When a vaccine is found for COVID-19 and life begins to return to normal, what will you do when untethered from your home? Return to work, visit friends and family, go to the movies, travel? Those of us with #MyalgicEncephalomyelitis will remain sheltered in place. Not really a shelter but a cage, because little research and funding are allocated for treatments and a cure for ME. So many of us became ill with ME after a viral infection. COVID is a virus. What will be the long-term consequences for those who do recover from COVID but end up with long-term illnesses? Will they be part of the #MillionsMissing? “Coronavirus leading to more cases of ME will happen for sure, unfortunately,” said Dr. Alain Moreau of Université de Montréal, Montréal, Québec. “We need to be ready for the next wave.”
It is #MillionsMissing 2019. I would love to write about new jewelry I’ve created or exotic places I’ve traveled, but I am still severely disabled by Myalgic Encephalomyelitis (ME or ME/CFS). The absurdity of protesting from a prone position, because sitting up for long can have frightening consequences, is an evil necessity in order to advocate for reasonable NIH research funding. And with ME, every normal activity can have grievous ramifications. It is a horrifying realization that mental activity triggers the same devastation as physical activity. Going to the doctor can result in being bedbound for days. Perhaps reading a book, watching tv, a visit from a friend or family or even showering will put me in a darkened room, submerged in cascading and terrifying symptoms and wondering if I will recover. On better days, by the time I get up, showered and dressed, I often need to go back to bed again. Will I be lucky enough this time not to suffer severe PEM (Post Exertion Malaise)? It is a cruel and devastating game of craps, only not with dice but with my health, wherein each throw can result in overwhelming catastrophic symptoms which can become permanent. Those of us with ME walk a knife’s edge every day, trying to determine what we can and cannot do. Push yourself too hard and you can become housebound or bedbound, sometimes for the rest of your life.
There’s so much I want to do, travel with my husband, enjoy spending time with my family, revive my jewelry business, go out to lunch with friends, paint, read a book in one sitting like I used to do. It is soul destroying to have the drive to achieve your goals but live in a body that punishes you for the smallest exertion.
ME affects up to 2.5 million people of all ages and socioeconomic groups in the United States alone, with over 80% of them women. This disease causes profound neurological, immunological and metabolic dysfunction, resulting in a level of debility that is on average equivalent to congestive heart failure or multiple sclerosis. Yet the NIH funding for research remains abysmally low, approximately $5 per patient. A similarly disabling disease such as multiple sclerosis receives about $242 per patient per year.
Please help by bringing attention to ME and demand the NIH allot funding for research, clinical trials and medical education commiserate with the burden of this disease. Donate to #MEAction Solve ME/CFS or the Open Medicine Foundation, organizations which include people with ME who risk their own health to raise awareness and funding, along with researchers and clinicians to accelerate the discovery of effective treatments, and ultimately, a cure. You can help amplify our voices.
I am a senior with ME.
I am a retired teacher with ME.
I am a wife, parent, and grandmother with ME.
I am a friend with ME.
I am an artist with ME.
I miss you all.
I am still here.
I am one of the #MillionsMissing.
“[ME/CFS patients] feel effectively the same every day as an AIDS patient feels two months before death; the only difference is that the symptoms can go on for never-ending decades.” —Prof. Mark Loveless, Head of the AIDS and ME/CFS Clinic at Oregon Health Sciences University
Another year passes, and here I lay, on the couch or in bed, another one of the millions missing from participation in life due to myalgic encephalomyelitis. My family and friends must be tired of hearing about this relentless and insidious disease that robs me of my ability to have a normal life. But here’s the thing, I’m not alone. There are between 15 and 30 million people around the world with this disease. We have been mislabeled with the disparaging name “chronic fatigue syndrome,” denigrated by the medical community, and ignored by governments who allot shamefully minuscule funding, or none at all, for research.
M.E. is invisible. “You don’t look sick” is a common and dismissive refrain. It is severely under and misdiagnosed. Ronald Davis, PhD, Professor of Biochemistry and Genetics at Stanford University calls it “one of the last major diseases we know nothing about”.
M.E. is real. Imagine being so ill you can’t take a short walk, leave the house for weeks, talk on the phone, read, or have a visitor. When you do, you experience debilitating symptoms for days and weeks afterward. This is M.E.
I am one of the Millions Missing.
Can you see M.E.?
There are various things you can do to help. Sign this petition to Dr. Collins of the NIH and contact your congressional representatives to demand that the NIH grant appropriate levels of funding. A good place to start finding information would be MEAction.net. These are folks with ME who risk their own health to organise protests, start petitions, educate and inform politicians, the NIH, and more.
There are protests taking place this Saturday, May 12th, throughout the world. Find them here #MillionsMissing.
Follow the hashtag #MillionsMissing and #CanYouSeeMEnow? on social media to see what’s going on.
Be a part of the solution.
This is what my much-loved work area looked like not long ago. Crammed full of paints, gemstones, findings, half-finished bracelets and necklaces and a plethora of tools to create jewelry of all kinds.
Alas, I’ve come to grips with the reality that due to the severity of ME/CFS, it’s too difficult to make and market my jewelry; therefore, I’ve had to drastically cut back. If I am being honest, it’s something I will probably have to let go of completely. This is a tremendous loss as an avenue of creativity. With any chronic illness, you are forced to go through a continuous process of grief, for the unrelenting loss of one piece of your life after another. The contrast between what you were able to accomplish and the actuality of ones present circumstance is an ever widening chasm.
But, as one lovely young lady, Lucy Grove-Jones wrote in a wonderful post, It won’t be the same life I would have had if I’d never become sick, I know that….. because I will have a life. Just watch me.
