Nimodipine
B12 Injections
IV Saline (POTS)
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)