March 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. 
 
Sincerely,

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

  
 
TICKLING YOUR FUNNY BONE  
 
 
  
Pacing is good advice.  
 

 
ME INTERNATIONAL NEWS 
 
 
New Board Member   
 
Heather Seckinger was approved by the board to become a new board member.   
 
 
Heather applied for board consideration in January 2021.  The board had a Zoom "Meet and Greet" with her on February 16, and immediately voted to accept her on the board.  
 
Heather lives in La Quinta, California.  She has ME, but she has been involved in a carer support group for people with ME and has contributed to other nonprofits.  She is enthusiastically looking forward to being a part of the ME International board and committees.  Check out her bio on our website HERE.    

 
Synopsis of January 20, 2021 Board Meeting  
 
In an effort to keep our members informed of ME International activities, here is a synopsis of ME International's January 20, 2021 board meeting.  The synopsis was prepared by our secretary, Colleen Steckel.  Colleen also prepares the full minutes of board meetings and the minutes are approved at the following board meeting. 
 
SYNOPSIS:

All board members present.
Topics covered included:
  • President's report noted that ME International has made a lot of progress in 2020. Offered thanks to everyone for all the work.  Noted that pay isn't that good, but work is satisfying and looking forward to making 2021 even better.
  • A marketing committee is being formed.
  • Treasurer reported that ME International would be reporting to the IRS using a 990EZ as income for 2020 was below the threshold that would require a more detailed filing.
  • PULSE OXIMETER - 51 sent so far. Board discussed asking for more donations to continue sending out pulse oximeters to members. It was decided to send out the next batch in May.  Information is found on the website under our donation tab.
  • MEDICAL EDUCATION - work continues on a 2 page medical practitioners guide for diagnosing and treating ME based on the IC Primer. This handout is close to completion.  Discussion covered different ways to get information into the hands of doctors, including emailing, faxing, hand deliver (by patient) and by mail.
  • LONELINESS - Board discussed the challenges of ME patients and the importance of addressing loneliness. Board discussed making alleviating loneliness another goal for the organization.
  • PURSUING GRANTS - Board discussed looking into various grants.
  • IT UPDATE - New material continues to be added to website.  Views on the website are global with top four countries being US, Germany, UK, and Australia.
  • COMMUNICATION - Discussed better communication as the organization grows as well as communicating more to our members about what is happening in the organization. It was decided a summary of each board meeting could be posted for anyone interested.
  • The Annual Report was discussed and approved for distribution.
NEXT MEETING SCHEDULED FOR APRIL
 
Also, click on THIS link for our 2020 Annual Report.  Items include board members, website, mission statement, goals and objectives, position paper and finances.
 
We are planning for 2021 to be even better and to be able to provide more benefits for our members. 

 
GuideStar Seal of Transparency   
 
ME International now has a GOLD GuideStar Seal of Transparency.  
 
 
 
GuideStar Seals of Transparency indicate that a nonprofit has provided key information to its GuideStar profile.  This recognition shows commitment to transparency.  The seal is displayed at the bottom of our website pages. 

 
Website Updates    
 
ME International has a new page -  
 
The page has a paper consisting of articles or studies with information about possible biomarkers to diagnose ME as a distinct disease (G93.3). 
 
 
 
 
 

 
PATIENT CARE
 
 
Medical Practitioners Guide  


ME International developed "A MEDICAL PRACTITIONERS GUIDE FOR DIAGNOSING AND TREATING MYALGIC ENCEPHALOMYELITIS (ME)."   

 
It is based on the International Consensus Criteria (ICC) and the International Consensus Primer (ICP).  The guide is a two page information sheet which introduces doctors to the value of the ICP.  The goal was to create an easy to read information sheet to help doctors better care for ME patients.
 
Click HERE for the color version of the guide and click HERE for the blog on our website that explains the use of the guide.  As mentioned in the blog, we would appreciate your feedback.    
 
 
 
Please let us know if this document helped you do any of the following:
  1.   Helped you better understand ME
     
  2.   Empowered you to seek better professional care
     
  3.   Improved your relationship with your doctor
     
  4.   Led to more lab testing
     
  5.   Led to improved treatment

 
Pulse Oximeters        
 
ME International sent out 51 FREE Pulse Oximeters to our ME members that needed one.  Two went to Australia, 22 to Canada, 2 to Norway, 12 to the UK, and 13 to the US.  We have heard from many of our members that wanted one and they were very appreciative of the generosity of this program.  Clair H. was one of the first to receive hers and said: "I would just like to say a very big thank you for the Pulse Oximeter that I have received today.  It will assist me enormously with observing my heart rate and oxygen levels throughout the day and taking a break when needed.  I think this is a great donation for those suffering with ME."
 
If you received one of the Pulse Oximeters, please let us know how it has helped you so we can demonstrate to potential donors how important it is to continue to provide more of the devices to our members. 
 
We intend to continue the project providing we have donations to cover costs of the devices and mailing.  We are keeping a waiting list of members that want and need a Pulse Oximeter.  
If you have not already requested one, please reply to this email or Admin@ME-International.org. 
 
Donations can still 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

 
Dr. Byron Hyde Update  
 
Dr. Hyde's latest newsletter discusses his recently published book Understanding Myalgic Encephalomyelitis, which helps to better    understand the history of ME and the connection to polio and the recognition of how it is contagious.  His newsletter also has a message regarding Rob Wijbenga who is ill with COVID-19 and the importance of staying safe, and more.   

 
WHAT YOU CAN DO     
 

Membership  
 
ME International currently has about 280 members worldwide.  Our membership base has grown tremendously over the last year, but we would like to further grow our membership which will help us apply for and secure grants in the future.  More members can also help make our organization more visible and provide more influence in working with other organizations and governments.  All of our members do not need to have ME.  We have many members that are caregivers, friends of people with ME, or ME supporters.  Please share this need with your family and friends so we can continue to grow our membership.

 
IN MEMORIAM    
 

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 support ME organizations, educate the general public, medical providers, and governments throughout the world, and support ME patients, caregivers, advocates, family and friends.
  

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