May 2021 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,

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

TICKLING YOUR FUNNYBONE


Rest is good medicine

ME INTERNATIONAL NEWS
Synopsis of April 21, 2021 Board Meeting

Other than routine business, the board approved Heather Seckinger to be Secretary as Colleen Steckel resigned from that positon. Thanks to Colleen for serving as Secretary for over a year.

A proposed policy on conducting board meetings was approved.

A proposed policy on bringing on new board members was tabled until the next board meeting.

Pam Lutey brought up establishing groups throughout the world and was given authority from the board to proceed. (See the next article).

The next board meeting was scheduled for June 21, 2021.
We Will Be Forming Groups By Countries

Starting this month, we will be forming groups by countries.
This will give our members in one location or region a place to talk and learn more about ME and what is offered in each country.

At first it might be several countries together but as the numbers grow, we will be forming smaller groups. This will be a great way to get to know others in your area and to let us know what needs to be addressed in order to help. 

These groups could possibly meet by Zoom at a certain time each month. We hope to have current information about ME discussed at the meetings plus a program of interest. If you are interested in leading a group or would like more information, please email admin@me-international.org.
Countries of current ME International members
PATIENT CARE
Pulse Oximeter Fundraiser

ME International plans to distribute more FREE Pulse Oximeters to our members who want and need one and that have not received one. We are targeting mid-May for the shipments. We will be shipping a Pulse Oximeter to those currently on our waiting list and will have an additional 25 left over. Please email us at admin@me-international.org to reserve yours.
 
We still need donations to cover costs of the devices and shipping. Donations can be made to help us with this project so as many of our members as possible can better manage their activity and heart rate. Please share with your family and friends.  
 
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

SEVERE ME
Life-Threatening Malnutrition in Very Severe ME/CFS

In this study, five case reports in which delay in instigating tube feeding led to severe malnutrition of a life-threatening degree. This case study aims to alert healthcare professionals to these realities.

The study concluded in part: "To remedy the problems identified in this survey, the most important first step remains to improve medical education for healthcare professionals regarding the fact that severe ME can cause nutritional problems, and that these may require early intervention with tube feeding.”

RESEARCH
JAPAN: Possible Biomarker

Japanese Researchers post preprint of the paper: "Skewing of the B cell receptor repertoire in ME/CFS." 

The introduction cites the #MEICC and patient selection stated as: "All patients with ME/CFS fulfilled the Fukuda criteria (Fukuda et al., 1994), Canadian criteria (Carruthers, 2005), and International consensus criteria (Carruthers et al., 2011)."

Highlights
0        "ME/CFS is characterized by skewed B cell receptor gene usage.
0        Upregulation of specific IGHV genes correlated to infection-related episodes at onset.
0        Plasmablasts of ME/CFS patients upregulated interferon response genes.
0        B cell receptor repertoire analysis can provide a useful diagnostic marker in ME/CFS."
 
ADVOCACY
May 12 Awareness Day

This year, 2021 marks the 29th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases. RESCIND (no longer active).
 
Click HERE to read more about May 12 Awareness Day.

The late patient and staunch advocate, Thomas (Tom) Hennessy Jr., realized the need to have a dedicated day to raise awareness for the diseases he championed for - myalgic encephalomyelitis (ME) and other complex immunological & neurological diseases (CIND) - such as fibromyalgia (FM), Gulf War illness (GWI), multiple chemical sensitivity (MCS), and chronic Lyme disease (CLD).  
Read more in THIS blog post "In Memory of Thomas M. Hennessy, Jr."
How To Hide A Disease In Plain Sight
Becca Waddle's blog

See Becca's interesting blog about how Myalgic Encephalomyelitis has been treated in the past and how the disease has been hidden. See her blog HERE. It includes links to translations in German and Dutch.

Netherlands Government

"What started with the offering of 56,000 signatures by “Citizen Initiative Recognize ME” to the Minister of Health, Welfare and Sport in 2013 resulted in a final today. A letter to parliament from the outgoing Minister of Health, Welfare and Sport Van Ark has just been published, in which she indicates that she will adopt all the recommendations from the research agenda submitted in December 2020."

HERE is a link to the article.

IN MEMORIAM
Dr. Jay A. Goldstein

Dr. Jay A. Goldstein was a prominent ME clinician and researcher located in southern California, USA. Trained as a psychiatrist, he taught at the University of California, Irvine. He was director of the Chronic Fatigue Syndrome Institutes of Anaheim Hills and Beverly Hills. He organized a symposium in Los Angeles on Chronic Fatigue Immune Dysfunction (CFIDS) and fibromyalgia. (Dr. Goldstein used CFS & CFIDS labels at the time he practiced.)
Kathy Collett in Australia wrote: "l first became aware of Dr. Goldstein after I read his groundbreaking earlier book, The Limbic Hypothesis. I then saw him in his surgery and travelled from Australia. I couldn't get over how brilliant, compassionate and dedicated he was. Over the years I had contact with him, he continued to make amazing findings and put the focus on brain dysfunction and neuroscience. I had never met a doctor like him and I doubt I ever will".
Dr. Goldstein died on March 4, 2021. More info can be found in this article which also shares some of his personal history.
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.