February 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   James.Lutey@ME-International.org  


ME International - First Board Meeting
ME International had its first board meeting by conference call on January 23, 2020.  Board members were confirmed and officers were elected.  The bylaws and conflict of interest policy were adopted.  Two committees (Newsletter and Website) were established. We have established a bank account and discussed other items that need to be completed.
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. The purpose of ME International is to support ME organizations, educate the general public, medical providers, and governments throughout the world, and support ME patients, caregivers, advocates, and family and friends.
Current 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
Development of the International Consensus Primer for Myalgic Encephalomyelitis (ME)  
The IC Primer was created by a panel consisting of clinicians, research investigators, teaching faculty, and an independent educator, represent diverse backgrounds, medical specialties and geographical regions. Collectively, the members of the panel have:   
*diagnosed and/or treated more than 50,000 patients who have ME
*more than 500 years of clinical experience  
*approximately 500 years of teaching experience
*authored hundreds of peer-reviewed publications, as well as written chapters and medical books  
*several members have co-authored previous criteria.
Panel members contributed their extensive knowledge and experience to the development of the International Consensus Criteria and this Primer.       
Click HERE for the link to the IC Primer.

Basics for Treating ME 
The PRIORITY for any doctor treating an ME patient is having a good understanding of those things that will exacerbate the illness in order to be part of the solution and not part of the problem.
Click   HERE for the link to this important article.

Caring for Someone With Severe ME

"CARING - You will become greater than you ever thought possible, because you really do have to reflect upon what is important to you in your life and how to be empowered." Greg Crowhurst

Useful information about Severe ME and practical materials including books on caregiving can be found HERE on the Stonebird website.
World Health Organization (WHO) / International Classification of Diseases (ICD)   
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.

In the upcoming ICD codes, ME is set to remain in the "diseases of the nervous system" same as it has been.
G = Diseases of the nervous system
G93 - Other disorders of the brain
G93.3 - Post viral fatigue - inclusions benign ME.
8 = Disease of the nervous system
8E = Other disorders of the the nervous system
8E49 = Post viral fatigue
Inclusions - benign ME (and Chronic Fatigue Syndrome)

Note: The US has its own set of codes which are revised by the CDC. There was a proposal to add SEID and move ME to a different number. See blog HERE for details.
For background information on WHO/ICD, please click HERE.    
Click HERE for the WHO/ICD Revision. 

"Elevated blood lactate after moderate exercise was reported in some of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."
The study enrolled retrospectively all adult patients aged ≥18 years who met the International Consensus Criteria (ICC) 2011.                             

ME International supports the adoption of the ME label for those things pertaining to the ICC. This study used the label ME/CFS, but the patient selection clearly indicates this applies to the ME-ICC patient group.                 
Click HERE for the article.
To find more science based on the ICC, click HERE.

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