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,
Ona Abizu, Euskadi, Spain, Contributor
Jennifer Caldwell, N. Carolina, USA, Proofreader
Kathy Collett, Western Australia, Contributor
Jim Lutey, Colorado, USA, Designer, Editor
David Steckel, Illinois, USA, Proofreader
Sue Mueller, Ohio, USA, Contributor
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We hope you have a happy and healthy 2022!
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CONTENTS
- ME INTERNATIONAL NEWS
- Thanks
- Chat Rooms
- Red Up-Arrow
- PATIENT CARE
- ME and CFS in POTS Patients
- How Can We Help ME Patients?
- The Illness That It's OK To Mock
- IN MEMORIUM
- ME/CFS Memorial Page
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Thanks to all of our volunteers and those that donated their time and money to ME International in 2021. It helps us to achieve our goals and we couldn't do it without you. We appreciate all that you do! |
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Chat Rooms
by Heather Seckinger, Board Member
The ME International chat room is a place for sufferers to engage with others in a video call setting similar to Zoom. We’ve settled on this format for now as it’s easy and convenient for most people. It has its own Facebook page that utilizes the “rooms” function. People join the page and then can enter when there’s a room open or they’re welcome to create their own room. People have the option to turn their cameras on or off and also mute and just listen along.
It started in March of 2021 and currently has 276 members. I expect that number to increase. There are a little over 15 regular members but we have probably had 25 people that have participated at least 1 time. We have participants from the USA, UK, South Africa, Canada, Australia, UK, Norway, The Netherlands, New Zealand and India. On average we have about 6 participants but have had days with 12.
The regularly scheduled rooms are as follows:
Monday-Sunday 1-3 pm EST; I host most days.
Tuesdays 9-11 am EST
Wednesdays 5-7 pm EST
Fridays 7-9 pm EST
I’ve received only positive feedback. It has created friendships that people foster outside of the chat group. I know many people speak one on one and have developed a support system that they use on their personal Facebook pages. A few of us recently watched a movie “together” on our own televisions and chatted through messenger while we watched.
It is accomplishing our goal of getting to know our members and I believe could be instrumental in informing us about the needs of the community.
We welcome more participants on the Chat Rooms. If you have trouble getting on a room, contact me at [email protected]g or message me on Facebook.
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Red Up-Arrow
What in the world are we talking about? Here's a tip from our webmaster, David Steckel. Many haven't noticed that in the bottom right corner of many of our longer webpages is an up-arrow button. You can use this to quickly scroll back to the top of the page and access the menu.
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Myalgic Encephalomyelitis and Chronic Fatigue Syndrome in POTS Patients
Click HERE for this podcast interview with our own board member, Colleen Steckel.
"Colleen Steckel went on a camping trip years ago, and started to feel ill. She was pregnant at the time, and thought that was the cause. Or maybe she has the flu. Decades later, she still suffers... Colleen is an activist in the myalgic encephalomyelitis (ME) community, and was later also diagnosed with POTS. She is a member of the Board of Directors for ME-International.org, and brings hope as she describes both diagnosis and treatment options for people with ME."
Standing Up to POTS is a non-profit organization dedicated to improving the quality of life for people with postural orthostatic tachycardia syndrome (POTS) through research, advocacy, and support.
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How Can We Help ME Patients?
Nightingale Research Foundation
M.E. Research Guidelines
From the article: "Any rational research begins with understanding the disease that the M.E. patient is suffering from. There is an incredible lack of real knowledge concerning M.E. among (a) physicians, (b) some M.E. groups as well as (c) some patients. This begins with the reality of the name.
a. Most physicians believe M.E. patients have anxiety neurosis and not really ill.
b. Some M.E. groups do not know their M.E. history or even believe that M.E. is a brain injury caused by enteroviruses. If they don’t realize this is the only cause and location of the M.E. patient’s chronic illness, they are not advising the M.E. individuals correctly."
The article discusses that M.E. and paralytic polio are caused by the same enteroviral family of viruses and M.E. is really the new polio or non-paralytic polio.
Learn what Nightingale is doing to help M.E. patients by clicking HERE.
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The Illness That It's OK To Mock
Blog By Paul Mc Daid, UK
Paul is a member of ME International and shared this blog with us. It is on our website HERE. You'll want to read his blog that raises awareness about ME with a sense of humor.
His more detailed blog that can be found HERE.
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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.
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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.
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