June 2020 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. 
 
Sincerely,

Jim Lutey, Editor   [email protected]  
 

  
 
ME INTERNATIONAL NEWS 
 
 
 
The ME International Board approved Janet at its April 29, 2020 board meeting.  Janet has ME, but she has a tremendous business and volunteer background.  See her bio HERE on our website.  She is a great addition to the board.  
 
The board met via video chat on May 27 and reviewed preliminary goals and objectives.  The board decided to pursue the goal of educating medical providers to create awareness about ME.  We will be developing a brochure that could be used electronically and perhaps publish it in print form.  Is anyone interested in helping create a brochure?  If so, please let us know.   

 
PATIENT CARE
 
 
 
This month we are focusing on a cheat sheet from the North Carolina/Ohio ME & FM Support Group "Avoiding an ME CRASH" - aka Post-exertional Neuroimmune Exhaustion (PENE).  It gives an understanding of PENE with tips to minimize ME crashes.  
 
Click HERE for the cheat sheet on Avoiding an ME CRASH.

 
Myalgic Encephalomyelitis - Understanding Diagnosis 
 
ME International has recently released its first video, entitled "Myalgic Encephalomyelitis - Understanding Diagnosis" on our YouTube Channel.  There is a long (20.5 minutes) and short (13 minutes) version, which highlights:
  • What is Myalgic Encephalomyelitis? 
  • ME: The Lived Experience
  • How Does ME Relate to CFS?
  • Getting A ME Diagnosis
  • Confirming A Diagnosis of ME
  • What Is Needed?, and
  • How To Improve the Quality of Life for ME Patients
 
Click   HERE for the link to the blog on our website where you can view both of these videos. 

 
COVID-19 and ME   
 
 
Read the new information about COVID-19 and ME on our website blog HERE.
.   
As part of that blog, HERE is a direct link to DIY face masks.  

 
ADVOCACY
 

ME Organizations

ME can leave us feeling isolated.  You are not alone!  
 
There are many organizations that can provide information to help you connect.  Find on our website links to organizations from around the world, including archived organizations.  International organizations are listed by their country of origin.

Each organization focuses on various patient populations.  We have organized this list by the criteria used by each organization, as determined by their website.
 
See the ME organizations that have been posted so far HERE.  This is a work in progress. 

 
SEVERE ME NEWS   
 
 
Kara Jane Spencer: severely ill singer
 
A singer seriously ill with a severe form of ME has asked musicians and studio technicians to help finish her debut album.  
 
 
Kara, who did not expect to live to see her album recorded, hopes to release a song after more than 100 people offered help.  Read her touching story HERE. 
 
Also, read Naomi Whittingham's blog about this inspiring story HERE.   
 
 

 
SCIENCE     
 
 
Mitochondria and ME
Guest blog by John Duncan 
 
" One of the exciting aspects of mitochondrial research is, given the pervasive impact of mitochondrial health on the cell, a deeper understanding of many earlier abnormal discoveries and observations may be gained through understanding the abnormalities of mitochondria in ME."  John Duncan
 
Read his blog on our website by clicking HERE.   

 
IN MEMORIAM    
 

ME/CFS Memorial Page

"This page acknowledges all those who have passed from ME/CFS or secondary conditions. They acknowledge their suffering and promise that they have not died in vain.  With love, we remember them."  Click HERE for the memorial page.

 

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

 
 ME International
 
 
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Disclaimer:  
 
The information provided at this site is not intended to diagnose or treat any illness.