Dreams at Stake

In the Meantime...

2012-04-04T06:28:00.001-07:00

There has been much I would have liked to have written about in the last many months, but my health has just been too poor. I hope to be well enough to start writing again sometime in the near future. In the meantime, I thought I'd share a a few more photos from my little bedroom window.

Within the confines of these four walls, my life is at a standstill. Outside, life goes on -- vibrant, beautiful, active and free. It is where I so desperately long to be.

Amaryllis Blooms

Amaryllis

Cute Bunnies

Deer at Christmas-time

More Deer

Cute Gopher Strikes a Pose

Pretty Goldfinch

Lots of Finches

Quail

Black Flycatcher

Falcon

Finches Waiting out the Rain

Through the Clouds... A Rainbow

So shines the setting sun on adverse skies,

and paints a rainbow on the storm. ~Isaac Watts

Wishing everyone better health, fewer storms and brighter skies ahead.

In Memory of Emily

2012-03-22T06:20:00.016-07:00

It is with much sadness that I write of the passing of Emily Collingridge -- a brave young woman with severe ME who died on Sunday from complications of the disease. She was 30 years old.

Emily, who had been sick with ME/CFS since she was six years old (and was mostly bedridden since her teens), still managed to accomplish much in her short life. She authored the book Severe ME/CFS: A Guide to Living. She also worked as a volunteer advocate for the Association for Young People with ME (AYME) as well as a family support charity called Home-Start. She manage to do all of these things from her bed, but was unable to continue when she suffered a setback in 2005.

Emily graciously allowed me to include her story and photos in my October 2011 testimony to the (ME)/CFS Advisory Committee. In my testimony, I borrowed from Emily's own appeal to tell her story:

[Emily] writes: "I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison."

Emily's daily life involves medicine/fluid being pumped into her stomach through a tube, various injections, diaper changes, transient paralysis, and pain so severe she sometimes hallucinates.

[She states]: "This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change."

Although Emily and I only corresponded a few times in the last many months, it was enough for me to have considered her a friend. In the brief time that I knew her, I found myself repeatedly touched by her kind nature, and her strong desire to help others -- even when she herself was so terribly ill. Most of all, I was inspired by her strength, spirit and determination -- all of which she continued to demonstrate to the very end.

Today, I feel both saddened and angered. Emily was so young when she fell ill, and so young when she died. She had such potential; such vitality and desire for life. She should not have suffered as she did. She should not have died. There should be answers by now for those of us suffering with this disease. Instead, we are repeatedly told by government health agencies that there is not enough money to increase funding for research, that things take time, and we need to be patient and wait. But some of us have waited an entire lifetime. And for some, like Emily, it is already too late.

I hope that Emily's death will not be in vain. I hope that, in hearing her story, people will start to understand just how devastating this illness truly is, how dreadfully sick we are, and how desperately we need help.

My heartfelt sympathy to Emily's family and friends. She will be missed by so many.

For more about Emily, please check out the following links:

These Small Candles

2011-11-26T06:41:00.000-08:00

One thing I think this illness has taught me over the years is the need to maintain a constant sense of perspective.

I can recall healthier days many years ago when I sometimes complained about various inconveniences I now see as luxuries: long lines at the grocery store, traffic, the high cost of a movie ticket or night out with friends, the tediousness of housecleaning, an especially difficult day at work.

And yet, as I reflect back on those things, I actually long to find myself in some of those same circumstances, which I now view as great privileges.

Today, I would pay any price for the blessing of being well enough to go to a grocery store and pick out my own food, and would happily stand in line for hours in order to do so. I would be equally thrilled to pay any amount if it allowed me even one night of health to spend out (or even in) with my family and friends. And I would never complain about a long or hard day at work because I'd be so overjoyed to even be ABLE to work that I would be there half an hour early every single day.

When I first became ill, I thought I'd lost so much. And I had. But despite how difficult my life had become as a result of my health, I was still able (with extreme determination) to continue to work. I was still occasionally able to go to lunch or to a movie with a friend. Though it was difficult, I could do my own laundry, get my own groceries, cook my own meals. I didn't realize how extremely fortunate I still was.

And then, I had a life-changing setback which left me housebound. Suddenly, I found myself once again longing for my old life. Not just the life I had before I got sick, but the life I had just prior to the setback. If only I could get back to my previous level, I thought, I'd never take anything for granted again.

