March 2020 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. 

Jim Lutey, Editor  


The Board has developed branding for the organization including a new logo, banner for the website, banner for social media posts, colors, and fonts.  The Website Committee is working on putting our brand on the website and organizing the site to be more user friendly.  Pam Lutey has been designated Marketing Director and has ramped up social media activity.  The board is in the process of determining our focus areas to achieve our Mission Statement which is  "The purpose of ME (Myalgic Encephalomyelitis) International is to support ME organizations, educate the general public, medical providers, and governments throughout the world as well as support ME patients, caregivers, advocates, family and friends." 

ME International recognizes ME (Myalgic Encephalomyelitis) as described in the International Consensus Criteria (ICC) as a distinct disease and is separate from Chronic Fatigue Syndrome (CFS) as described in the 1994 Fukuda definition and is also separate from ME/CFS-SEID as described by the IOM in 2015.
Board members are:
  • Jim Lutey, President (Colorado)
  • David Steckel, Vice President (North Carolina)  
  • Mary Kelley, Treasurer (Colorado)  
  • Colleen Steckel, Secretary (North Carolina)
  • Jennifer Caldwell, board member (North Carolina)
  • Pam Lutey, board member (Colorado)

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The International Consensus (IC) Primer
Newly Posted Page "Primer/Cheat Sheets"
As part of our mission to educate patients and medical professionals, we are gathering materials that can be used to help patients better understand the unique issues seen in ME and help guide medical professionals to applicable research and treatment information.

The page includes the ME IC Primer as well as cheat sheets from the North Carolina/Ohio ME & FM Group (public on Facebook).  Those support group materials are a collaborative effort based on scientific information and patient input (not to be considered medical advice).   
Click HERE for the IC Primer and cheat sheets.

Remarkable Women: Colleen Steckel  
Colleen is a member of the ME International Board of Directors and Secretary of the organization.  She was interviewed last month by WNCT television in Greenville, North Carolina, as part of their Remarkable Women 2020 series.  Please watch the video of the interview as Colleen explains the disease called myalgic encephalomyelitis.
Click HERE for the video and click HERE for the news story at WNCT-TV.

Myalgic Encephalomyelitis Emergency Room Information
Here is some information compiled from patient input and expert documents to assist patients and caregivers in communicating with medical professionals. 
Click HERE for the link to this important article.

Advice for ME Patients About the Coronavirus
The coronavirus is getting much attention worldwide.  Here is some common sense advice from Dr Nigel Speight for ME patients.
Click HERE for the link to this article.

Severe ME : The Unexpected Losses 

When you suddenly collapse, disappear from your normal life and are labelled with a diagnosis of Myalgic Encephalomyelitis, aka "ME/CFS", you unexpectedly enter a no-mans

Click HERE for the article by Linda & Greg Crowhurst on the Stonebird website: the experience of Severe ME.
Myalgic Encephalomyelitis World Health Organization (WHO) ICD-10 ME Code Update   
The World Health Organization (WHO) has updated information for upcoming ICD codes.   
Bodily Distress Disorder (BDD) will now exclude diagnosis with the code G93.3 - ME, CFS and Post Viral Fatigue. (Note - ME code will become 8E49).  

This exclusion indicates that someone who has been diagnosed with BDD will not be diagnosed with ME (code G93.3).  The key for patients to get proper treatment will continue to be for patients to get a proper diagnosis of ME and not BDD.
Prior to this 2019 update, the G93.3 code had "benign myalgic encephalomyelitis" as the label.
See this link showing that the term "benign" has been dropped.

It may take some time for that change to filter through to all of the versions.  

Governor's Proclamations for May 12

Many states offer Governor's Proclamations.  You might want to consider submitting a Governor's Proclamation in your state declaring May 12 as MYALGIC ENCEPHALOMYELITIS AWARENESS DAY or perhaps combine ME with other diseases such as fibromyalgia, lyme disease, etc.  Some states require 60 days, which means they need to be done by March 12.
Click HERE for information on how to submit a Governor's Proclamation.
Myalgic Encephalomyelitis "Invasive Cardio Pulmonary Exercise Test"    
From Dr. Michael VanElzakker:  "Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) represents a challenging intersection of immunology, neurology, endocrinology, and other fields.  Investigating such a broad and complex condition requires access to technology, instrumentation, and methods that are not available at the average doctor's office."
Dr. Michael VanElzakker is a Martinos Center research fellow affiliated with Massachusetts General Hospital, Harvard Medical School, and Tufts University.  He has a background in neuroendocrinology and clinical neuroscience and is known for an influential hypothesis of ME (CFS) that centers on the intersection between the nervous and immune systems.  
Their ongoing research program includes three projects:
1. Neuroinflammation scanning
2. Scanning before and after exercise challenge
3. Targeting cellular activity in the nucleus of the solitary tract
This campaign and your contributions specifically fund their Exercise Challenge study investigating post-exertional malaise in ME (CFS).  Their fundraising goal reflects the total cost to enroll ten ME/CFS patients in their study.
Note: Michael VanElzakker states "Please don't donate if you are on disability or struggling."
According to a tweet from Dr. VanElzakker, "We do use ICC, and recruit from a clinician with 40+ yrs experience." 
Click HERE for more information and the fundraiser need.  

The purpose of ME (Myalgic Encephalomyelitis)  International is to support ME organizations, educate the general public, medical providers, and governments throughout the world , and support ME patients, caregivers, advocates, family and friends.

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The information provided at this site is not intended to diagnose or treat any illness.