June 2022 Newsletter
Greetings! 

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,

Ona Albizu, Euskadi, Spain, Contributor
Jennifer Caldwell, N. Carolina, USA, Proofreader
Kathy Collett, Western Australia, Contributor
Jim Lutey, Colorado, USA, Designer, Editor
David Steckel, Illinois, USA, Proofreader
Sue Mueller, Ohio, USA, Contributor

IN THIS ISSUE
CONTENTS

  • ME INTERNATIONAL NEWS
  • Website Updates
  • RESEARCH
  • Alteration of Cortical Volume and Thickness in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
  • Eye Movements May Be The Key To Chronic Fatigue Syndrome Diagnosis
  • Ground-Breaking Science with a Human Touch
  • HISTORY
  • The Why: The Historic ME/CFS Call To Arms by Hillary J. Johnson
  • PATIENT CARE
  • Low Dose Naltrexone
  • COVID-19 and ME
  • IN MEMORIUM
  • ME/CFS Memorial Page

ME INTERNATIONAL NEWS
Website Updates

We would like to give recognition to Ona Albizu, one of our members in Spain, for helping translate some of our information sheets into Spanish. 

For example, Ona translated the Dr. Handout Based on ICP which is a blog on our website. See the Spanish translation HERE.

This is an ongoing job. We currently have translated the following which can be accessed on THIS web page:
  • ME Cardiologist Handout
  • LDN Use in ME
  • Pulse Oximeter Info Sheet
  • Basics for Treating ME
  • The (Spanish) ICC Primer is currently in review and will be posted as soon as it is released.

We have also added a new page on the website - Providing Assistance to #pwME. We hope that this will be helpful and will grow with use and donations. Many other pages have been updated in the past couple of months.

RESEARCH
This figure shows volume and thickness reduction in ME/CFS patients. Volume was reduced in the left caudal middle frontal (white arrow) and thickness in the right precuneus region (white arrow) of ME/CFS patients compared with HC. The volume is represented with filled blue color whereas thickness is represented by unfilled green color. Significant volume and thickness clusters were overlaid on the inflated brain (left and right hemisphere) available in FreeSurfer.

Alteration of Cortical Volume and Thickness in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

In this study, the researchers investigated cortical volumetric and thickness changes in ME/CFS patients and healthy controls (HC). They estimated mean surface-based cortical volume and thickness from 18 ME/CFS patients who met International Consensus Criteria (ICC) and 26 HC using FreeSurfer.

The study demonstrated different cortical volume and thickness in ME/CFS patients and showed abnormal cortical volume and thickness regressions with key symptoms of ME/CFS patients.

To read the full article, click HERE.

Eye Movements May Be The Key To Chronic Fatigue Syndrome Diagnosis

Associate Professor Joanne Fielding, from the Department of Neuroscience, and other scientists in Australia, are being funded by the Judith Jane Mason & Harold Stannet Williams Memorial Foundation (the Mason Foundation) through Equity Trustees to conduct a project identifying objective behavioural markers for myalgic encephalomyelitis/chronic fatigue syndrome.

Associate Professor Fielding said “What we’re trying to do is generate a unique ME/CFS signature based on characteristic changes to eye movements, a behaviourial signature that is specific to the disorder that can be used to help diagnose it and monitor the effects of any treatments.”

Associate Professor Fielding and her team will develop the clinically useful test using ocular-motor, machine learning and neuroimaging techniques. “We’re using video-oculography, which is basically high-powered cameras that record the eye movements in response to a set of simple stimuli on the screen," she said.

To read the full article, click HERE.




Ground-Breaking Science with a Human Touch




Emeritus Professor Warren Tate of New Zealand

What the internationally-renowned biomedical scientist/molecular biologist only alludes to are the distinguished awards he’s won, including the 2010 Rutherford Medal and the 2018 Marsden Medal.

Professor Warren Tate's daughter has suffered from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) for 22 years.

Professor Tate finally received some research funding for ME/CFS. He says his research team studied immune cells and discovered molecular signatures for the disease, one in immune cell proteins associated with energy production and one in DNA.

To read the recent article written by Sharon Fowler, click HERE.

HISTORY
The Why: The Historic ME/CFS Call To Arms by Hillary J. Johnson
by Kathy Collett

Patients admired Hillary Johnson's groundbreaking Osler's Web, and now they welcome her new book in which the author provides a further insight into the scientific bias, misappropriation of ME Federal research funds, the origins of the name Chronic Fatigue Syndrome and biological abnormalities leaving patients vulnerable and to their own devices.
 
The dealings with the CDC and NIH in the USA are well known to patients and have been detrimental in advancing ME; their control has held up progress. It has gone on for decades and even with changes in Directors, the problems still exist.
 
While patients have voiced their dissatisfaction particularly on Twitter including the CDC and NIH in their tweets, they won't budge and the book was borne from their experienced frustrations. Hillary has condensed the associated problems in her 91 page book. (NOTE: Her book can be purchased on Amazon HERE).
 
As a long-term ME patient, Hillary belongs to the era where there was an explosion of cases and doctors like Jay A. Goldstein and Paul Cheney worked tirelessly to assist patients and were able to prove the illness has an organic basis. Later Prof. Hokama also provided a valuable contribution.
 
While a lot of the NIH's and CDC 's actions were behind closed doors, Twitter has been a great source to explain their appalling lack of concern too and Hillary has kicked the door wide open.
 
PATIENT CARE
Low Dose Naltrexone (LDN)

LDN is becoming more widely used because it has been found to be therapeutic for myalgic encephalomyelitis (ME) patients in a number of ways with a good safety profile.

Volunteers at ME International have put together information about the use of LDN. Click HERE AQUI for the information sheet in English and Spanish.

The information provided is not intended to diagnose or treat any illness and is not to be considered as medical advice.

COVID-19 and ME

Check out this video HERE that is a news story in Australia about COVID-19 patients possibly resulting in ME.

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 educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, organizations, family and friends.

ME International recognizes ME as defined by the International Consensus Criteria (ICC) as a distinct disease separate from CFS, ME/CFS, or SEID.
ME International recognizes ME according to the ICC as a distinct disease separate from CFS, ME/CFS, or SEID.