And then... another setback struck, this one leaving me bedridden. Then another, leaving me unable to speak above a whisper. Then another, leaving me unable to shower. And so on.

Each time I have a setback, I find myself yearning for what I had before it -- for what gifts I did not fully appreciate as much as I should have, and for things I never even imagined I could lose or would have to go without.

This illness can take away so much from our lives: our independence, our careers, our hobbies and our sense of identity. In extreme cases like mine, it can even take away basic, elemental abilities we don't expect to lose until we are nearing the end of our lives.

As I've mentioned previously, in order to cope with this degree of loss, I've had to learn to shift my thinking; to try to focus on what things I can do on any given day, and not on what I can't. This is often easier said then done.

Struggling with these challenges, I recently found myself searching for quotes on hope. I came across the following:

"In moments of discouragement, defeat, or even despair, there are always certain things to cling to. Little things usually: remembered laughter, the face of a sleeping child, a tree in the wind -- in fact, any reminder of something deeply felt or dearly loved.

No man is so poor as not to have many of these small candles. When they are lighted, darkness goes away and a touch of wonder remains."

-- "These Small Candles" (attributed to a tombstone inscription in Britain)

It reminded me to take a moment and reflect on what small (and even large) candles still remain in my life. Here are just a few:

Friends and Family

Sweet Notes from my Fiance

Hearing those 3 words....

Flowers to Brighten My Day

Hot Cups of Tea

The Rare Chocolate Indulgence

Comfort Foods

Sweet, Healthy Fruit


Audiobooks (and getting lost in a good story)

Bird Song

Window Views, Blue Skies and Puffy Clouds

Soft Breezes

Beautiful Music That Carries Me Away

Photos of my Niece and Nephew

Little Kid Drawings (made just for me)


Childhood Memories (that's me climbing our maple tree)

Humor and Things That Make Me Smile

Memories of Past Travels
(This is a photo I took while in Venice, Italy)

Hope for the Future


Dreams -- For it is in dreams that I am almost always healthy. It is there where I can still walk, talk, run, dance, travel and even fly.

What are some of your small candles?

Any photos not my own are courtesy of weheartit.com or gettyimages.com
_____________________________________________________________

Note: I will be offline more than usual in the coming months. Wishing everyone a wonderful holiday season!

Testimony: A Glimpse into Severe ME/CFS

2011-10-19T06:55:00.001-07:00

The upcoming CFS Advisory Committee (CFSAC) meeting will be held in Washington on November 8th and 9th. For those who may not be aware, the CFSAC exists to provide recommendations to the Secretary of Health on what directions to take in terms of research, science, care and broader health issues related to ME/CFS.

I had hoped to make another video testimony for presentation at this meeting; however, my health simply did not allow for it at this time. My testimony was therefore submitted in writing. You can find it below.

My goal was to show the faces and tell the stories of some of the more severely ill -- stories about this disease that are not often told. I wanted to do this not to evoke sympathy, but to create awareness and incite action.

Regretfully, I was told the testimony would not be accepted with the inclusion of photographs. I therefore had to resubmit it, excluding the pictures of the patients. However, I am posting my testimony here as it was originally submitted (including the photos) because I think it's so important for people to see our faces.

Much thanks to all those who granted me permission to share their stories and photographs. I am in awe of their strength and spirit.

~~~

Dear ME/CFS Advisory Committee,

Myalgic Encephalomyelitis (ME), often inappropriately referred to as chronic fatigue syndrome (CFS) in the U.S., is a serious and debilitating neuro-immune disease. While cases vary from mild to severe, studies have shown that many patients experience a level of disability equal to that of heart failure or late-stage AIDS.

It has been estimated that 25% of ME/CFS patients are fully disabled --often housebound or bedridden for years on end.

Yet, not many know the full spectrum of the illness because much of the suffering occurs behind closed doors. Patients are often too sick to tell their story. Some are living in darkness, some in silence and some in both. Some have not been able to leave their bed in years. Some struggle to eat, drink, speak and even breathe.

The following are just a few of those patients' stories.

~~~

My name is Laurel. I was 24 years old when I came down with ME/CFS following an infection with mononucleosis. I was active, ambitious, successful and well-educated. I loved travel, adventure and spending time with friends and family.

