October 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. 

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



This committee was recently established and is envisioned to be comprised of at least one member from each country depending on the size of the country.  There are currently six members on the committee in Canada, USA, Australia, the UK, South Africa, and Nigeria.   
We envision that each Committee member would:
  • Support and promote the International Consensus Criteria (ICC) and IC Primer,
  • Advise the MEI board of special ME related needs in your country,
  • Propose strategies for your country that would fit under our current goals,
  • Represent the interests of ME patients and advocates in your country,
  • Share approved MEI information with patients, advocates and others in their country which can be taken from the MEI website,
  • Establish partnerships with other organizations, including medical provider organizations, and
  • Promote and recruit new members for MEI.
Committee members are just beginning to do what they can in their country.  If you would like to be considered for this committee, please send us an email at Admin@ME-International.org.  

ME International Website
We have some updates to our website that you might want to check out.
  • A French version of the SPECT Scan blog is now available.  Click HERE.
  • A movie was added to the history page - "Chronic Fatigue Syndrome and ME" which is a documentary movie from 2016.  This movie is an in depth worldwide history of ME starting with Florence Nightingale. The movie includes a connection to polio, the XMRV story, as well as the inadequate response to outbreaks by the CDC.
  • More ICC studies have been added.
  • There are four buttons at the bottom of our website that go to Facebook, Twitter, Pinterest and Linkedin.  You can share that page to those sites if you are on them.

The Economic Impacts of ME/CFS  in an Australian Cohort      
This is a new study from Australia.  Click HERE for the study.  The results state in part:  "Previous studies indicated that ICC defined ME/CFS represents a subgroup of ME/CFS patients with decreased physical and social functioning capacity relative to the Fukuda defined groups (615).  In this study, all groups reported high levels of unemployment due to illness and substantial indirect costs incurred as a result of lost income.  The average annual loss in this cohort was $36,549 for Fukuda, $45,211 for ICC and $55,583 for CCC.  There are higher costs and greater losses in income in the ICC and CCC cohorts compared to the Fukuda cohort."
ME International is glad to see more research specific to the ICC patient group.    

NOTE: ME International agrees with this IC Primer statement on page ii: "Our panel strongly recommends that only the name 'myalgic encephalomyelitis' be used to identify patients meeting the ICC because a distinctive disease entity should have one name."   

German #MEICC Petition    
There is a new petition from Germany that is promoting adoption of the ICC and IC Primer.  It states "Unfortunately, there is no medical care whatsoever for the approximately 240,000 people who suffer from myalgic encephalomyelitis (ME) in Germany.  The disease is also known as Chronic Fatigue Syndrome (CFS) or ME / CFS.
Although the disease has been recognized by the WHO (ICD-10 G93.3) since 1969, ME is still not taught in medical studies, so most doctors do not even know it, they cannot help or even recommend harmful ones based on incorrect information therapies.
In order for doctors not to harm ME patients, they must be properly informed about ME.  The "MYALGIC ENCEPHALOMYELITIS International Consensus Guideline for Doctors" (ME IC Guideline) developed by ME specialists is suitable for this purpose.  It contains strict diagnostic criteria (the ICC) and information for doctors (e.g. which blood tests show abnormalities).  
We hope that you will support this petition in order to finally bring care and research to a level appropriate to the prevalence of the disease (today ME is three times more common than HIV in Germany!).
The Ministry of Social Affairs and Integration and the Ministry of Science, Research and the Arts urgently need to take action to improve the situation of those affected."  Please sign this petition 
For the US petition, click HERE to learn why this organization promotes the ICC diagnostic criteria for ME patients.  Anyone in the world can sign the petition because what happens in the US affects everyone around the world.   

Severe ME: Contemplate Paralysis If You Can  
Recently added to our Severe ME webpage is a link to new website post at Stonebird called  Severe ME: Contemplate Paralysis If You Can.  


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

Like us on FacebookView my profile on LinkedInView on InstagramFind me on PinterestFollow us on Twitter

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