Saturday, December 31, 2016
Originally posted on Facebook here.
Friday, September 9, 2016
However, thanks to a new study out last week by the University of California's San Diego School of Medicine, we may finally be closer to an answer. And while their findings don't yet explain everything, they do potentially explain a lot. Indeed, it is quite remarkable when the very words you've used to describe what this illness feels like -- a near total body shutdown -- is revealed by science to be what may actually be happening on a cellular level.
Dr. Robert Naviaux's metabolomic study shows that cells of ME/CFS patients appear to be in what's called a hypometabolic (or dauer) state -- analogous to a kind of protective hibernation -- in response to an infection, toxin or other threat.
Dr. Naviaux explains:
"Despite the heterogeneity of CFS,* the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients. And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death.
In the case of CFS, when the CDR [cell danger response] gets stuck, or is unable to overcome a danger, a second step kicks in that involves a kind of siege metabolism that further diverts resources away from mitochondria and sequesters or jettisons key metabolites and cofactors to make them unavailable to an invading pathogen, or acts to sequester toxins to limit systemic exposure. This has the effect of further consolidating the hypometabolic state. "
Eighty percent of the diagnostic metabolites measured were decreased in ME/CFS patients, creating a type of metabolic signature that allowed for an accurate differentiation between patients and healthy controls. In fact, Naviaux's diagnostic accuracy rate, based on these results, exceeded ninety percent.
Dr. Naviaux goes on to say:
"CFS is an objective metabolic disorder that affects mitochondrial energy metabolism, immune function, GI function, the microbiome, the autonomic nervous system, neuroendocrine, and other brain functions. These 7 systems are all connected in a network that is in constant communication. While it is true that you cannot change one of these 7 systems without producing compensatory changes in the others, it is the language of chemistry and metabolism that interconnects them all."
While Naviaux's study will need to be replicated, other scientists are already finding similar results. For example, earlier this summer, an ME/CFS study out of Australia found irregularities in energy metabolism as well as amino acid, nucleotide, nitrogen, hormone and oxidative stress metabolism. They state that "the overwhelming body of evidence suggests an oxidative environment with the minimal utilization of mitochondria for efficient energy production."
More recently, in a webinar held by the Solve ME/CFS Initiative, Dr. Maureen Hanson of Cornell University mentioned similar metabolomic findings in a study that is currently awaiting publication.
Dr. Ron Davis of Stanford University and the Open Medicine Foundation is conducting the first comprehensive study ever done on severe ME/CFS patients, and has also already found similar disruptions in metobolomic pathways in his preliminary data, which he reported on at the Invest in ME 2016 Conference. Davis has a son, Whitney, who is severely afflicted with this disease. Whitney is completely bedridden and must be tube-fed. He is unable to speak or tolerate any kind of touch or interaction.
In Cort Johnson's excellent summary of Naviaux's study, he notes Dr. Ron Davis' observation that:
"In other diseases, the kind of disability seen in the most severely ill ME/CFS patients is a prelude to death. Once people get THAT sick they’re usually going to die; a process has been started that’s going to result in death. But that generally doesn’t happen in ME/CFS. People can remain functionally in what appears to be a near death state for a long time. That could suggest a way has been found to keep the body alive in a very low energy state."
Collectively, these findings could lead to a better understanding of what may turn out to be a central mechanism involved in this illness, and could also open the door to the first possible diagnostic test for ME/CFS.
Most importantly, this discovery may lead to new avenues for potential treatment in the near future. While it's unclear yet what that treatment may be, Naviaux appears optimistic. He states, "...metabolomics reveals a new window into the underlying biology of CFS that makes us very hopeful that effective treatments will be developed soon and tested in well-controlled clinical trials."
In simple terms, for millions of patients with ME/CFS who have been awaiting answers for far too long, this new study brings much needed hope.
|Photo by Getty Images|
- Full ME/CFS Metabolomics Study Publication
- Q and A Session with Dr. Naviaux
- From ME Action: Naviaux's Metabolomic Study is About as Big as You Think
- From Health Rising: The Core Problem in Chronic Fatigue Syndrome Identified? Naviaux's Metablomics Study Breaks Fresh Ground
*Patients in Naviaux's study met ME/CFS Canadian Consensus Criteria (in addition to IOM and Fukuda criteria).