I never expected, at the prime of my life, to spend over a decade bedridden -- stricken with a horrible disease that has a trivial name and no effective treatments.

I am unable to stand, walk, speak above a whisper or fully bathe and care for myself. I have lost 15 years of my young adult life -- 15 years which can never be retrieved.

~~~

My fiance, Jim, was a former athlete in high school and college who earned a PhD from Carnegie Mellon.

Jim fell suddenly ill at age 19 after developing mononucleosis. He's been sick for almost three decades - more than half his life.

His dreams and ambitions cut short, he's been housebound and unable to work for years. He requires a wheelchair because he can no longer walk. He longs for the day he can run again.

~~~

Nina was struck down with ME/CFS at age 27 following a flu-like illness.

A young woman with many hopes and dreams, her life was suddenly turned upside down. She used to love to dance. Now she is unable to leave her bed and needs constant care.

At one point, Nina became so sick that she was struggling to eat, drink, talk and even breathe. She has been hospitalized several times. Her biggest wish is to be strong enough to sit in a wheelchair again, if only for a couple of minutes.

~~~


Alexis before ME/CFS

Alexis -- an ambitious, successful and energetic young woman -- also fell suddenly ill in her late 20s. She has been sick and housebound for many years now. As a result, Alexis' hopes for her future have all been forced on hold.

Alexis recently suffered a severe setback, rendering her essentially deaf and blind due to the neurological problems imposed on her by severe ME/CFS. She must now live in darkness and silence 24 hours a day/7 days a week.

Her family currently communicates with her using Tactile Fingerspelling – a form of sign language for the deaf and blind. She cannot even tolerate the sound of whispers.

~~~

Ben was a healthy, active 18 year-old when he became suddenly ill following an infection with mononucleosis, which later led to a diagnosis of ME/CFS.

Now 23, Ben is essentially completely bedridden. On a good day, he can take a few steps with a cane. At 6'2 he weighs just 118 pounds. He needs others to wash his hair and cut his food.

Ben spends every day in bed as his friends and peers move on with their lives, doing and experiencing all the things he longs to do but no longer can.

~~~

Marian was a former registered nurse (RN, MSN). She created a company called TrakMed, which provided trackside medical care for many auto racing teams. She partnered with General Motors Racing, providing innovative care for their drivers and teams.

Marian became suddenly ill in her 40s following a flu-like illness. She has been ill with ME/CFS for 10 years and is currently housebound and mostly bedridden. She often has trouble sitting up in bed, and she requires supplemental oxygen to breathe. Her sister, who also suffered from the illness, died of heart failure as a result of ME/CFS at age 49. Marian sometimes worries that she may meet the same fate.

~~~

Emily became ill with ME/CFS when she was just 6 years old. She's now 30. She's been sick for 24 years --almost her entire life.

She writes:"I cannot be washed, cannot raise my head, cannot have company, cannot be lifted from bed, cannot look out of the window, cannot be touched, cannot watch television or listen to music - the list is long. ME has made my body an agonising prison."

Emily's daily life involves medicine/fluid being pumped into her stomach through a tube, various injections, diaper changes, transient paralysis, and pain so severe she sometimes hallucinates.

