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
Sue Mueller, Ohio, USA, Contributor
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Chat Rooms
This is a specific Facebook group that utilizes rooms as its sole purpose.
Click HERE for more information and to learn how to join.
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September 13 Board Meeting - Making Big Plans
The board's virtual board meeting on September 13, 2021 was dedicated to reviewing the organization's Goals and Objectives and identifying priorities for the next 3 years.
The two top priority goals are Empower/Educate Patients and Assist Needy/Severe ME Patients. Existing objectives were reviewed for these goals and committees were formed to identify details.
Other goals are Educate Medical Providers; Support ME Patients, Caregivers, Advocates, Family & Friends; Alleviate Loneliness; Advocate on Behalf of Membership (Outreach); and Support ICC Research. Work is being done on all of these goals.
By the end of this year, the board plans to finalize a 3-year plan and budget to implement the goals and objectives.
We would love to hear your ideas on what we can do to further these goals. Also, if you are interested in being on a committee to help with any of these goals, please contact [email protected].
Our next board meeting is scheduled for October 18, 2021.
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Website Updates
We've recently added Switzerland to our Organizations page. We highly recommend our German members to check it out as there is good information there.
A number of research papers have been added to our ME-ICC Studies page.
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Sue's Story
by Sue Mueller, Ohio, USA
It was a typical Sunday evening,
2 ½ years ago. My kids and grandkids were over, watching football and playing. I was in the kitchen, getting dinner ready for the 8 of us. From one moment to the next, I became weak, achy, had a headache. “Oh, I’ve got to lie down,” I told the kids. “I think I have a bladder infection.”
Many tests and consultations with my GP and the specialists he recommended, there was no indication of illness. Everything looked normal, but nothing was normal. Not knowing what was going on with me, I pushed myself to take a daily walk, practically dragging myself to the couch for the remainder of the day. I tried to keep up with my interests, seeing friends, pottery, yoga, pushing myself through my fatigue, getting worse and worse. Finally, a Neurologist at the Wexner Medical Center said, “I think you may have chronic fatigue syndrome. There is no treatment.”
I went online and found amazing FB groups, ME International, ME/CFS for the Slightly Irreverent, Abilify for ME/CFS, North Carolina/Ohio ME and FM Support Group and more. I learned about supplements, ME/CFS clinics, prescription drugs, exertion intolerance.
I got a heart rate monitor, gave up pottery, most in person friendship encounters (as many of us were and are again during CoVid), stopped all exercise except for some stretching and slow walking, carefully keeping my heartrate in the proscribed guidelines. I stopped watching my young grandchildren. I fought depression, watching too much tv, feeling life held little joy.
Last November, I scored an appointment at the ME Clinic at Stanford and got a prescription for Abilify and LDN. Slowly, with the changes in my daily life, I began to do a bit more. I no longer wake up feeling like I’ve run a marathon while having the flu; I can take a short walk; I can fix dinner most nights for my husband and I; I stay in touch with friends via text and phone; I enjoy the occasional meal out, rather I did before Delta. I’ve grown accustomed to my limitations, so I no longer grieve for the life I’ve lost, mostly. This is my life now, until science can make it better, and I believe it will.
I’m sure many of you have similar stories. When I read ME International was looking for someone to write a column for the newsletter, I thought I’d give it a try. I’d love to hear from you as to what you’d like to see, regularly.
Would you like a summary of the most recent hopeful research?
Would you like this to be a vehicle to share personal stories of life with ME?
How about a question-and-answer forum, in which I research answers to your questions?
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What's your story?
We welcome stories from any of our members. If you have a story you would like to share, please contact [email protected].
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Pulse Oximeter Project
ME International sent out 81 FREE Pulse Oximeters to our ME members that needed one so far this year.
The use of a Pulse Oximeter can be especially useful for people with ME (Myalgic Encephalomyelitis). From the ME IC primer: "A heart rate monitor can assist in keeping cardiovascular responses below the anaerobic threshold, resting heart rate is elevated in people with ME, and low blood volume can lead to elevated heart rate." It helps to understand how ME affects the heart rate; therefore, we will make available a flyer that will describe the importance of measuring heart rate for people with ME.
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."
We are continuing the project, so if you want and need a Pulse Oximeter, please reply to this email or [email protected].
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
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NIH Launches Mammoth Effort to Understand and Treat Long COVID
"Congress gave the NIH over a billion dollars 9 months ago to understand and find treatments for long COVID. The NIH has not been sitting on its hands since then. In fact, (for the NIH), it's been moving at warp speed.
This week, it revealed an impressive, highly integrated effort involving immense databases, biorepositories, hundreds of researchers, etc. all devoted to following, understanding, and treating the 40,000 people it will be following. Even before it knows what long COVID is about, it's begun the process of shoveling money into clinical trials.
Check out the effort that should play a major role in cracking long COVID and hopefully ME/CFS and other post-infectious illnesses." Cort Johnson Facebok post
Click HERE for Cort Johnson's article.
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Can an Enterovirus Travel Via the Vagus Nerve?
Click HERE for a study where it appears that an enterovirus in the gut can travel via the vagus nerve to affect the brain.
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NICE Guideline Protest
By Kathy Collett, W. Australia
A powerful show of unity was displayed on 20th September when online ME patients posted on Twitter to support the protest outside the NICE office in the UK. Speakers explained their frustration at the delay of releasing the new Guidelines and approximately 108 photos of long-term and severe patients were shown during the live streamed protest.
The protest arranged by Steve Topple and Nicola C Jeffery was a reaction to the paused guidelines due to influence by a small lobby group of doctors who maintain CBT/GET as treatments even though they have been discredited and destroyed the status of ME patients leaving many bedridden.
In the leaked revised NICE Guidelines, only GET was removed and this was what the lobby group was opposed to.
Their influence resulted in a planned round table meeting to be held in October. This has frustrated the ME community who have waited years for the revised Guidelines.
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Redox Imbalance: A Core Feature of ME/CFS and Acute COVID-19
"It’s too soon to know whether this hypothesis will prove fruitful. But if it does, it will be because a patient advocate and devoted mother took it upon herself to look for possible scientific explanations for ME/CFS, developed a very plausible hypothesis, wrote an article about the hypothesis that was accepted for publication, and brought the hypothesis to scientists in a position to pursue it. We need more such partnerships."
Click HERE for the article. The article discusses ME/CFS, but it is interesting in that it draws attention to a mother's strength and determination.
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How Brain Inflammation Causes ME/CFS
Jarred Younger, PhD, explains how hard it is to get to parts of the brain and that there are heated areas in brains of ME patients.
Click HERE for Dr. Younger's video. The video is nearly 3 years old and he discusses ME/CFS in his research, but it is definitely worth watching.
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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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