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
- Card Caring Club
- Website Updates
- Pulse Oximeter Project
- NEW RECIPE
- GUEST BLOG
- PATIENT CARE
-
Comorbidities and Calamities
- Radio Station Interview
- Dental Care
- Petition - UK
- NEWS FROM SOUTH AFRICA
- Tidbits From The ME CFS Foundation South Africa
- IN MEMORIUM
- ME/CFS Memorial Page
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Card Caring Club
We first advertised this program in January 2022, but with many new members, we want to share the opportunity to join this club.
The Card Caring Club is for those that would like to exchange cards or gifts for birthdays or other occasions, like Easter, etc.
You will be notified if we find a member that needs some cheering up or is having health problems. You participate when you can. Just do what you can for those in the club.
If you want to participate, just send us your name, complete mailing address, your birthday, and the email address that you want to use. You must agree to having your information shared with other members of the club. If you want to join the club, send your information to Admin@ME-International.org.
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Pulse Oximeter Project
This is information for our new members and a reminder of existing members about our Pulse Oximeter project.
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."
ME International has 6 Pulse Oximeters still available. We will order more if the demand is there. If you want one and have not already received 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
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How to Make Pizza Dough
How to Make Pizza Dough from Scratch the ME Way.
Something many can relate to...
Read the step by step instructions by our member, Cynthia Uribe, HERE.
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Let Me Dream
One of our members, Mwasi Kitoko, published the testimony of a woman, Hélène F., with ME in France. A very touching text that perfectly reflects our very difficult living conditions. She is almost sure that you will recognize yourself....Let's make ME visible by all possible means! The title is "Let me dream." The blog is written in French, but don't worry, you have access to a translator on the right side of the blog.
About Mwasi Kitoko: I am a woman who has been living with myalgic encephalomyelitis for 17 years. I live in Montreal, Canada. I had to fight in court against my insurer for 5 years. In order to vent and inform about this disease, I started this blog. My goal? To make ME visible through my words, information, experiences or articles relevant to this disease. I use a pseudonym to protect my identity and that of my family. My blog is ad-free and reaches multiple readers around the world: USA, South America, Europe etc.
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Comorbidities and Calamities
by Kathy Collett
Having had ME long term, l have seen many changes from discoveries to reinvention. It has shocked me to find very impressive research almost sink without a trace only for others to take the credit for it years later when the original researchers had dedicated years to their work and had shared it previously with doctors and patients.
To add to the disappointment, some have reframed Myalgic Encephalomyelitis by adding on other disorders. This has been confusing and blurs the lines by introducing a bewildering array of unrelated conditions. Although Fibromyalgia and Repetitive Strain Injury apply due to the neurological and muscular connection and are considered overlapping, by reframing ME and adding comorbidities, it does not serve patients well. There is already a long history of deliberately blindsiding those inflicted with ME and this has been detrimental to advancing the progress.
The CDC's list of comorbidities connected to this illness include:
Fibromyalgia
Irritable Bowel Syndrome
Anxiety
Depression
Allergies and chemical sensitivities
The Canadian Consensus Criteria includes (in addition to the above):
Myosfascial pain syndrome (MPS)
Temporomandibular joint syndrome (TMJ)
Interstitial cystitis
Raynaud's phenomenon
Prolapsed mitral valve
The International Consensus Criteria (many of the above are included in both):
Hashimoto's thyroiditis
Sicca
Dr Jay A Goldstein also included:
Dyspnea
Sensory gating*
Panic disorders
The above have been listed as long-standing comorbidities in association with ME and would be recognised by patients. They are not newly added unlike what has happened in recent years.
In my case, Dr. Goldstein diagnosed ME with Repetitive Strain Injury and Fibromyalgia as overlapping.
*Neural processes of filtering out redundant or irrelevant stimuli from all possible environmental stimuli reaching the brain. It prevents an overload of information in the higher cortical centres of the brain.
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Kathy told us about an interview on Radio Station 6PR on #pwME #MyalgicEncephalomyelitis.
Tod Johnston spoke with Anne Wilson, CEO of Emerge Australia. Click HERE to listen to the broadcast.
Kathy did let them know #ME is the preferred name.
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Dental Care
Evan Spivack, DDS, a professor and leader of the Special Care Treatment Center at the Rutgers School of Dental Medicine, authored the 2020 report "Dental Care of the Homebound Patient with ME/CFS."
"Overall, care for the homebound and bedbound population with ME/CFS issues has been under-addressed in the literature to date and there has been little consideration of the oral health needs of this population. Evaluation, diagnosis and treatment of dental concerns may be hindered by many of the diverse symptoms of ME/CFS. The present paper utilizes the International Consensus Criteria (ICC) in discussing treatment considerations for the most severely affected patients with ME/CFS, both in oral evaluation and active care. While no specific dental pathology is linked to ME/CFS, proper care for the patient so affected must take into account the disorder’s symptoms and severity."
It may be beneficial to provide this report to your dentist prior to your next treatment. See the report HERE.
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Petition - UK
Anyone in the world can sign.
"We demand the creation of a new system to report non-pharmaceutical 'treatment' harms." While this is not specific to only Myalgic Encephalomyelitis, it would be an important step forward to protect #PwME from harmful Graded Exercise Therapy (GET).
Click HERE for the article and to sign the petition.
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Tidbits From The ME CFS Foundation South Africa
Retha Viviers, Founder and Director of ME CFS South Africa, provided us with some noteworthy items of interest.
New Website
Check out their new website HERE that was launched towards the end of 2021. The focus was easy to read for patients.
Retha's Blog
Retha is still blogging on the difference on how patients are treated having ME compared to having cancer. For interesting topics, click HERE.
The latest topics:
- Can chronically ill people have a vision for the future and if yes how can we do it?
o “My plea to you as a healthy person is to not assume, to not judge! We don't pretend we are ill, we pretend we are okay and that is a full time job! We won't bore you with details of how awful we actually feel, just know that showing up at an event is a massive sacrifice but also an act of love for you, our loved ones and friends. We still want to be part of your life, we want to be there on all your big days!”
- Stealing more than just your health (an extract – this is about parenting)
o “We are unknowingly being punished for being ill. In the end we lose our children to a large extent as well. The places we end up living are no longer HOME for our children and their children. No more family events, no more Christmas festivities, no more sleep overs, just nothing. It feels as if all their childhood memories have been erased, as if it never happened.”
- Many doctors aren't open to info outside their frame of reference & then they judge patients
o “There is so much scientific studies out there, so much progress has been made and since the start of Long Covid there is renewed interest in post viral fatigue illnesses. Why the resistance to change from the medical fraternity side? From an advocacy perspective we as a Foundation and ME community try to reach out to as many as possible health care practitioners and share the latest research and treatment guidelines.
o We can only hope that more and more health care practitioners will accept the science and amend their views on illnesses such as ME/CFS, Long Covid, Fibromyalgia, etc.”
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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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