February 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 Abizu, 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
HAPPY VALENTINE'S DAY
Find out how Valentine's Day is celebrated around the world HERE.
IN THIS ISSUE
CONTENTS

  • ME INTERNATIONAL NEWS
  • Translating Our Newsletters
  • Website Updates
  • 2021 Annual Report
  • MEMBER NEWS
  • Zentangling Class
  • PATIENT CARE
  • Australian Government Compensation for COVID-19 Vaccine Injuries
  • SCIENCE
  • "Epstein-Barr virus may be leading cause of multiple sclerosis"
  • Interview with Dr. Lena Pernas: Possible Toxoplasma reactivation in COVID-19/LongCovid
  • HISTORY
  • The Tangled Story of ME/CFS
  • IN MEMORIUM
  • ME/CFS Memorial Page

ME INTERNATIONAL NEWS
TRANSLATING OUR NEWSLETTERS

Some of our members have asked if we could provide our newsletters in their language instead of English. We have investigated how this can be done and thanks to our webmaster, David Steckel, there is a way. Click on THIS website page for instructions on how to translate our newsletters and other webpages on Google Chrome and Firefox.

If you have edits or instructions for other browsers, please share them via email at Admin@Me-International.org.

Website Updates

  • Our blog Coronavirus and #MyalgicE has been updated with a link to useful information from the Infectious Disease Society of America.


  • We try to make our website "comfortable" and usable for our members. If you have any comments regarding this, please let us know. We are limited in some things, but will try to accommodate where we can.
In case you didn't see it earlier, the ME International Board of Directors issued its Annual Report for calendar year 2021.

We thank all of our volunteers who contributed in many ways to help us achieve our goals. We look forward to a progressive 2022.

You can see our Annual Report HERE. Items include board of directors, strategic plan, membership, patient support, outreach and advocacy, committees, website, and financial position.

If you have questions or comments, please contact
MEMBER NEWS
Zentangling Class

We are happy to announce that a member, Byrd Tetzlaff, has generously offered to teach Zentangling to our membership. She’ll be teaching the classes via Zoom on a monthly basis. For those unfamiliar, Zentangling is a meditation based on art patterns, especially designed for those with little to no art background (but artists are welcome, too). It is ideal for folks with ME, because the cost of supplies is very low, the tools are small, and it can be done in an easy chair or even in bed. Since they are smallish, they take very little in the way of time and energy. They may look complicated, but Byrd assures us they’re actually very easy to do after learning a few strokes.
 
The supplies needed are as follows: 

A pencil
A black Micron or Pilot Precise pen
A tortillon (a paper stump for blending)
Card stock or unlined index cards
All of these supplies can be found on Amazon or at your local art store. 

The first class will be held on February 4th at 1:00 pm EST USA. If you’d like to participate or have any questions please reach out to admin@me-international.org. 

If any member wishes to contribute to our monthly newsletter, please contact us.

PATIENT CARE
Australian Government Compensation For COVID-19 Vaccine lnjuries

The Australian Federal Government has announced compensation for those injured by COVID-19 vaccinations. The range is from $5,000 to $20,000. There is an extended payment of up to $600,000 for more severe injuries. Patients must spend at least one night in hospital. 

For more information, see the Australian government's Facebook page HERE.

SCIENCE
"Epstein-Barr virus may be leading cause of multiple sclerosis."

This research is specific to Multiple Sclerosis (MS) but the implications are important for research into myalgic encephalomyelitis (ME) and possible treatments.

From the ME IC Primer (pg 2): "Antibody testing for a
number of viruses revealed subtype-specific relationships for Epstein Barr virus and enterovirus, two of the most common infectious triggers for ME."

The ME IC Primer recommends thorough screening to include ruling out MS. ME and MS have some overlapping symptoms that have led to misdiagnosis in both patient groups.

The ME IC Primer (pg 11) also recommends viral testing for Epstein-Barr Virus as well as enterovirus, cytomegalovirus (CMV), human herpesvirus 6 (HHV-6), chlamydia pneumonia, mycoplasma, Borrelia burgdorferi, & Parvovirus B19. This testing can lead to antiviral treatments that may improve quality of life. See a link to the #MEICPrimer at the top of the home page of our website HERE.

This study connecting EBV to MS opens the door to more research looking into the connection between viruses and myalgic encephalomyelitis. See the study HERE.


NOTE: Some of the other science we are watching may not be specific to ME, but it may open doors to understanding. 



Interview with Dr. Lena Pernas: Possible Toxoplasma reactivation in COVID-19/LongCovid

Of special interest is a recent podcast from Amy Proal of PolyBio interviewing Dr. Lena Pernas about possible Toxoplasma reactivation in COVID-19/LongCovid. Toxoplasma gondii is a parasite that causes a chronic infection in a large segment of the human population and has been implicated in a range of neuropsychiatric symptoms. The ME ICPrimer recommends testing for Toxoplasmosis as part of the immune system profile testing found on page 11. Understanding the role reactivated viruses play in any illness could lead to curative treatments for people with ME. See the podcast HERE.

See ME IC Primer HERE in multiple languages. 

HISTORY
The Tangled Story of ME/CFS
Controversy, Denigration and Ignorance

This is a film that examines the historical and political context of the illness myalgic encephalomyelitis/ME (referred to in this project as "ME/CFS").

Valerie Eliot Smith contributed to the making of the film and has lived with ME since 1981. Valerie prefers to talk about ME and regards "ME/CFS" as a hybrid construct (as per the CCC) and CFS is yet another one (Fukuda). ME International also promotes ME as a distinct disease apart from CFS. Nevertheless, the film is enlightening and helpful to understand the history of ME and how ME patients have been treated so poorly for decades.

Click HERE for the film. It is 1 hour and 11 minutes, but can be viewed in segments.

Dialogues for a neglected illness (Dialogues for ME/CFS) is the main website that was produced with a Wellcome Public Engagement Fund Award between September 2018 and December 2021. Dialogues explores aspects of the disease known as ME/CFS from the perspectives of doctors, researchers, patients, carers, advocates and medical providers.

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.