"This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change."

~~~

Please listen carefully to the testimonies being presented today. Please see our faces, hear our stories and understand our desperate plight. Some of us are quite literally fighting for our lives.

In return, we are not asking for much.

We are simply asking for the basics of what should be expected with any illness:

a clear and accurate definition,
an appropriate name that doesn't belittle the disease,
adequate funding for serious biophysical research,
clinical trials of medications in search of treatments and a cure,
and increased awareness/education about the true nature of this horrible disease.

That's all. It's what is done for every other illness of equal severity. It's even what is done for illnesses of lesser severity. Why has it not been done for ME/CFS?

We've been waiting 30 years for the government to take action. We cannot wait any longer.

Thank you.

Note: Due to my health, it took me over three months to complete this testimony. All photos and stories are presented with permission.
_________________________________

To read this testimony translated into German (thanks to Nina!), click here.
To read this testimony translated into Dutch (thanks to Zuiderzon!) click here.

March 2012 Update: Tragically, Emily, one of the young women mentioned in this testimony, passed away on March 18, 2012 due to complications from severe ME.

New Reasons to Hope

2011-09-08T08:43:00.000-07:00

Earlier this week, it was announced that the Whittemore Peterson Institute (WPI) won $100,000 in the Vivint Gives Back Project. This was very exciting news both for the WPI and the patient community. You can watch the video and hear Annette Whittemore's moving speech below. Thank you to all who voted to help make their win possible! And, of course, thanks to Vivint for such extraordinary generosity.

In other recent news from this summer, a group of highly respected specialists and researchers from around the globe have published a paper in the Journal of Internal Medicine entitled Myalgic encephalomyelitis: International Consensus Criteria. In the paper, the authors note that the original medical term for this illness is myalgic encephalomyelitis (ME), and suggest it is time to cease use of the inappropriate term 'chronic fatigue syndrome.'

The label 'chronic fatigue syndrome' (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term 'myalgic encephalomyelitis' (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization's International Classification of Diseases (ICD G93.3).

The paper goes on to describe ME as "an acquired neurological disease with complex global dysfunctions, pathological dysregulation of the nervous, immune and endocrine systems, with impaired cellular energy metabolism and ion transport."

The authors state that the primary goal of their report is to establish a more selective set of clinical criteria that will enable patients with ME to be diagnosed and enrolled in research studies using a case definition that is acceptable to physicians and researchers around the world.

You can find a summary of the ME International Consensus Criteria here.

What does this all mean? For many of us in the patient community, it means a lot. It means hope.

Recognition and Reflection

2011-08-21T06:21:00.000-07:00

The below journal entry was written in 2001 sometime after becoming mostly bedbound and unable to speak above a whisper. I had lost so much, and had no real means by which to communicate that loss. I was still living in my small apartment then, and at the time, could shower and heat up food on my own. However, doing so took every single tiny morsel of energy I had and rendered me otherwise bedridden. I had no real computer access, as I could not read or sit up at the computer long enough to write mail (I did not have a laptop or portable email device yet). I couldn't talk on the phone or carry a conversation. I had not yet met my fiance. While my friends and family did what they could, geography and my own limitations in communication often left them at a distance. I was essentially alone. It was then that I started to keep a journal.

Journal writing had its own difficulties, however, as I could only hand write a few sentences at a time. Typing with one's eyes closed is one thing, attempting to write by hand with your eyes even partially closed is another. In fact, writing proved so difficult that some of my old journal entries are completely illegible.

I thought I'd share one of my first (and more decipherable) entries with you today, as it expresses some of the loss, isolation and self-reflection that severe, chronic illness so often imposes on us. It also speaks to the undying, inner spirit within, and of the deep desire to have a witness to our experiences.

~~~~~~~~~~~~

June 2001

On most days, being virtually bedridden, I often lay for hours with nothing to keep my company but my own thoughts. I have an incredible need, at times, to make sure I get these thoughts on paper. Not because I feel they are noteworthy insights at all -- in fact, usually they are fairly simple observations. It is more that getting my thoughts on paper seems to legitimate my existence somehow. It makes me feel that my time here locked up in my bedroom for months on end is not entirely wasted, and that, someday when I am well, I will be able to look back and see what was going through my mind while I spent week after week in solitary confinement. Perhaps someday I will read this journal, written in the darkest time of my life, and remember never to take anything for granted again. Perhaps, too, it will serve as a reminder that, even in the worst of times, hope can still endure and there is always something for which to be grateful.

I think, of course, that I also need some form of communication... some way to tell my story, to explain my experience, and to process it all so as to better understand myself and what is happening to me. Having virtually no contact with the outside world, this journal is now my only real outlet.

Cut off from others, I also feel that others are cut off from me. No one knows my daily thoughts, my current hopes and dreams, my joys and sorrows of each day. No one knows the enormous amount of strength and determination it takes for me to get through each moment of this illness. Thus, in this way, I feel twice made invisible, not just by the decline of the body itself, but by the subsequent inability to express myself.

In What Her Body Thought: A Journey Into the Shadows, ME/CFS survivor Susan Griffin describes this need for expression well when she says:

The hope is not just for the healing of the body, but for an emphatic understanding. To be seen. To be known. ...Shaken, left without any way to articulate the nightmare, and therefore isolated not only by bodily trauma, but by its incommunicability, I have felt an overriding desire for recognition.

In my case, I think I'm searching for recognition not just from others, but from myself as well. I think it is impossible to suffer a serious illness without seeking deeper meaning and trying to understand who you truly are, and why you are here.

