April 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. 
 
Sincerely,

Jim Lutey, Editor   [email protected]  
 

  
 
PATIENT CARE
 
 
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 Support 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.

 
Myalgic Encephalomyelitis (ME)Testing & Conditions to Rule Out 
 
Here is some great information from the International Consensus (IC) Primer  (#ICPrimer) and other science based information which physicians can use to rule out ME based on the International Consensus Criteria (ICC).  Also, there are certain lab tests to help confirm an ME diagnosis.
 
Click HERE for the link to this important article.

 
Coronavirus (COVID-19) & ME/CFS  
 
This is a video by Dr. Nancy Klimas.   She isn't ICC specific and uses the ME/CFS term, but there is a lot of useful information appropriate for now. 
 
Here are the topic sections of the video:
  • 0:33 Risks of exposure
  • 1:28 What you should do
    • Wash hands, disinfect, social distancing, etc.
  • 2:30 Virus lifecycle
  • 3:38 Products that may help prevent
    • Xylitol based nasal spray (may be easier to find in the allergy aisle)
    • Cellulose spray (Canada & Europe)
  • 4:50 Asthmatics
  • 6:45 Supplements (dosage and warnings in video)
    • Vitamin C
    • NAC (N Acetyl Cysteine)
    • Co Q10 in the ubiquinol form
    • Liposomal glutathione
    • Carnitine
    • Methyl B12
    • Methyl Folate
  • 9:34 Antivirals (dosage and warnings in video)
    • Isoprinosine (U.S.)
    • Immunovir (Canada & Europe)
  • 11:55 Don't Panic
 
Click   HERE for the video.

 
ADVOCACY
 

#PwME4ICC Demand US Health Agencies Recognize Myalgic Encephalomyelitis as Defined by ICC


Click HERE to learn why this organization promotes the ICC diagnostic criteria for ME patients.  Anyone in the world can sign the petition because what happens in the US affects everyone around the world.  So far, well over 7400 have signed the petition.    
 
 
SEVERE ME NEWS   
 
 
25% ME Group 

The 25% ME Group is a nationwide charity.  They campaign to raise awareness of ME and provide services to people affected by severe ME (Myalgic Encephalomyelitis).  Click HERE for their main website.
 
This year marks the 25 year anniversary of the 25% ME Group , the only charity concerned specifically with the needs o f the severely affected . 
 
Severe ME Awareness Day is on August 8.   
 
Click HERE for information about the 25% ME group Severe ME day project.
 
 
SCIENCE     
 
 
COVID-19 and Myalgic Encephalomyelitis  
 
During this time of heightened awareness about those at risk for COVID-19, it is important to understand that natural killer (NK) cell function in those with ME may be decreased.  See  
ME IC Primer page 5 which states "decreased natural killer (NK) cell signalling, function, & cell cytotoxicity". 
 
A recent science article discusses COVID-19 and NK cell function. This is concerning because of the known NK cell function issues seen in ME - Functional exhaustion of antiviral lymphocytes in COVID-19 patients. 
 
" Cytotoxic lymphocytes such as cytotoxic T lymphocytes (CTLs) and natural killer (NK) cells are necessary for the control of viral infection, and the functional exhaustion of cytotoxic lymphocytes is correlated with disease progression..."
 
The current parameters for getting a COVID-19 test often include fever.  As ME includes a dysfunctional immune system, many pwME have a lower than normal base temperature and may not exhibit a fever when ill.  Doctors may be more willing to recognize a fever if there is a baseline record of lower than average temperature.  The information in our recent blog may be helpful to share with medical professionals if testing is denied due to lack of fever. 
 
 
For information on the COVID-19 virus that is geared specifically to those with ME, see the blog HERE on the ME International website.  This information is being updated daily.  

 
OTHER NEWS    
 
ME Global Chronicle
 


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