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

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

Patient Advocacy Groups

• Emerge (Australia)

• MEAction (Global)

• ME Association (UK)

• Massachusetts ME Association (USA)

• Long Covid Alliance (USA)

• MECFS Portal (Germany)

• ME International (Global)

• Doctors with ME (Global)

Financial Support and Information

• AMMES Financial Crisis Fund (USA)

• 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

• MECFS Crash Guidebook

• Bateman Horne Youtube Guidance For Living With MECFS

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 

• NICE 2021 Guidelines

• ICC Diagnostic Criteria

• US 2021 Clinician Coalition MECFS Treatment Recommendations 

• ICC Diagnostic Form With Printout For Doctor

• Mayo Clinic 2020 Guidelines

• Medical Considerations Letter (for ED/A&E)

• ME International Patient Resources and ICC Primer (Multilingual options)

• PEM Primer by Jennifer Spotila

• Severe ME Letter For Medical Professionals

  Physiotherapy Guidance

• Overview for PT providers from Physiopedia

• Workwell Foundation Educational Materials

• Stop GET Letter for providers

• ME South Australia PEM description

• Physios for ME (for PTs)

• Complete HR Pacing Guide (Pay as you are able)

• Visible App for MECFS & Long Covid

Mental Health

Please see my general mental health resource guide here. ME specific mental health resources listed below.

• For Psychiatrists 

• Bateman Horne Severe Chronic Illness Support Group

• Surviving Low Mental Health Days With ME Toolkit 

• Severe ME Reasons To Live

• 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

• Stonebird

• Hummingbird and 3pt severity scale

• Caring For Patients With Severe or Very Severe ME 

• Health Care Responsibility and Compassion-Visiting The Housebound Patient Severely Affected by MECFS

• Transportation Guide for Severe Patients Requiring Gurneys

• 25% ME Group

• ME International Severe ME Info

• Life Threatening Malnutrition In Severe and Very Severe ME

• Patient Memorial List

• Severe ME Bedbound Activities Masterlist

• Communication Cards

• Door Warning Poster For Very Severe Patients

Severe ME Blogs

• Whitney Dafoe Blog

• Galen Warden Blog

• Katie Living With ME 

Reasearch Starting Points / Blogs

• How To Read And Understand A Scientific Paper

• MEpedia Basic info and study links

• Health Rising Amazing evidence summaries

• The Virology Blog

• CFS ME Navigator

• Medical Matters (Q&A) By ME Association 

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

  • Low-dose naltrexone in the treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

  • Health Rising Overview

  • Treatment Information Sheet w/ Evidence & Sources from ME International

  • LDN Info Pack For Your Doctor

• PEA (for fibromyalgia)

  • Study in Fibromyalgia

  • Health Rising Overview

• CBD / THC / Medical Cannabis (please consult local laws)

  • Health Rising Guide

  • Study in Fibromyalgia

• NADH and CoQ10

  • Placebo Controlled Trial

• Nimodipine

  • Nimodipine Use In MECFS: A Comprehensive Guide by Dr. Susan Parker

• B12 Injections

  • Non-placebo trial in ME patients both with and without Fibromyalgia

• IV Saline (POTS)

  • Health Rising Overview

  • Standing Up To POTS IV Fluids Considerations

  • Port Access Supplies Ordering Guide (Australia)

• IVIG / Globulin

  • Evidence Review 2021

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

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)