Despite the multitude of limitations this illness has thrust upon me, I do feel the core of me still remains. Having been stripped of almost all attachments and all the things I once thought defined me, I am often struck by that indestructible sense of "being-ness" inside me that I still recognize as myself. In fact, I see it with more clarity than I ever did before. In losing the healthy body I had always depended upon, the center within me seems to want to emerge more profoundly than ever before. I have such respect for that part of myself, and that part in all others as well, that shines from within.

I am reminded of a short story I read in college called Pale Horse, Pale Rider by Katherine Anne Porter. The story, set at the time of the 1918 flu epidemic, is a semi- autobiographical account of the author's own experience with illness and that precarious edge between life and death. As the main character, Miranda, falls deeper and deeper into sickness, Porter writes:

....There remained of her only a minute fiercely burning particle of being that knew itself alone, that relied upon nothing beyond itself for its strength; not susceptible to any appeal or inducement, being itself composed entirely of one single motive, the stubborn will to live. This fiery motionless particle set itself unaided to resist destruction, to survive and to be in its own madness of being, motiveless and planless beyond that one essential end. "Trust me," the hard unwinking angry point of light said. "Trust me. I stay."

What that inner light, that will, or that undying and untouchable sense of "me-ness" actually is, I don't know. But I silently thank God every single day for its presence.

I have so many more thoughts I'd like to express right now, but so little energy to say it. And yet, such is how it is. I have no choice but to do what I can with what I have. It's all anyone can do.

______________________________________________________________________

Edited August 2011

Recognition and Reflection was originally published in Life Skills Magazine, 5th edition (June 2010). It is being reposted here with permission of LSM. If you would like to receive a free copy of Life Skills Magazine, you can sign up here. Please also check out Discovering Purpose, a blog about creating a purpose-driven life.

Small Moments of Grace

2011-07-02T05:56:00.000-07:00

Not much happens in my world. The days come and go, the sun rises and then falls again, the seasons repeatedly turn and the traffic outside my window zooms by. As I remain here, sick and essentially motionless, I watch as everyone else hurries to work, to dinner, to a friend's house, or to some event or adventure I cannot partake in.

I long to re-enter the world of the living; to wake up one morning free from all bodily constraints, able to jump away from this bed and the disease which has taken so much from me.

In the meantime, I continue to try to remind myself that my life, with all its physical pain, sickness and struggle, is not without its own quiet moments of activity, beauty and purpose.

A couple years ago, a friend of mine from back east (who also happens to be a former boss, and one of the sweetest people you could ever know) sent me an amaryllis plant for Christmas. I watched in wonderment as it slowly transformed from a tiny bulb to six individual, colorful blossoms.

This spring the plant bloomed for a second time, going from this:

to this:

It's an interesting thing, watching a flowering plant bloom. There's a serenity to it; a sense of wisdom, elegance and quiet patience. I could do well to learn to possess such virtues.

Ironically, I've never been one who was good at resting, nor at being still. Even confined to this bed, I want always to be doing, to be accomplishing something, to know I am somehow still making a difference in the world. I struggle to just be. I appreciate nature's silent and gentle reminders that sometimes there can be beauty in merely being present to what is; to existing, breathing and hoping.

As I struggle with my forced solitude, I am happy to have a new bunny living outside my window, keeping me company. I seem to have a new rabbit living in the front yard with the arrival of every new spring and summer season. So far this particular bunny has been rather quiet, preferring only to be seen in the early morning hours or just before sunset.

Fortunately, the bunny apparently found a safe hiding spot on the day this guy showed up in hopes of a tasty breakfast.

I couldn't get a good shot (as in photo) of him as he moved so quickly, and it was still a bit dark outside. Though he probably would have had little interest in me, I was still glad there was a wall to safely separate us. :)

One morning I had the privilege of seeing this beautiful deer strolling the yard. She took my breath away.

I've had my share of the usual window nature sightings as well: a variety of squirrels, gophers, lizards, birds, birds and more birds. Here are a few of said creatures:

I'm told this is an antelope squirrel (not a chipmunk),
but I'm not convinced

Gopher

Gecko (not to be confused with Geico)

Finch and Cardinal Hang Out

Pretty Goldfinch

Hummingbird

Falcon

I mentioned in a previous post that, on "good days," my parents sometimes wheel me to their bedroom where I get to have a much nicer view of the mountains, sky and landscape. While those jail breaks have been less frequent than I would prefer, I am grateful for every one of them. It is on those days that I get to see views like this:

The view is even more beautiful in spring and summer when the trees are all in bloom. This photo was taken in winter, and that white stuff you see on top of the mountains (look real close) is snow!