Tuesday, May 31, 2016
Previously, the only way for me to get outside was through our backyard patio, which was difficult for me to access. It often led to such a substantial set-back that I could only attempt it about once a year. I am so grateful for this new set-up which allowed me to temporarily escape the confines of my room and briefly feel the sun on my face. While my tiny excursions were not as frequent as I'd hoped, I savored every single minute.
|My view outdoors|
|Gorgeous skies and mountain views|
|A Blooming Desert|
Spring is such a beautiful time of year here with all the trees and cacti in bloom. It's so lovely to see the many bright, delicate flowers emerging amidst the harshness of the desert. I look forward to seeing them every year.
|Beehive or Hedgehog Cactus|
|More Prickly Pear Blooms|
Every once in awhile, when I feel up to it, my parents also now wheel me to the large sliding glass door in their bedroom for a quick glimpse of the sunset. Arizona sunsets are truly breathtaking, with such deep, vibrant blends of orange, pink and yellow. Photos don't do them justice.
|Cool Sunset Sky|
I had a lot of health-related issues going on this spring as well, which required a few extra, unanticipated doctor appointments. While each appointment took place at home, the energy expenditure still led to some setbacks. Such is the frustrating nature of this illness. But, I am slowly recouping and have hope that I will bounce back to previous levels in time.
As I attempt to gain a bit of strength back, the birds and various wildlife continue to keep me company from my windows. Here are a few of my favorite visitors of the last couple months.
|Antelope Squirrel on the First Day of Spring|
|Juvenile Cooper's Hawk|
|Bunny Munching on Snack|
And finally, nature always offers up symbols of hope:
|Rainbow After a Storm|
|Wildflower Growing Through a Crack in the Pavement|
"Where flowers bloom, so does hope."
~Lady Bird Johnson
Tuesday, May 10, 2016
It's been 16 years since I have been able to enter the outside world in any capacity beyond doctor's appointments. I've lived in this house for well over a decade, yet have never once been able to step out through our front door or stand in our yard. In fact, it's been almost 10 years since I've been able to stand at all, or take even a single step outside of my bed or wheelchair.
The campaign is demanding the following:
- Increased Funding and Program Investments
- Clinical Trials
- Accurate Medical Education
- A Serious Commitment
Whether you are a patient, an advocate, a caregiver or a friend of someone with ME, please take a moment out of your day to participate in this important event in whatever way you can. Thank you.
Wednesday, February 10, 2016
However, occasionally, things do happen that differ from the norm. Indeed, I have had a few somewhat new (and even rather wonderful) experiences in recent months that I would love to share with you. While many of these are small, ordinary type of events that most people tend to take for granted, they are things that I don't normally get to enjoy. Thus, they hold much more significance for me.
One such new adventure resulted from a wheelchair ramp we recently placed in our garage. It has quite literally opened new doors for me and given me access to places that were previously out of reach. On days that I am well enough, I am now able to be wheeled outside for brief moments to look up at the gorgeous blue sky and see our beautiful view of the Rincon mountains in the distance.
|A new view|
Currently, I can't go beyond the garage door and venture further outdoors as I am unable to sit up for more than a few minutes and the bumpy gravel can be a difficult ride for me. But I am not about to complain. It's been a wonderful change of scenery. When you have been primarily confined to one or two rooms for over a decade, getting a glimpse of an alternate view for even a few minutes can feel quite liberating.
The ramp has also helped to fulfill another long-held wish of mine. One of the innumerable things I've missed in all these years of illness is the opportunity to gaze at the night sky. I can occasionally see the moon and a few stars twinkling from beyond my bedroom window, of course, but the view is always partially obstructed by the branches of my mesquite tree. And while I used to be a night owl prior to falling ill, my health often now forces me to end my day before the sun has even had a chance to set.
