January 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. 
 
Sincerely,

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

  
 
TICKLING YOUR FUNNY BONE  
 

  
 
We wish all of our ME patients, caregivers and advocates a happy and healthy 2021.  Stay safe and rest, like Mr. Panda.  

 
ME INTERNATIONAL NEWS 
 
 
ME International Website
 
We now have Norwegian and European organization pages.   
 
 
Please check out the Patient Resources page often (it is updated regularly).  

 
PATIENT CARE
 
 
Pulse Oximeters        
 
ME International is taking more requests for a FREE Pulse Oximeter for our ME members that want and need one.  If you have not already requested one, please reply to this email or Admin@ME-International.org. 
 
Please provide your name and full mailing address.  The pulse oximeters will be provided on a first come first served basis as there is a limited suppy.  Also, please let us know if we can use a testimonial from you after receipt of your pulse oximeter.  We would just use your first name and country. 
 
The use of a Pulse Oximeter can be especially useful for people with ME (Myalgic Encephalomyelitis).  From the ME IC primer: "A heart rate monitor can assist in keeping cardiovascular responses below the anaerobic threshold, resting heart rate is elevated in people with ME, and low blood volume can lead to elevated heart rate."  It helps to understand how ME affects the heart rate; therefore, we will make available a flyer that will describe the importance of measuring heart rate for people with ME.

 
 
Donations can still be made to help us with this project so as many of our members as possible can better manage their activity and heart rate.
  
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.
 
You, your family, and your friends can donate HERE.
 
     
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) Guideline          
 
On November 10, 2020, NICE posted a new draft ME/CFS guideline for review.  The guideline covers diagnosing and managing myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) in children, young people and adults.  ME International registered as a stakeholder for the draft guideline and submitted comments on the draft guideline.  The guideline is expected to be published April 21, 2021.  Copies of the guideline will be sent to stakeholders two weeks before it is published to review for errors.   
 
ME International's comments, in part, stated that 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. 

 
New Book - Myalgic Encephalomyelitis & The Return of Polio to the USA
By Byron Hyde MD

This fascinating work is the updated and re-titled 2nd edition of the prescient December 2019 book "The Return of Polio to the USA".  

Byron Hyde, MD 
Dr. Byron Hyde MD, a world-renowned expert on Myalgic Encephalomyelitis (M.E.) for over 30 years, thoroughly presents evidence from around the globe linking Polio, M.E., and Acute Flaccid Paralysis, dubbed the "New Polio".  Dr. Byron Hyde is a leading worldwide authority on Myalgic Encephalomyelitis.  For 35 years he has examined M.E. patients in 15 countries and has uncovered multiple pathologies in patients diagnosed with so-called CFS.  He has known and worked with the majority of the great M.E. and Polio researchers of the 20th and 21st centuries.  He has lectured around the world on M.E. and CFS and is one of only two physicians invited to address the House of Parliament and the House of Lords Committee on M.E. in London. 

 
 
Although Polios 1, 2, and 3 have been largely controlled through the Salk and Sabin immunizations, there are other forms of Polio that are still misdiagnosed or even  ignored.  This book focuses on enteroviruses (EVs), a large virus group that can cause a variety of illnesses from Hand, Foot and Mouth Disease to the more serious and life-threatening Polios and M.E..  Dr. Hyde documents the medical similarities between these EV diseases, including the grossly misunderstood affliction M.E., and highlights the fact that M.E. epidemics have occurred at the same time as Polio epidemics around the world for over a century.  He also reiterates that the greatly undeserved attention and funding given to the catch-all category "chronic fatigue syndrome" is partly responsible for the prevailing ignorance about both M.E. and Polio.
 
This book is essential reading for doctors, healthcare providers, and government health officials, while also appealing and accessible to the general public.  A must-read in 2021.   
 
The book can be ordered on Amazon by clicking HERE.  
 
Also, anyone internationally can get the e-book directly from the nightingalepress.ca site.

 
SCIENCE
 
 
NCF appeals to patient community to raise additional $40K for new
research based on patent findings
by Alan Cocchetto, NCF Medical Director
  
Kathy Collett
   
This article was submitted by Kathy Collett of Australia.  Kathy is in touch with the researchers and says that the research by the National CFIDS Foundation (NCF) will use the ICC diagnostic criteria for ME.
 
 
The article discusses a new Myalgic Encephalomyelitis discovery, the increase of asparaginyl beta-hydroxylase (ASPH) in the cells of patients.  Read the article 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.
  

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