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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CONTENTS
- ME INTERNATIONAL NEWS
- Vision Statement
- Website Updates
- MEMBER BLOGS
- The Sloth in the Jungle
- Living with Myalgic Encephalomyelitis
- RESEARCH
- NCNED Publishes Novel MRI Findings
- Information About Anesthesia
- PATIENT CARE
- Requests for Assistance
- The Nightingale Research Foundation
- Are You a Disabled Australian?
- ADVOCACY
- May 12 Awareness Day
- IN MEMORIUM
- ME/CFS Memorial Page
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Vision Statement
The board of directors approved a Vision Statement for ME International. It is included in our Nonprofit Business Plan which is currently under review.
ME International’s VISION by the year 2027
ME International to be influential and respected by other ME, ME/CFS & CFS organizations and government health entities as well as a trusted resource for people with myalgic encephalomyelitis (ME). We would be a leader in promoting the importance of thorough screenings for all patients to ensure those who have ME are recognized as a distinct patient population and not lumped in with other patients who have different treatment needs.
Our website would consist of valuable resources for patients, medical professionals, researchers, organizations and journalists. We would provide information directly to medical professionals and bring awareness to medical associations. We would provide copies of the IC Primer to many more doctors and patients.
We would increase our membership from 500 (February 2022) to at least 5000. Our members would be active in the mission of ME International and would submit projects and ideas that would further our mission.
We would significantly expand on improving the everyday lives of those who suffer from ME. We would address educational needs to improve the overall status of the illness and individual assistance that impacts members on a more personal level. In addition, we would have someone available 24 hours a day and/or establish a helpline where ME patients can request resources or talk with someone knowledgeable to get help.
Our fundraising efforts would increase so we would be effective in grant writing and generating at least $50,000 to help at least 200 needy ME members through the emergency relief fund and other caring projects. We also envision looking into options for establishing a communal living environment for the benefit of those ME International members looking for communal living.
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Website Updates
The following website pages have recently been updated:
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The Sloth in the Jungle
by Kayla Doyle
Read Kayla's blog HERE where she describes the Neurocognitive Symptoms of Myalgic Encephalomyelitis with a touch of humor.
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Living with Myalgic Encephalomyelitis
by Mwasi Kitoko
"I had just lived my last day of work in life without knowing it."
The daily life of a woman living with chronic illnesses. Click HERE to read her story of being diagnosed with ME, all the daily struggles, and fights for disability insurance. You can translate the language on the upper right panel of the blog.
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𝗡𝗖𝗡𝗘𝗗 P𝘂𝗯𝗹𝗶𝘀𝗵𝗲𝘀 N𝗼𝘃𝗲𝗹 𝗠𝗥𝗜 F𝗶𝗻𝗱𝗶𝗻𝗴𝘀
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Dr. Leighton Barnden, Dr. Kiran Thapaliya and NCNED Researchers have just published an important neuroimaging paper on the “𝙑𝙤𝙡𝙪𝙢𝙚𝙩𝙧𝙞𝙘 𝙙𝙞𝙛𝙛𝙚𝙧𝙚𝙣𝙘𝙚𝙨 𝙞𝙣 𝙝𝙞𝙥𝙥𝙤𝙘𝙖𝙢𝙥𝙖𝙡 𝙨𝙪𝙗𝙛𝙞𝙚𝙡𝙙𝙨 𝙖𝙣𝙙 𝙖𝙨𝙨𝙤𝙘𝙞𝙖𝙩𝙞𝙤𝙣𝙨 𝙬𝙞𝙩𝙝 𝙘𝙡𝙞𝙣𝙞𝙘𝙖𝙡 𝙢𝙚𝙖𝙨𝙪𝙧𝙚 𝙞𝙣 𝙈𝙮𝙖𝙡𝙜𝙞𝙘 𝙀𝙣𝙘𝙚𝙥𝙝𝙖𝙡𝙤𝙢𝙮𝙚𝙡𝙞𝙩𝙞𝙨/𝘾𝙝𝙧𝙤𝙣𝙞𝙘 𝙁𝙖𝙩𝙞𝙜𝙪𝙚 𝙎𝙮𝙣𝙙𝙧𝙤𝙢𝙚”. The findings were published in the 𝗝𝗼𝘂𝗿𝗻𝗮𝗹 𝗼𝗳 𝗡𝗲𝘂𝗿𝗼𝘀𝗰𝗶𝗲𝗻𝗰𝗲 𝗥𝗲𝘀𝗲𝗮𝗿𝗰𝗵.
Read this important article HERE.
Importantly, the hippocampus plays an important role in cognitive functions such as learning and memory. It is also vital for spatial navigation and processing.
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Information About Anesthesia
"Anesthesia has adversely affected patients with CFIDS (also known as chronic fatigue syndrome and myalgic encephalomyelitis). The reason for this has been found. Recent research* funded by the National CFIDS Foundation, Inc. found that a substance, much like ciguatera toxin, is being produced in the body by a disease process in those with CFIDS/ME/CFS. Dubbed the “ciguatera epitope,” this research explains the danger of using any anesthesia that uses the sodium channel at the cellular level. Some anesthesiologists have had success blocking the sodium channel during anesthesia for CFIDS/ME/CFS patients."
Here is another article from The National Forum about anesthesia. Click HERE.
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Requests for Assistance
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
- Social Support
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 our 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.
Social Support includes participating in the ME International Facebook group, Chat rooms, and Caring Card Club.
HOW TO REQUEST ASSISTANCE
Members of ME International are welcome to request support. You will need to describe in detail your need and why it would make your life better. Please be aware that we may request copies of a photo ID, documentation of household income, household bills, lease or mortgage payments, etc. ME International will seldom provide direct cash payments unless such payments are deemed necessary. If you are interested in requesting assistance, reply to Admin@ME-International.org with questions or the following information.
Full Name
Address
Phone Number
Detailed description of request
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For information about The Nightingale Research Foundation, click HERE.
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Are you a disabled Australian?
You can submit a report for the Federal Government investigation. It's a good opportunity for us to be heard. The story you share in confidence will be protected and remain confidential. Register for a private session by 30 June 2022.
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May 12 Awareness Day
This year, 2022 marks the 30th anniversary of International May 12th Awareness Day. The idea originated with Thomas Michael Hennessy, Jr., the founder of Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases (RESCIND) (which is no longer active).
Click HERE to read more about May 12 Awareness Day.
The late patient and staunch advocate, Thomas (Tom) Hennessy Jr., realized the need to have a dedicated day to raise awareness for the diseases he championed for - myalgic encephalomyelitis (ME) and other complex immunological & neurological diseases (CIND) - such as fibromyalgia (FM), Gulf War illness (GWI), multiple chemical sensitivity (MCS), and chronic Lyme disease (CLD).
Read more in THIS blog post "In Memory of Thomas M. Hennessy, Jr."
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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.
ME International recognizes ME as defined by the International Consensus Criteria (ICC) as a distinct disease separate from CFS, ME/CFS, or SEID.
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Your copy should address 3 key questions: Who am I writing for? (Audience) Why should they care? (Benefit) What do I want them to do here? (Call-to-Action)
Create a great offer by adding words like "free" "personalized" "complimentary" or "customized." A sense of urgency often helps readers take an action, so think about inserting phrases like "for a limited time only" or "only 7 remaining!"
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