However, this winter, while the days are short and night descends over the desert a bit earlier than usual, my parents have more than once wheeled me outside to gaze up at a brilliant display of sparkling stars. It took my breath away to see all those glittering little diamonds scattered in the darkness. It is the first time I have been outside during evening hours in 15 years.
|Looking up at the stars|
Something else I have missed in all these years of confinement is the wide array of colors you see in the daily experience of simply being out in the world -- in gardens and art museums and in the simple variety and vibrancy of nature. In an effort to add some of those lively colors back into my life, my mom now makes sure that I always have flowering plants in my room to brighten my days. I love watching them burst into form, all radiant and iridescent, as if in celebration of their own beauty.
In addition to these daisies and orchids, a dear friend of mine sends me a new amaryllis plant each year for the holidays. I have several whose bulbs are just now beginning to sprout, and I look forward to getting to see their beautiful display of blossoms in the coming weeks.
This Christmas, I was also given a few of those adult-geared coloring books that are so popular right now. As long as I am careful to pace myself and not overdo, I find they can be a fun way to pass the time when able. Here's a dragonfly I finished a few weeks ago that I thought came out decently, at least compared to some of the others I did. :) I clearly don't have much artistic talent, but it's nice to feel I am doing something even slightly creative. It's another way for me to add some color to my world.
As always, the birds and wildlife also bring me a little beauty each day. While this doesn't technically count in my list of "new experiences," it wouldn't be a proper update without including a few of my favorite photos of my more recent window visitors -- from the usual finches, woodpeckers and doves to the slightly less common black-chinned hummingbird and Cooper's hawk.
|Bird Visitors (click to enlarge)|
Another recent treat was getting to have my annual (always far too brief) visit with my best friend and her two daughters over the holidays. Due to my health, any interaction I have must regretfully be kept to a minimum (generally less than 10 minutes or so) in order to avoid a lengthy setback. However, thanks to very careful pacing, this was one of the first years in quite some time that I wasn't crashed prior to the visit, and it was nice to be able to interact even just a tiny bit more than usual. I especially loved getting those precious hugs from her sweet children. Her youngest, my goddaughter, always comes back into my room for an extra hug before they leave, which never fails to make me smile.
And now for my most exciting news of all!
I've mentioned previously that, unfortunately, my fiance also suffers with severe ME. Jim's been sick for over 30 years and is wheelchair and mostly housebound. Due to our health, our relationship has been forced to remain long-distance. Until this past January, it had actually been eight years since we'd been able to see each other. However, by some small miracle (and with much help from both our families), Jim was recently able to find a way past the many obstacles to fly out and visit with me! I still can't quite believe it really happened.
|Together again at last!|
|Always so sweet, Jim brought me a rose and some chocolates|
In order to help pull this off, one of Jim's brothers kindly offered to fly out from CA to PA and join Jim in his flight here to Arizona (and then back again for the return flight home). This assured that someone would be there to help Jim through every step of the journey in case he needed additional assistance or encountered unexpected issues. Jim also flew first-class (and had a reclining wheelchair) so that he could lie mostly flat for the entirety of the flight. My parents, of course, were also extremely accommodating and went out of their way in order to make the visit as easy and comfortable for both of us as possible. In addition, Jim's parents helped tremendously by caring for him before and after the trip.
I am beyond grateful to all who so graciously offered their assistance and support to make our visit happen. I'm most especially thankful for Jim, who bravely fought through so many hurdles and risked his very health for us to be together. I don't have the words to describe how remarkable it was to be able to see him again after so many years apart. Despite how sick we both were, every moment we got to spend with each other was pure joy.
Of course, I miss him terribly now that he's back home, but I feel so fortunate to have such wonderful, new memories to hold on to and cherish.
My time with Jim gave me a newfound sense of hope. Admittedly, there was a part of me that wondered -- without a cure or a new potential treatment -- if I would ever see him again. Our health has been so poor over these last many years, and research for this disease continues to be sparse and lacking in much immediate promise. However, Jim's visit was a reminder to me that, even in the midst of unending struggle, dreams can and do still come true. Undoubtedly, while my body remains confined by illness, my heart, mind and soul can still find ways to soar.
