September 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. 

Colleen Steckel, Editor

Sleep Disturbance

Click HERE to read about sleep disturbance and some suggestions from the IC Primer.

ME International Receives Grant
On August 11, we received a $10,000 grant from the Gilson Family Foundation (GFF). In addition to the grant this year, the GFF will provide a $5000 grant in 2022 and an additional $5000 grant in 2023 to ME International. Michelle Schmidt with the GFF said "We were impressed with what ME International is doing and its mission."

The ME International board will be devoting its September 13 meeting to revisiting its goals and objectives, determining priority actions over the next 3 years, and developing a multi-year budget.

If you have ideas and suggestions for the board, please send them to prior to its board meeting. We would love to hear from our members!
ME International is looking for volunteers to be on various committees. Volunteers do not need to be ME patients. They could be caregivers, family or friends.

We especially need some volunteers to be on our newsletter committee. If you or someone you know would be good at providing us articles each month, that would be great. They would not need to compose an article, but find an interesting article with a link.

As you may know, we have a Global Leadership Committee with a member representing Canada, Australia, the UK, the US, Spain, Nigeria, and South Africa. We would like additional GLC members for these larger countries. We envision that each committee member would:
·        Support and promote the International Consensus Criteria (ICC) and IC Primer,
·        Advise the MEI board of special ME related needs in your country,
·        Propose strategies for your country that would fit under our current goals,
·        Represent the interests of ME patients and advocates in your country,
·        Share approved MEI information with patients, advocates and others in their country which can be taken from the MEI website,
·        Establish partnerships with other organizations, including medical provider organizations, and
·        Promote and recruit new members for MEI. 

If interested in any of these committees, please contact
Low Dose Naltrexone

Click HERE for this novel study: "Potential Therapeutic Benefit of Low Dose Naltrexone in ME/CFS: Role of Transient Receptor Potential Melastatin 3 Ion Channels in Pathophysiology and Treatment."

"In conclusion, this study for the first time assessed and identified the effect of LDN on TRPM3 ion channel function in NK cells in ME/CFS patients. This novel study reports the underlying restoration of TRPM3-opioid receptor channel interaction in NK cells from ME/CFS patients taking LDN. Moreover, the wide distribution of TRPM3 ion channels in the body suggests that their compromised function may contribute to signs and symptoms of ME/CFS and therefore treatment with LDN may have a therapeutic role. "
NICE Guideline Paused

When patients do not come first

Click HERE to see the press release prepared by our Global Leadership Committee. Ona Albizu, our GLC member from Spain, took the lead in preparing the press release.

Survey for Patients Diagnosed with ME or CFS

Posted by Michael VanElzakker on twitter: "Asking people with an ME or CFS diagnosis to participant in this online study.

The study is about questionnaires used in research, and will give you the chance to say whether those questionnaires are clear or suitable."

The questions in the survey are from existing questionnaires that have been used in the past. The purpose is to show what questions are useful and which are not. So some of the sections in this study are quite inappropriate for people with ME. The data from this study is needed to show which kind of questions are useful and which are not. It is not possible to "save" and close the browser.

Comment from someone who took the survey: "Takes about an hour and requires a lot of thought. Assistance from caregiver as well as taking breaks may make it more manageable and reduce risk of post exertional neuroimmune exhaustion."
Diffusion Tensor Imaging

Diffusion tensor imaging reveals neuronal microstructural changes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Our study demonstrated that DTI parameters are sensitive to microstructural changes in ME/CFSICC and could potentially act as an imaging biomarker of abnormal pathophysiology in ME/CFS. The study also shows that strict case definitions are essential in investigation of the pathophysiology of ME/CFS.”

This new research shows the importance of selecting patients using the International Consensus Criteria (ME-ICC).

Note: while this paper uses the term ME/CFS, it clarifies that the patients in the research were comparing those diagnosed using Fukuda with those diagnosed using the ME-ICC.

Click HERE for the research article.

Study Published in July 2021 by NCNED

A study published by the National Centre for Neuroimmunology and Emerging Diseases (NCNED) in Australia is titled "The effect of IL-2 stimulation and treatment of TRPM3 on channel co-localisation with PIP2 and NK cell function in ME/CFS patients." While they use the term ME/CFS (connected to the Canadian Consensus Criteria) this research shows promise for people with ME.  

"Conclusion: Significant changes in co-localisation suggest PIP2-dependent TRPM3 function may be impaired in ME/CFS patients. Stimulation of NK cells with IL-2 significantly enhanced cytotoxic function in ME/CFS patients demonstrating normal function compared with HC. A crosstalk exists between IL-2 and TRPM3 intracellular signalling pathways which are dependent on Ca2+ influx and PIP2. While IL-2R responds to IL-2 binding in vitro, Ca2+ dysregulation and impaired intracellular signalling pathways impede NK cell function in ME/CFS patients."

Click HERE for the article.

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.