Earlier this spring, my brother, sister-in-law, niece and nephew came to visit, and I got to see them for the first time in two years. Visits are always hard on me, and it broke my heart that I could only spend a few short minutes with them each morning. However, I was so grateful even for that time, as it was such a joy to see their smiling faces every day.

My niece and nephew had grown so much, and I absolutely adore them both. I wanted so much to play with them, to go on adventures with them, to interact and talk and catch up and just get to really know them. I wanted to tell them what a fantastic and super cool aunt I would be if my circumstances were just a little bit different. But, my circumstances ar what they are, and we all made the best of it. I hope I was somehow able to convey how much they mean to me through my silent expressions of joy upon seeing them, and my little whispers and words of affection.

Here's a small collage of photos showing some of their various adventures while they were visiting (all photos courtesy of my brother):

While I was unable to participate, I loved hearing the stories and knowing they were having a good time.

In the last few months, I also became a godmother twice-over. I am already the proud godmother to my nephew, and I am now also godmother to the youngest daughter of my best friend from college. I wasn't able to go to the ceremony, of course, but I was there in spirit, and am privileged and honored to hold the title to such a sweet little baby girl.

Jim and I are still doing very well in terms of our relationship (not so much in terms of our health). I am in continued awe and gratitude to be blessed with such an amazing man as my fiance. I only wish we were healthier, and we could see each other more often.

This past spring made 8 years since we've been writing each other every day. For our anniversary, Jim printed out all our email correspondences from the first month we began writing (back in 2003), and placed them all in a beautiful album for me. It was such a sweet and thoughtful gift, and one I will always cherish.

Speaking of my health, things have been very difficult. Sometimes I prefer not to go into the details because I simply don't want to relive the physical hell of it all over again. This illness is so brutal and so utterly pervasive; there is not a single second of any day that it doesn't dominate or alter in some way. That's why these little moments of escape are so lovely, and so necessary. And that's why I am so grateful every day for their brief but welcomed grace.

ME/CFS Memorial

2011-06-22T08:39:00.000-07:00

This video is in honor of Lynn Gilderdale, Sophia Mirza and the many others who have passed on as a result of severe ME/CFS. While these stories are difficult to hear, they are important stories to tell. Their courage must not be forgotten. Thank you for watching.

Compassion and the Power of Words

2011-06-09T07:17:00.000-07:00

A few months ago, a friend shared with me the below video. It really struck a chord. Before I say any more, I'll let you watch it for yourself:

First, let me say that I understand why some people have a problem with this video. Blindness, of course, does not necessarily (or even frequently) render a person homeless or financially dependent. The blind are able to live just as independently and successfully as any sighted person, and indeed many work hard to do so. I certainly understand that.

However, I don't think that's really what this video is about. It isn't about the blind, the homeless or dependency. It's about humanity. It's not meant to evoke pity, but compassion. It's about finding the right words to open people's minds and thus change what they see.

After watching this video, I couldn't help but wonder about our own plight within the ME/CFS community. For nearly 30 years, we have been struggling for people to understand the reality of our illness and thus finally take appropriate action -- action which matches the full scope, urgency and severity of this disease.

Yet, despite all our efforts, the obstacles remain. How do we break through some of those barriers? How can we change our message so that people actually hear us? What can we do and say so that people finally see us?

Those with ME/CFS have a lot to be angry about. I'm angry too. I'm angry at the lack of care and treatments, the lack of funding and research, the lack of respect and recognition, the lack of government response, the lack of understanding within the medical community, the lack of public awareness -- the list goes on. I'm angry that I've lost over 14 years of my young adult life, suffering from a horrible physical disease that has no cure and no accepted treatments, and few people (beyond friends, family and some doctors and researchers) seem to care.

But is anger necessarily the best way for us to advocate? Are public personal attacks against those not on our side -- and even, at times, against those who believe that they are -- really helping our cause?