It is on those wings of renewed hope that I forge ahead with even greater resoluteness, knowing that, despite everything, many more moments of joy, love, beauty and wonder await me.
Tuesday, June 23, 2015
I recently listened to the audio version of Elisabeth Tova Bailey's The Sound of a Wild Snail Eating -- a beautiful, poignant and reflective book about surviving a debilitating illness while finding beauty and wonder in an object of nature and in quiet observation.
Bailey was an active 34-year-old woman when she was struck down with a mysterious, flu-like illness from which she never fully recovered. Suddenly bedridden and isolated from the outside world, she found solace in a rather unexpected companion: a wild snail in a pot of violets given to her by a friend. The snail was moved to a terrarium filled with woodland plants, and as Bailey began to observe, research and care for this enigmatic creature, she found parallels to her own life. She writes:
“..the snail had emerged from its shell into the alien territory of my room, with no clue as to where it was or how it had arrived; the lack of vegetation and the desert-like surroundings must have seemed strange. The snail and I were both living in altered landscapes not of our choosing; I figured we shared a sense of loss and displacement."The snail became a source of wonder and fascination to Bailey, and as her illness forced her deeper into a secluded confinement, she found comfort in this unusual bedside companion.
“Illness isolates; the isolated become invisible; the invisible become forgotten. But the snail... the snail kept my spirit from evaporating.There was so much about Bailey's story and writing that, for obvious reasons, deeply resonated with me. I saw myself in the descriptions of the onset of her sudden illness, the isolation that the severity of her affliction thrust upon her, and the sense of peace she found in observing an object of nature. For Bailey, it was a snail; for me, it is the trees, the wildlife and the cactus blooms that comfort me outside my bedroom window each day.
...Watching it glide along was a welcome distraction and provided a sort of meditation; my often frantic and frustrated thoughts would gradually settle down to match its calm, smooth pace. “
Something else that struck a particular chord with me was Bailey's notation of her glaring absence from the world she once knew. She writes, "From the severe onset of my illness and through its innumerable relapses, my place in the world has been documented more by my absence than by my presence."
This sense of absence is something I've grown more acutely aware of in recent years. I've always been conscious of it on some level, of course, but it seems to stand out to me more and more as the years pass and I watch time and the lives of others slip by without my presence.
The degree of isolation that is brought upon those who suffer with this disease, especially in its severest form, is at times rather shocking. These patients are isolated not only from the outside world, but often also within the confines of their own home. Some must live in total darkness and silence virtually 24 hours a day, unable to tolerate even the slightest hint of light or sound. As a result, they are also unable to fully interact with the very people who live with and provide them with care.
In my own case, I currently reside with my parents; yet, I rarely see them for more than about an hour scattered in small moments throughout each day. Due to severe difficulties with speaking above a whisper, as well as the problems I face with sensory overload, I find that more than a few minutes of interaction can be incredibly taxing. I struggle with the influx of information (both visual and auditory), keeping my eyes focused on whoever is speaking, quickly finding the right words to say in response, and then getting those few words out clearly enough to be heard. Sometimes, if my reply is more than I can say out loud, I have to write it down on a piece of paper instead. Thus, even minimal interaction can be deeply draining and, if it goes on too long, has the potential of causing a setback that can last for weeks or even months.
It's difficult to see how much my parents (my mother, in particular) must do for me on a regular basis, and yet, I cannot really give them anything in return. They are each in their mid-70s now, and I worry about the fact that, were they to become ill themselves, I could not be there for them in any kind of real, tangible way. It's something I do not let myself think about often. For now, I'm ever grateful they are each still in my life, and that they are both healthy and strong.
Of course, my limits in interaction are not discriminatory; they apply to anyone who comes into my room. When my brother and his family visit for a week each spring, I barely get to see them beyond giving everyone a hug each morning, exchanging a few words about what they've been up to, telling them that I love them, and perhaps taking a few pictures of us all together on their last day. While I cherish each and every one of these moments, I long to participate as they go on their daily sight-seeing adventures, or simply to hang out with my niece and nephew in my bed and play games or listen to all of their many stories. Sometimes, instead, I will listen to them from afar, my eyes closed, as they play or chat in another room.
