September 2021 Newsletter
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Greetings!
Welcome to our #MEAction Colorado 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,
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The Arts for ME
by Julia Miele, Executive Director, #MEAction
I grew up in the arts. I played the piano in first grade, danced ballet from age 6 to 20, and played the clarinet in the high school band. I even ran an arts nonprofit for five years, helping low-resourced youth in South Los Angeles and Watts gain access to high-quality dance education during and after school. And then there’s my 17-year-old daughter, who has played the violin since the first grade and now with two orchestras, takes ballet and pointe classes, and loves to paint – a tremendous likeness of Ziggy Stardust adorning her bedroom wall. Art has been an invaluable creative outlet for both of us – it helps me to relax, my daughter to explore.
With all of this, one would think that I’ve seen, felt, and experienced it all. On August 8 – Severe ME Day – I discovered I was wrong.
Started by the 25% Group, Severe ME Day honors the strength and spirit of those suffering from severe ME and remembers those who have left this world because of it. The importance of recognizing the decades of suffering and misrepresentation people have endured without acknowledgement and support cannot be overstated.
This year, #MEAction wanted to speak out about this injustice through art, to me, the most powerful form of self-expression and beauty. On August 8, through our Severe ME Artists Salon, we displayed 300 pieces of art created by over 180 people with severe ME – giving them the space to share their journey with the larger community, and to be seen.
The 40-minute video of the artwork (view it HERE) is breath-taking. Each painting, sculpture, dance piece, photograph, cross-stitch tells a vibrant and powerful story of a person with severe ME – Individuals suffering every day more than I could ever imagine creating pieces of art with more beauty and emotion than I have ever seen.
But enough from me, see for yourself here.
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You can view the full gallery HERE.
What made #MEAction’s Severe ME Artists Salon so impactful for me was the breadth and dept of life experiences displayed before my eyes in a blink. I was reeling. Filled with emotions that were both melancholy as I contemplate what people with severe ME live through every day, but also uplifted at the deepness of self-expression they brought to life for the benefit of everyone watching. Our sincerest gratitude to all who participated!
All of us at #MEAction look forward to the many Artist Salons to come!
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Research Study
Hello! If you are an adult age 18 and older and have or have had school-approved disability accommodations in a US college/university, then you are invited to participate in a research study conducted by a postdoctoral researcher at the University of Arizona! By participating in this study, you will be contributing to the knowledge base of the experiences of disabled students in college/university contexts. You will be asked to participate in an online survey that is estimated to take between 5 and 30 minutes. Participation is voluntary, and participants who complete the survey have the opportunity to enter a raffle to win a $100 Amazon gift card. To access the survey, please click HERE.
An Institutional Review Board responsible for human subjects research at The University of Arizona reviewed this research project and found it to be acceptable, according to applicable state and federal regulations and University policies designed to protect the rights and welfare of participants in research. Study ID 2108172404
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The Bateman Horne Center
By Tom Strobel, ME Action Colorado Steering Committee Member
Research and Why It Matters at the Bateman Horne Center in Salt Lake City
Last month we did an overview of the clinical, educational and research components of work being done at the Bateman Horne Center in Salt Lake City. BHC is one of too few clinics in this country devoted to ME/CFS and Fibromyalgia.
I mentioned that there was an ongoing effort to define core signs and symptoms of ME/CFS. This is important for many reasons. For one, the pharmaceutical industry is interested in having quantifiable criteria for measuring the effectiveness of any drug they may contemplate for ME/CFS. For this they need quantifiable data and BHC research efforts have sought to provide that data.
· Being upright. It did not take long at BHC to observe that the more severely ill the patient, then the less time that patient could tolerate standing and the more orthostatic intolerance they experienced. How to quantify this? In collaboration with the University of Utah, they developed a wearable device for patients that recorded posture and hours upright to relate illness severity. This data helps in clinical trials to measure an intervention’s effectiveness.
· Brain Fog-Quantifiable? Brain fog is one of the most troublesome symptoms to our patients. Every BHC patient and research participant plays a short series of brain games to test their brain “vital signs”. There is a mobile brain health app to test reaction time and attention and this app helps objectively measure cognitive impairment and BHC is using “brain vitals” to monitor and track potential interventions.
· Sleep. Another troublesome symptom (to say the least…) for those with ME/CFS. Sleep studies have not been helpful enough because they are short and occur in a sleep lab. BHC is conducting clinical research on unrefreshing sleep using wearables that track all sleep stages and can gather data over weeks and months at a time. This approach gives them the opportunity for getting more longitudinal data on sleep as well as objectively measures changes in sleep for clinical trials.
There is a lot more about this research, including links to the published studies and you can check them out at the Bateman website HERE.
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Upcoming Calendar of Events in Colorado |
September 15, 10:00 Mass. Dept. of Public Health panel: Invisible Disabilities: Long Covid & Other Post-Infectious Chronic Illnesses. Presented by the Massachusetts Dept of Public Health, in conjunction with the Mass. ME/CFS & FM Association. On this diverse panel: A black woman Long COVID advocate, a Latina ME/CFS activist, and an agender/transgender Lyme advocate. A Mass. government official is the event facilitator and we also have an infectious disease expert joining. Register at www.bit.ly/3AqMriT, Zoom at https://bit.ly/2TZERMA.
If you have any questions or have any upcoming events for next month's calendar, please contact John Kelty at john.kelty@meaction.net.
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Colorado advocates for people with Myalgic Encephalomyelitis, their caregivers and allies. Join our FB group MEACTIONCO. Follow us on
Twitter and Instagram @MeactionCO
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Disclaimer:
Newsletter volunteers are NOT medical professionals; we are patients, allies and caregivers sharing our own experiences. What you do with the information offered is at your own risk and is your responsibility. Always try to work with a good doctor and/or medical professional and please consult him/her for your personal medical decisions. Please note that none of the information on this site has been evaluated by the FDA. It is shared for support and educational purposes only and is not intended to diagnose, treat, cure or prevent any disease or illness. Please do not make major changes in diet or exercise without discussing them with your physician and/or medical professional. Never begin taking any supplement without discussing it with your physician and/or medical professional, and never stop taking any prescription medications unless directed to do so by your physician and/or medical professional. The opinions expressed in this newsletter are those of the submitter and not of the newsletter volunteers or MEAction.
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