In that same vein, I’ve begun, slowly retiring my jewelry accoutrements and replacing them with watercolors and brushes. Here in my studio is a required tool for ME/CFS, the ubiquitous couch where much of my life is spent, resting to alleviate symptoms and hopefully, prevent further damage. Books and iPad are piled high, always with hopes that my brain fog is less intense that day so I can delve into them for a small period of time. My art table awaits, for the moments I can again revel in my paints and explore all the gorgeous hues.
I have a life. It is a different kind of life, but it is mine to build anew.
Hi everyone! Just wanted to add a few recent pieces that I hadn’t displayed before. Have a wonderful day!
This is an antique French medallion. I love her delicate and exquisite face!
For those of you who are in the United States, Unrest will be coming to PBS on January 8th. This documentary is a glimpse inside one woman’s journey with Myalgic Encephalomyelitis (ME), a misunderstood, misdiagnosed, pervasive and insidious disease. It is a love story. It is a story of strength. It is a story of despair. It is a story about the failure of the medical system to take seriously millions of people who suffer from ME. It is a story of success, how one woman has managed to shine light into a little seen world. Unrest has been shortlisted as one of the top 15 documentaries for the Oscars.
Please take the time to watch this vital documentary and let others know about it. Perhaps if enough people begin to ask questions, we can increase awareness and funding for research. Perhaps those of us who are invisible to the general populace will become visible. Unrest is a story of an often bedridden and invisible community, built on the simple principle that, although you may not see us, we are still here.
Hear us. See us. Be part of the solution.
I am still here.
#millionsmissing @unrestfilm @jenbrea
It’s been over a year since we began to remodel our house in order to install an elevator. We ended up putting in a bonus room which I immediately co-opted to be my studio. I’ve created a few pieces recently; it’s just so much fun to play with tools and paints and make a complete mess! Here’s a few new items:
And here’s a photo of my new studio (okay, our room…. I can share 😇):
Today I bought an electric wheelchair and I’m overwhelmed.
How is it possible to feel so many contradictory things at the same time? I cried, laughed, cried some more. The joy I felt, being able to get outside and “go for a walk,” to take back some normalcy, the despair and sadness at the tangible evidence of the ravages of ME/CFS, all mixed up in an overwhelming emotional storm.
But still, freedom beckons!
I would love to be independent, to not have to be reliant on others all the time, but my walking has deteriorated and it is laborious to move my non-compliant muscles for very long. A short block had become a marathon. The parameters of my life are mostly bound by the walls of our house. But on days when getting dressed and going outside is an option, it’s a heady prospect indeed! So take that ME – A celebration is in order!
Why the hiking shoes you ask.
May 25th, 2016 is dedicated to the millions of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. #MillionsMissing and I am one.
#MillionsMissing is a day of global protest to raise awareness of ME/CFS and the impact it has on patients and their family. It’s about the millions missing from their schools and careers because of this illness. The millions missing from their families, friends and social lives. The millions missing from the lives they want to lead. The millions missing from research and development of effective treatments and cures, the doctors and health care professionals missing out on proper training to diagnose and help patients manage this illness.
May 25th, 2016 #MEAction is global day of action for ME/CFS patients, advocates, caregivers, and allies who will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving patients without relief. Protests are happening in: Washington, DC | London | Belfast | Atlanta | Boston | Dallas | Philadelphia | Raleigh | San Francisco | Seattle | Melbourne | Ottawa (virtual)
Most of us can only attend virtually.
So why a pair of hiking boots on my profile? I never got the chance to wear these down. It was I who was worn down. These shoes represent the healthy me. The me that I was before ME/CFS came in and ravaged my body. The me that I have lost to this illness. When I wore these shoes, I could push my body in exercise and it felt good even if it was hard. Then, hiking and yoga were physically beneficial rather than stressing my body to the point of dangerous consequences as it does now. I could tell my muscle to do something and it would obey me. I had a surety of foot that cannot exist with my present neuro-immune illness which affects every system and includes debilitating symptoms, like cognitive dysfunction, problems with short-term memory, concentration, clumsiness, disequilibrium, severe and constant pain. I miss that me that wore the hiking shoes with excitement, socialized with ease, read history and science books with pleasure while delving into beloved novels with joy, painted with abandon, listened to TED talks and understood. I miss what that body and mind could do.
The grief and fear when you start to lose physical and mental function never gets easier. Over and over, I’ve lost the freedom to create, take painting lessons, to be actively social, to get lost in movies and books, to mentally and physically engage. You never know what might become permanent. You adapt, becoming comfortable with a new normal — most people with disabilities do — but then the recovery/relapse cycle starts all over again.
Adding insult to injury, there always seems to be social pressure to spontaneously recover, or at least to stop behaving like an ill person. Compassion fatigue sets in, which is understandable but devastating. Lack of awareness around ME/CFS, and an outward appearance of health, can result in serious misconceptions about what our lives entail. The lack of community, empathy and acknowledgement of the real nature of this disease can be just as demoralizing as the symptoms.
Our lives would be infinitely better if this illness received the research funds to adequately perform quality biomedical research. Please sign the petition asking the NIH to fund research for ME/CFS: https://www.change.org/p/increase-funding-so-we-can-find-a-cure Please ask others to do the same.
Thank you all for reading this, your support and caring.
Studios in the Park in Paso Robles has redesigned Gallery 9 and moved it to the entry area of the studio. It is now the Upfront Gallery and is host to a multitude of unique designers and artists (yeah, I am there too!). If you are in Paso Robles, please visit and check out their latest exhibits!
And here is a taste of one of the fabulous exhibits always to be found at Studios