Friends, too, have inevitably been distanced as a result of my illness. In fact, it's been 14 years since I've seen virtually anyone outside of family, helpers and a few doctors. The only real exception is my best friend from college. We studied a semester abroad together, backpacked through Europe and spent two months after college traveling throughout the U.S. She is like a sister to me and, prior to my becoming ill, we used to speak on an almost daily basis. Now I see her for a few minutes once a year when she comes to AZ with her family for Christmas. She and her children give me hugs and gifts, tell me of their latest news and, sometimes, her daughters will sing a song or two for me. Her husband often simply greets and waves to me from the hallway. Regretfully, that's the extent of her visit each year, as it is the most that my health can withstand.
My own fiance and I have not seen each other since his proposal in 2008, as we are both now far too sick to travel such distances (Jim lives about 2,000 miles away). We still write every single day, often several times a day, and not a moment goes by where I don't feel infinitely grateful for his presence in my life. But I miss him terribly and wish so much that I could see him again.
As someone who used to be highly social and active prior to getting ill, these challenges in communicating with and being present to those I love are unbelievably frustrating and, at times, heartbreaking to me. There's been an immeasurable amount of lost time, and of irretrievable moments never fully experienced. I've missed out on countless milestone birthdays, weddings, anniversaries, holidays, parties, recitals, plays, concerts and even just the daily everyday type of things like casual dinners, going to the movies and chatting for hours on the phone. As much as we all work around my circumstances as best we can, I'm simply not able to be an active participant in the lives of my friends and family in the way that I so yearn.
Fortunately, the rise of social media in recent years has helped a bit in reestablishing my connection to the outside world. Facebook, for example, has allowed me to reunite with many friends I had not seen or spoken to in years. Though I am unable to spend much time online, I can generally check my newsfeed for a few moments each morning, where I get to see lots of photos of all the many faces I miss, and hear about everyone's daily activities and adventures -- without having to write long emails, which can also be quite difficult for me.
In addition, I've been able to meet new people I'd otherwise never have met, and some of these new friends have become very dear to me over the years. It's been wonderful to have this outlet, and I am so grateful to now have that kind of connection.
At the same time, seeing and hearing about everyone's exciting lives on a day-to-day basis can also be a stark reminder of just how much I am missing out on, and of how absent I really am from each of my many friends' lives.
Despite my circumstances, however, I cannot truly say that I am lonely. Distanced as I may be, I still have the love and support of dear friends and family, some of whom do their utmost to care for and include me in their lives on a regular basis. My absence is felt on their end as well as on mine, and I am reminded often that I have not been forgotten.
Most especially, I have the love and support of my fiance who, every day, affirms how important I am in his life, as he is in mine. It is that love which holds me up and carries me through.
I also know that, unfortunately, there are many others like me out there, fighting this disease in their own forced isolation every single day, and we are each united in our shared stories.
Finally, much like Elisabeth Tova Bailey's wild snail, I have the wildlife, blooms and butterflies outside my window. They remind me that there is a kind of beauty and simplicity in merely existing and being open to each moment.
And, in this moment, my presence in this world -- though slowed, distant and contrary to my wishes -- has not been fully silenced. It makes itself known through the words I write, through small gestures, through memories and through the hearts of the people I love. In this way, it battles on and continues forward. And it will never cease striving for its long-awaited moment of release.
Meanwhile, from my window, a little bit of grace:
|Female Lesser Goldfinch|
|Male House Finch|
|Female House Finch at Sunset|
|Female House Finch|
|Antelope Squirrel Waves Hello for a Picture|
|Desert Cardinal (Pyrrhuloxia)|
|Mourning Doves in Love|
|Mourning Doves Kiss|
|Gila Woodpecker and Saguaro Cactus Blooms|
|Bee and Saguaro Cactus Bloom|
|Bee and Saguaro Cactus Bloom|
|Staghorn Cactus Buds|
|Prickly Pear Cactus Blooms|
|Amaryllis after Rain|
― Elisabeth Tova Bailey, The Sound of A Wild Snail Eating
― Eckhart Tolle