Thoughts on 20 Years of Illness

It was December 31, 1996 -- 20 years ago today -- that I fell suddenly ill with what was later diagnosed as myalgic encephalomyelitis. I've been sick for nearly half my life now. While I used to spend this day in sad reflection over time lost, I'm instead attempting to see it as a day to honor all that I, along with the millions of others suffering with this illness, have overcome. We have faced more than most people will in a lifetime: the loss of our health, careers, social life, independence, relationships, hobbies, ambitions, hopes, dreams and the ability to fully participate in all our many passions or even in the simple activities of daily living. We have withstood the doubts of others and the stigma of an illness poorly understood and marginalized for decades; one that has few answers and no accepted treatments to ease our many debilitating symptoms. We have suffered with bodies that don't function properly, and that sometimes reduce us to spending days (and for some, years) in darkened rooms where we can do little but focus on one breath as it follows another. And yet, we endure. We have learned, despite such pain, suffering and loss, to still find joy, love and the will to carry on. Without question, none of us would have ever chosen this path for ourselves. But it was the path given to us, and we each battle it with more dignity and strength than we probably ever realized we had within us. And that is certainly something to honor and commend. So, I choose this day, and everyday, to stand proud in all that each of us has overcome, and to continue to defy this illness with as much spirit, hope and grace as possible. Wishing everyone a brighter, healthier, hopeful 2017. May it be a year filled with promising research that finally provides clear answers, treatments and renewed hope for each and every one of us.

Originally posted on Facebook here.

New Research Brings Hope

For years, when asked what it's like to have severe myalgic encephalomyelitis (ME or ME/CFS), particularly during a setback or post-exertional crash, I would often tell people it feels like a near total body shutdown.  At its worst,  I can barely move or turn myself in bed, and can feel the energy it takes just to breathe.  It is an experience that is hard to put into words because it is so far beyond the normal, everyday conception of sickness.  And without knowing the details of exactly why these symptoms occur, it makes it all the more difficult for others (or even for those who experience it) to fully grasp and understand it.

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

Sources/Further reading:

• 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).

Spring in the Desert

Earlier this spring, thanks to a new ramp in the garage as well as a few other small accommodations, I was briefly able to sit outside in our driveway for the very first time.

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

Verdin Visitor

Cactus Wren

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.

Saguaro Cactus

Beehive or Hedgehog Cactus

Staghorn Cactus

Prickly Pear

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.

Sunset

Sunset

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

Cactus Wren

Juvenile Cooper's Hawk

Goldfinch

Gambel Quail

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

Millions Missing

In support of the #MillionsMissing campaign, below is a photo of a pair of my shoes in our driveway, representing the fact that I am one of the millions missing from society and from every day life as a result of myalgic encephalomyelitis (ME).

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.

‪In recognition of the millions of patients who, like me, are suffering without reprieve and are confined to our homes and beds as a result of ME, the advocacy group #MEAction has organized a community-based protest that will take place on May 25th at the Department of Health and Human Services (HHS) in Washington, DC as well as many other cities across the globe.  On this day, ME patients, advocates, caregivers and other allies will unite to protest the lack of government funding for research, clinical trials and medical/public education.  This lack of funding for research and education has left millions of patients without treatments or relief of their symptoms for decades, and has cost the U.S. economy an estimated $18-24 billion per year.

The goal of the #MillionsMissing campaign is "to give the 1 to 2.5 million disabled American ME/CFS patients their lives back, and to prevent even more children, teens, young adults and adults from joining the ranks of the millions who are already missing --- missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease."

The campaign is demanding the following:  

1. Increased Funding and Program Investments

Funding and program investments commensurate with the disease burden

2. Clinical Trials

Clinical trials to secure medical treatments for ME/CFS

3. Accurate Medical Education

Replacement of misinformation with accurate medical education and clinical guidelines

4. A Serious Commitment

HHS leadership, oversight and a serious commitment to urgently address ME/CFS

For the millions of patients who are too sick to attend the protest, there are several ways one can participate virtually: by submitting shoes to represent yourself at the protests, taking photos of your shoes by your doorstep or somewhere outdoors (to show you are missing from the outside world), participating on social media (use #MillionsMissing),  signing petitions or sending a Congressional Pack to your congressmen/women and state representatives before the protest.

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.

 

Wings of Hope

It's been quite awhile since I last updated my blog. This is in part because my health can make it difficult for me to write extensively or put my thoughts together into any kind of cohesive whole.  Mostly, though, I've held back on writing because I haven't had all that much to write about.  Being sick and bedridden for years on end simply doesn't inspire many riveting stories. :)

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

I don't know anything with certainty, but seeing the stars makes me dream.”
-- Vincent Van Gogh

I am hopeful that, with the help of the wheelchair ramp, I can continue these new little adventures of mine on a regular basis.  Perhaps, if I am well enough, I may even be able to lie outside in my front yard sometime this spring.  It would, I believe, be a little easier for me than our backyard patio, which has some obstacles to get through that can often cause a setback.  If this new set-up works out, my fingers are crossed that it may make it possible for me to lie outdoors more often, and without as much penalty.

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.

Purple Orchids

White Orchids

Yellow Daisies

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.

Dragonfly

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.