December 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  
 
  
 
 STAY HYDRATED   

 
ME INTERNATIONAL NEWS 
 
 
ME International Website
 
We now have a German ME-ICC organization page.   
 
The ICC is now in Spanish.   
 
Please check out the Patient Resources page often (it is updated regularly).  

 
ME International Position Paper

 
The ME International board of directors have developed and approved a Position Paper to clarify our position that Myalgic Encephalomyelitis is a complex, acquired multi-systemic disease apart from CFS, ME/CFS, SEID and that all patients should be screened for ME in accordance with the IC Primer. 
 
Please read the entire Position Paper HERE.   

 
PATIENT CARE
 
 
Pulse Oximeters        

The ME International board of directors is planning to provide Pulse Oximeters free of charge to its members that need one.  The use of a Pulse Oximeter can be especially useful for people with ME (Myalgic Encephalomyelitis).  The IC Primer states: "A heart rate monitor can assist in keeping cardiovascular responses below the anaerobic threshold."  The primer also indicates that the resting heart rate is elevated in people with ME and that ME includes low blood volume, which can lead to elevated heart rate.  It helps to understand how ME affects the heart rate; therefore, we will provide a flyer with each Pulse Oximeter that will describe the importance of measuring heart rate for people with ME.  
 
December 1, 2020 is #Giving Tuesday.  Please help us with this project so as many of our members as possible can better manage their activity and heart rate.  We are asking for a $40 USA donation; however, any amount will be appreciated.  Every donation to this fundraiser is intended to purchase and distribute the Pulse Oximeters.  ME International board members, volunteers and staff receive no compensation for their services.  
 
Please share this with family and friends so they can donate HERE Even though #GivingTuesday is December 1, this fundraiser will continue as long as necessary.  We thank you for your consideration and support.    
 
When sufficient funds are available, we will reach out to our members to see who is interested in receiving a Pulse Oximeter.   
 
ME International is a 501(c)(3) nonprofit all-volunteer organization founded in November 2019.
EIN 84-3568066

 
UK - NICE (National Institute for Health and Care Excellence) Guidelines         
 
On November 10, 2020, NICE posted new ME/CFS guidelines for review.  It appears there is language that may protect patients from graded exercise therapy; however, we were disappointed they did not utilize information based on the ICC or the IC Primer.  The guidelines used the 2015 IOM Report (from the US) as a basis for their recommendation with some important changes.  These changes Include reducing the time for diagnosis to 3 months and instead of PEM using the term post exertional symptom exacerbation (PESE).  From draft guidance consultation evidence review: "ME/CFS should be diagnosed in people with the key features (debilitating fatiguability, post-exertional symptom exacerbation, unrefreshing sleep and cognitive difficulties) for 3 months." (Review D - pg 53)
 
ME International does not support the use of the IOM Report for the diagnosis or treatment of people with ME and are concerned that basing the guidelines on this report instead of the ICC and IC Primer may leave medical care for UK ME patients in a status quo continuing to provide inadequate care.  NICE is accepting feedback to these proposed guidelines until December 22, 2020.   
 
The proposed NICE guidelines can be found HERE.   
 
Supplemental materials can be found HERE.  

 
New Book - Understanding Myalgic Encephalomyelitis
By Byron Hyde MD

The book includes a history of ME and CFS from the American Civil War ending in 1865 to the present, the diagnoses differing ME from CFS, ME's historic relation to Poliomyelitis, ME epidemics beginning with the world's first major Polio epidemic in 1905 and many other ME related topics.
 
 
This easy to read, hard cover, coloured, library quality 8.5 x 11-inch (22 x 28 cm) book with sewn pages is the best and most comprehensive book ever written on ME and CFS containing essential advice for patients and physicians.  Shipping started November 30, 2020.
 
The book can be ordered by clicking HERE
 

 
SCIENCE
 

World Health Organization Removed "Benign" from "Benign Myalgic Encephalomyelitis"

On November 14, @DxRevisionWatch on twitter announced that "Yesterday, the WHO approved and implemented my February 2020 proposal for removal of the prefix "Benign" from "Benign myalgic encephalomyelitis" for ICD-11:"
      
See the link to the document HERE.
   

 
Meet the Scientist: Dr.Kiran Thapaliya     
 
ME Australia
 
 
by Kathy Collett   
 
Click HERE for the article by Kathy Collett interviewing Dr. Thapaliya.
 
 
Dr. Kiran Thapaliya 
Dr. Kiran Thapaliya is a Research Fellow working at Menzies Health Institute, NCNED. His research interest lies in developing new neuroimaging methods for the direct in vivo mapping of tissue microstructure in Myalgic Encephalomyelitis and chronic fatigue syndrome.  His research focuses on understanding how changes in tissue microstructure influence MRI signals and the development of new neuroimaging methods to identify biomarkers for ME.
  
   
Kathy Collett 
 
For more information about Kathy see The Lost Years: a personal journey 
 

 
WHAT YOU CAN DO      
 
 
Amazon Smile Rewards         

ME International is a registered nonprofit organization for AmazonSmile.  During your Amazon shopping, we would appreciate you using AmazonSmile and selecting ME International as your nonprofit charity of choice.  
 
AmazonSmile is a simple way for you to support your favorite charitable organization every time you shop, at no cost to you.   AmazonSmile is available at smile.amazon.com on your web browser and can be activated in the Amazon Shopping app for iOS and Android phones.  
 
When you shop at AmazonSmile, you'll find the exact same low prices, vast selection and convenient shopping experience as Amazon.com, with the added benefit that AmazonSmile will donate 0.5% of your eligible purchases to the charitable organization of your choice.
There are tens of millions of eligible items on AmazonSmile, but before you check out, make sure your purchase qualifies. Look for the "Eligible for AmazonSmile donation" stamp in the product's description. If it is not there, the product will not count towards your total donation.  
   
Click HERE for more information about AmazonSmile.
  
Thank you for shopping AmazonSmile to benefit ME International.  Please share with family and friends.
 
ME International is a 501(c)(3) nonprofit all-volunteer organization founded in November 2019.  EIN 84-3568066  
 
Check out our Donation Page HERE including details on how to sign up for AmazonSmile. 

 
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.
  

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