April 2021 Newsletter

Welcome to our ME International newsletter. We hope you find some valuable information in these newsletters. If you want to contribute to our next newsletter or have comments and suggestions, please let us know. 

Jim Lutey, Editor James.Lutey@ME-International.org
Colleen Steckel, Editor Colleen.Steckel@ME-International.org

Graded Exercise Therapy (GET) is not recommended
Website Updates

ME-I continues to update its list of international organizations. See the list HERE.

We are currently working on a regional page for Spain. We have recently found one organization in Brazil (in Portuguese) and thought we would pass that on to you at this time (since we have a member in Brazil). Please see our "Map of Members" below and on our Membership Application page to see our current reach.

Help us to get more members in more countries.
Naomi Whittingham's Blog

Naomi Whittingham's latest blog about what it means to be living in this era with ME (and other conditions). "What I have craved these past few weeks is not the opening up of shops and beer gardens, but some degree of certainty and security. I have longed for someone to tell me what I can expect from the year ahead; to tell me which choices will be the right ones for me. The state of not knowing has weighed heavily indeed."  

ME International Chat Rooms

One of ME International's priority goals is to Alleviate Loneliness. Heather Seckinger, one of our board members, established ME-I Chat Rooms, a specific facebook group. We hope that ME sufferers will feel less alone knowing people care and can be there for each other. We also hope it will enable people to connect and make new friends.  

See our ME-I Chat Rooms blog HERE for more detail on how to join and host a room.

Tweet About ME International's Medical Practitioners Guide

Joan McParland #LongME21years@JoanMcParland tweet wording: Sincere thanks to @ME_Intl @KCSteckel for this amazing 5min crash course #ME educational handout @hope4mefibroni would love to post out FREE copies to NI healthcare provider/Departments to all who ask @rcgp_ni @PharmForumNI @RCN_NI @GPTrainingNI @NHSC_NI 
Graphic from tweet of the printed handout.

The blog for this handout can be found HERE.
A Conversation With Dr. Byron Hyde

This is a long, but informative, video interview with Dr. Hyde. Click HERE for the video. It covers some of the information presented in his new textbook "Understanding Myalgic Encephalomyelitis" available for purchase at THIS link. A download for a transcript can be found HERE.

ME, as defined by Dr. Hyde, is specific to those patients whose onset is connected to an enterovirus. While ME International promotes the adoption of the ICC and IC Primer, we also state in our position paper: "ME International supports recognition of the original description by Dr. Ramsay, research into the multiple outbreaks, as well as recognition of the possible connection to enteroviruses (polio) and/or retroviruses."  

The key to proper research is proper diagnosis of patients. ME International promotes the use of the ICPrimer to guide doctors to do a thorough screening which includes the SPECT scan information referred to by Dr. Hyde.

Other books and free pdfs by Dr. Hyde can be found HERE.

Long COVID Alliance

Three board members from ME International were among 90 participants in the first meeting of the Alliance. Solve M.E. will be staff to the Alliance until June 2021, when they will reach out to partners to take a more active leadership role in the ongoing operations and strategy. What the specifics will look like is what one of the working groups will be talking about; the working group on “Long COVID Alliance Structure and Sustainability.” To understand why ME International joined the Alliance, see our blog HERE.


THE SUFFERING IN SEVERE ME IS APPALLING. "It is sad and hurtful if people do not make the effort to comprehend your reality or experience, do not even try to understand the impact of severe symptoms or understand how they can help or hinder, validate or neglect you."

For more information on Severe ME, please see "Severe ME: More Notes For Carers" and information on the Stonebird Website.

National Centre for Neuroimmunology and Emerging Diseases - NCNED

AUSTRALIA NCNED is inviting patients formally diagnosed with ME/CFS (ICC & CCC) and healthy controls (aged between 18 to 65 years old) to participate in continuing research using magnetic resonance imaging (MRI) of the brain. Participants must be able to travel to the MRI in Brisbane. If you are interested in being part of the study or would like more information, please contact NCNED on
07 56789283 or email ncned@griffith.edu.au

The purpose of ME (Myalgic Encephalomyelitis) International is to educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, organizations, family and friends.