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
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CONTENTS
- ME INTERNATIONAL NEWS
- New Board Member
- Give With Bing
- Website Updates
- PATIENT CARE
-
Low Dose Naltrexone may benefit #pwME
- RESEARCH
- The Importance of Red Blood Cell Deformation
- Considerations When Developing Long COVID Therapeutics
- Molecular Mimicry Connects an EBV Viral Protein to Multiple Sclerosis
- Lessons From Long COVID
- IN MEMORIUM
- ME/CFS Memorial Page
- Remembering Lily Silver
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New Board Member -
James Davis
James was a volunteer for ME International and then applied for board consideration on January 26, 2022. The board had a Zoom "Meet and Greet" with him on February 7, and the board then voted to accept him on the board.
James lives in Steilacoom, Washington, USA. He was a teacher but had to quit because of his ME. He has interests in patient education and fundraising and he attended his first ME International board meeting on February 21. We look forward to having James on our board.
Check out his bio on our website HERE.
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Give
With
Bing
Support ME International through Give with Bing
Give with Bing is a feature of Microsoft Rewards that enables individuals to support causes that they care about simply by searching on Bing.
ME International recently registered with Benevity Causes Portal. Benevity helps our organization access support from 700+ of the world’s most iconic brands and their 20 million people, through giving, volunteering and grantmaking. We have a dedicated online space for our nonprofit. We can publish our giving and volunteering opportunities and we have signed up to receive payments electronically.
Microsoft Rewards lets you support ME International through its Give with Bing program. After signing up and selecting our organization, you can earn rewards points just for searching the web with Bing. Microsoft then turns those points into cash donations to us.
The program is free--you just need to sign up with a Microsoft account. As of January 2022, Microsoft Rewards has donated $10,597,756 to nonprofits around the world.
Join now by clicking HERE.
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Website Updates
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We have added an Advocacy page under the Home tab of our website. Here we'll post some of the correspondences we've had with others in the community.
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As always, we continue to add information on research found regarding ME as defined by the ICC.
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Low Dose Naltrexone May Benefit #pwME
This study shows how Low Dose Naltrexone may benefit #pwME.
"TRPM3-dependent Ca2+ influx was restored in ME/CFS patients following overnight treatment of isolated NK cells with NTX in vitro. Collectively, these findings validate that TRPM3 loss of function results in altered Ca2+ influx supporting the growing evidence that ME/CFS is a TRP ion channel disorder and that NTX provides a potential therapeutic intervention for ME/CFS."
"ME/CFS patients were included if they met the CCC or ICC case definitions..."
See the full article HERE.
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The Importance of Red Blood Cell Deformation
by Kathy Collett
When l attended a talk by Dr. Les Simpson from New Zealand in the early 1990s in Perth, Western Australia, little did l know it would resonate decades later with the current pandemic.
In the 1980s he identified deformed red blood cells in Myalgic Encephalomyelitis patients showing impaired microcirculation of the blood through the capillaries. He put it down to a blood flow problem which of course was identified by Drs. Jay A. Goldstein and Mena a few years later when they implemented brain SPECT scans and discovered patients had a decreased blood flow to the brain.
Today, new German research has been greeted with much excitement because they have also connected it to Co-Vid19.
Their research shows the delayed effects the virus has on blood flow. They used a special camera to look at the blood vessels in the eyes.
In his retirement, Dr. Simpson visited patient support groups in Australia, UK and USA and he presented his research. In some cases he conducted tests. There are long-term ME patients who remember his visits. See Dr. Simpson's visit to Ireland HERE.
Also, in regard to blood research, see Tracking Long COVID in the Blood HERE.
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Considerations When Developing Long COVID Therapeutics
Click HERE for a presentation by Michael VanElzakker from PolyBio Research Foundation covering research into #MyalgicE as it may pertain to #LongCOVID.
It covers a lot of information including:
- Value of using #MEICC for patients selection in research.
- The field needs to rethink "post" viral as the body isn't sterile with many ongoing viral issues known.
- Vagus nerve sickness response (feeling sick).
- brain glial activation.
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Molecular Mimicry Connects an EBV Viral Protein to Multiple Sclerosis
Dr. Tobias Lanz
Research in this interview is not specific to #MyalgicE but offers insight into how viruses lead to chronic illnesses.
"@polybioRF podcast. I interviewed Dr. Tobias Lanz: MD + researcher in the lab of Prof. William Robinson at the Department of Rheumatology/ Immunology at Stanford School of Medicine."
"In the interview Tobias discusses this breakthrough study he led at Stanford. It showed that a cross-reactive antibody can contribute to #MS neuroinflammation thanks to molecular mimcry b/t an EBV viral protein (EBNA1) + a human CNS protein (GlialCAM):"
" Overall the interview explains the mechanisms by which #infection can lay at the root of “autoantibody” production."
"And Tobias delineates how researchers can now use advanced technologies + techniques (from the ability to isolate single B cells from patient cerebrospinal fluid, to the creation of crystal structures of pathogen proteins that may be mimicry targets) to explore that phenomenon"
"The findings have implications for #MECFS + #LongCovid. B/c we can identify certain autoantibodies in such patients. But where do they come from? Can they also arise as a result of molecular mimicry b/t pathogen + host proteins? We need to start doing the research to find out"
Click HERE for the video.
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Lessons from Long COVID: working with patients to design better research
"The perspectives of people with lived experience of any condition being researched must actively inform the research questions asked and the way in which we go about answering them. The experience of Long COVID gives a contemporary example of how working together with patients is integral to medical research."
“Framing illnesses that we still lack sufficient knowledge about as ‘beliefs’ can be harmful. Involving patients in shaping the question is essential for the research to be relevant to them.”
Click HERE for the article by Dr. Nisreen Alwan that uses COVID and Long COVID as his personal example of why using patient experiences to shape research is important.
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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.
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Remembering Lily Silver
In January, we lost Lily Silver, a friend to many and stellar advocate. We are sharing this Kudoboard created by some of her online friends to grieve and mourn together.
From the introduction: "We also want to honor her amazing work and keep that going. So please be gentle with yourself as you grieve. Share what you are thankful for or a fond memory. Let us know how her work helped you."
See the posts made on the Kudoboard HERE.
Lily is responsible for the website "HOW TO GET ON" which is a "A self-advocacy guide for anyone who is homebound or bedbound in the US. Special focus on folks with Myalgic Encephalomyelitis" See her website HERE.
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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.
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