September 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   James.Lutey@ME-International.org  
 

  
 
TICKLING YOUR FUNNY BONE  
 
  
 Let's hope the "tour" is over soon, and we can get back
to our normal lives.


 
ME INTERNATIONAL NEWS 
 
 

 
 
The ME International Board approved Bazia as a board member on June 23, 2020.  Bazia has ME, but she has a tremendous business and volunteer background.  She lives in Ohio USA and is a great addition to the board.   
 
 

 
ME International Website
 
We have updated our home page thanks to input from our facebook support group.  Check it out HERE.   

 
PATIENT CARE
 
 
IC Primer Now Available In More Languages   
 
Find links to all pages HERE on the Primer/Cheat Sheets page under the Medical/Research info tab.
 
English
In het Nederlands - Dutch 
Auf Deutsch - German 
En Francais - French 
Pa Norsk - Norwegian  
Pa Dansk - Danish 
 
More translations are expected soon.  If anyone knows of a translation not listed, please contact us at Admin@ME-International.org.  

 
Dysautonomia International Exercise & Physical Therapy Survey    
 
Many #PwME deal with various forms of dysautonomia and we know exercise is dangerous.  Please consider filling out THIS survey and let them know that for those of us with an ME diagnosis exercise therapy is dangerous.
 
It is a very short survey and allows for comments.  Consider including in comments a link to the "Exercise Dangers" page on our website. 

 
Confirming Diagnosis Of #Myalgic Encephalomyelitis - BRAIN SCANS 
(new blog posted on ME International website)
 
This is a blog about a personal experience getting a SPECT scan through CereScan.  This scan is similar to what is described on page 4 of the  #MEICPrimer

The blog shares information about why to do a brain scan, understanding ME & SPECT brain scans, preparing for and what it's like to get a SPECT scan, test results, cost and more.
 
Read the blog HERE

 
Epidemiological And Clinical Factors Associated With PEM Severity In Patients With ME/CFS  
 
While this study used the term ME/CFS and the term post-exertional malaise, the patients selected for this study were selected by the same physician and all
patients greater than or equal to age 18, met the ME International Consensus Criteria  
(ME ICC) 2011.  Click HERE for the study. 
 
Part of the conclusion of the study stated:  "We observed more severe PEM in older patients at disease onset, and among those who were suffering from recurrent infections during their disease course. More severe PEM was also observed in patients in whom ME/CFS onset was preceded by GI infectious precipitants."

 
ADVOCACY
 

New Organizations Added To Website
   
ME International lists all ME-ICC orgs on the main page of each country and other orgs can be found using the "Other Criteria Organizations" buttons at the bottom of each org page.  South Africa is an org recently added.   
 
Click HERE for the orgs page on our website.  The organizations completed so far are:  International, Australian, Canadian, Japanese, Portuguese, South African, United Kingdom, and USA. 

 
SEVERE ME NEWS   
 
 
Severe ME Day - August 8 
 
Severe ME Awareness Day has come and gone, but the reality of Severe ME is that it isn't just for one day - it is every day.

 
 
A new video by Greg and Linda Crowhurst shares the reality of living with ME.  See the video 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
 
 
Like us on Facebook  ME- myalgic encephalomyelitis- International Group


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