November 2021 Newsletter |
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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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Music
Did you know that there is music to listen to on our website, specifically selected for our members?
Click HERE for the video and music page.
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Your Ideas are Needed
One of the priority goals of ME International is to Assist Needy/Severe ME Patients. Members encounter significant life disruptions that affect their daily ability to function and who need social connection, relevant information, and/or financial resources. These patients are housebound, need compassionate human contact and support, and may be resource limited.
Our mission recognizes that each patient has unique needs. Our approach is to understand their needs and to identify resources that will help. We encourage self-help when the patient is able, recognizing fully that some severely ill patients may not have the ability or the resources. We have identified 3 main areas of focus:
· Emergency Relief
· Patient Clinical Support
· Comfort Gifts
The Emergency Relief Fund is a pilot project where members who are truly in need will be helped. Resources that already provide those services will be identified and communicated to the person in need. Support needed can include housing repair, grocery shopping/meal delivery, financial assistance for paying bills (rent/mortgage, utility bills, taxes), cooking and cleaning assistance, and home health assistance.
Patient Clinical Support involves providing patients with handouts to use when meeting with doctors, providing pulse oximeters and other devices to track data, and information about and potential financial coverage for specific lab tests not covered by insurance. An example is the pulse oximeter project.
Comfort Gifts include providing comforting connections and help through Facebook chat rooms, comfort gifts, meaningful craft activities, and access to other activities of interest to the patient that can provide temporary distractions from one’s ongoing and often overwhelming challenges.
We would like YOUR ideas and suggestions to personally help our ME members in need. Please provide your comments to [email protected].
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NICE Guideline Published
You are probably already aware that NICE (National Institute for Health and Care Excellence) in the UK published the final Guideline for Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management on Friday, October 29, 2021.
We suggest that our members read the Guideline and the recommendations. You might pay particular attention to the sections on Graded Exercise Therapy (GET), Cognitive Behavior Therapy (CBT), and diagnostic criteria. This Guideline has implications worldwide, not just in the UK.
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Pulse Oximeter Project
ME International has 18 pulse oximeters still available. If you want one and have not already received one, please reply to this email or [email protected].
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 describes 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. Maria B. received hers recently and said: "I write in thanks for the pulse oximeter that you sent. This is such a great program that ME International organized: actual, practical help for ME patients, whose illness often causes
circulation issues and lower oxygen levels. I am very happy to have the pulse oximeter and the numbers it gives me on my SpO2 level and heart rate."
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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Can Enteroviruses have a role in ME?
Dr. John Chia
Amy Proal, PhD, conducted a fascinating interview with infectious disease physician, Dr. John Chia, discussing enteroviruses as a cause of myalgic encephalomyelitis. Dr. Chia has spent decades studying the role of persistent enterovirus infection in ME/CFS. Watch the interview on YouTube HERE or listen on an App like Spotify HERE.
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ME/CFS International Conference 2021
The National Centre for Neuroimmunology and Emerging Diseases (NCNED) is hosting their annual conference on November 16-17, 2021 in Gold Coast, Queensland, Australia.
You can attend the conference virtually, which is excellent news for anyone unable to travel. The conference will NOT be recorded.
Tickets for two days of Virtual Attendance are now free.
This information is from their website: “This hybrid conference includes selected keynote international and national speakers from USA, UK, New Zealand, Australia, and Europe.
- Conference topics include: International ME/CFS Perspectives
- MRI Imaging: Application in ME/CFS
- Ion Channel Physiology: Application in ME/CFS
- Patient Perspectives & Challenges
- Clinical Presentations & Treatments
- International Research Innovation
- Research Evaluation & Translation
- COVID19 & ME/CFS
Conference Centre: Sea World Resort and Conference Centre, Gold Coast, Australia”
Prof. Warren Tate and his team are performing molecular studies of Long COVID and its relationship to ME/CFS. He will be presenting at the conference and we understand that his daughter has ME.
PLEASE NOTE: Those in Australia viewing from other states please be aware Queensland does not have daylight saving. For those wanting to watch from other countries, please check the time difference with the World Clock or check your area for the starting time. Due to the time zones, the conference will start on 15th November in Europe and the USA for example. You can check the times in The World Clock by clicking HERE.
Thanks to Kathy Collett for contributing this article.
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A Brief History of Myalgic Encephalomyelitis
The Nightingale Research Foundation's October 2021 newsletter gives a knowledgeable history of ME. It is very much worth reading especially if you are not aware of the history. Click HERE for the newsletter.
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Potential Implications of Mammalian Transient Receptor Potential Melastatin 7 in the Pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Review
The findings were published in the International Journal of Environmental Research and Public Health.
The transient receptor potential (TRP) superfamily of ion channels is involved in the molecular mechanisms that mediate neuroimmune interactions and activities. Recent advancements in neuroimmunology have identified a role for TRP cation channels in several neuroimmune disorders including amyotropic lateral sclerosis, multiple sclerosis, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). ME/CFS is a debilitating disorder with an obscure aetiology, hence considerable examination of its pathobiology is warranted. Dysregulation of TRP melastatin (TRPM) subfamily members and calcium signalling processes are implicated in the neurological, immunological, cardiovascular, and metabolic impairments inherent in ME/CFS. In this review, we present TRPM7 as a potential candidate in the pathomechanism of ME/CFS, as TRPM7 is increasingly recognized as a key mediator of physiological and pathophysiological mechanisms affecting neurological, immunological, cardiovascular, and metabolic processes. A focused examination of the biochemistry of TRPM7, the role of this protein in the aforementioned systems, and the potential of TRPM7 as a molecular mechanism in the pathophysiology of ME/CFS will be discussed in this review. TRPM7 is a compelling candidate to examine in the pathobiology of ME/CFS as TRPM7 fulfils several key roles in multiple organ systems, and there is a paucity of literature reporting on its role in ME/CFS.
View the full article 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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