I recently wrote a very short email to Deborah Kotz, a health reporter at the Boston Globe. I wrote in response to an article she'd written in which she referred to this disease as "chronic fatigue" rather than chronic fatigue syndrome. I explained the difference between the two, and why I feel the word fatigue is both inappropriate and grossly inadequate. I told her a bit of my story and shared with her my 2009 video testimony. I never expected her to reply.

But she did reply. In fact, she not only responded to my email, she actually followed up with an additional blog post in the Globe. She posted my video, acknowledged that CFS is much more serious than she may have first realized, and asked the question: Does Chronic Fatigue Syndrome Deserve a Better Name? (Click on the link to vote).

I was able to reach this reporter not through my anger, but through her sense of compassion.

Most people are not even remotely aware of the full scope of this illness because no one actually sees it at its worst. The suffering goes on behind closed doors. Patients are confined to their beds, often in darkness, unable to speak, unable to tolerate interaction, unable to tell their story. Yet, these are the stories that need to be told. These are the stories that, once seen and heard, cannot be easily dismissed.

Is touching upon people's sense of compassion one of the more powerful ways we can reach others and advocate for ourselves? I don't know. But how can one read the stories of Lynn, Emily, Ben, Sophia or Zoe and not be affected? How can anyone watch the below video and remain blind to what they see?

Voices from the Shadows Trailer from Josh on Vimeo.

What I do know is that there have been years upon years filled with beautiful days that many of those with ME/CFS, confined to our homes and our beds, have not been able to see or fully live. And we desperately want to be set free. We desperately want to see every beautiful day, and have the freedom to live each one fully.

The Magnitude of Time

2011-05-12T07:15:00.000-07:00

My window is open and I can hear the birds singing as a warm breeze brushes against my face. I watch a squirrel sprint up a freshly budded mesquite tree in search of nourishment. My amaryllis plant, sitting by my window, has burst into a bold and colorful blossom with soft swirls of white and pink, as though in some sort of unspoken celebration. Spring has arrived once more.

It's been 10 years now (14 years ill) that I have watched the seasons come and go beyond my bedroom window. Ten springs have turned into summer, and 10 autumns have slowly given way to winter. Ten years of passing seasons that could have been filled with work, children, travel and adventure have slipped away from me, never to be retrieved. Ten birthdays of each and every one of my friends and family members have passed by without my presence. There have been many hundreds of unexplored weekends, thousands of missed opportunities and adventures, and millions of small everyday moments, never experienced, forever lost.

As I watch the various budding leaves and cactus flowers bloom into another season, I wonder how to measure so much loss of time. A full decade has gone by as I lay on the sidelines -- forced to spend each day in this tired and lonely bed, quiet and immobile. While time escapes me, the magnitude of that time does not.

What would my life had been had I not gotten sick? What would the lives of 17 million others afflicted with this disease have been?

Today is International ME/CFS Awareness Day. For the millions who are sick, for the millions who have lost years of their lives, and for the millions more who will later become afflicted, please take a moment from your day to reflect and remember. If you know someone with ME/CFS, take the time to write them a quick note and let them know you care, and you have not forgotten them. Take time to learn more about this devastating disease and help spread the word to increase awareness. Take the precious time and the blessing of good health that so many ME/CFS patients have lost, and savor it. Savor it not just for yourself, but for them. For all of those who have lost so much, and who so desperately want their lives back.

This post was written in advance and pre-scheduled to post on this day. I continue to be offline more than usual as I recover from recent activity and subsequent setbacks. However, I welcome comments as I always love to hear from you! It just may take awhile before they are posted. :)

Make A Difference: Vote for the WPI

2011-04-23T08:06:00.000-07:00

Thank you for all your kind and supportive comments in response to my last post. I continue to be offline even more than usual as I recover from recent setbacks and ongoing activity. However, for those who may be unaware, I wanted to tell you that Chase Community Giving is holding another charity contest, offering a share in $2,500,000 to the 100 charities that receive the most votes from its Facebook fans. The Whittemore Peterson Institute (WPI) for Neuro-Immune Diseases is one of the charities for which you can vote.

In my opinion, the WPI has done more for ME/CFS research and awareness in the last few years than any other organization or government institute has done in 25 years. I am hopeful that, with enough funds, they will someday soon be able to find definitive biophysical markers, viable treatments (currently none exist) and possibly even a cure in my lifetime.

It is important to note that the WPI is also seeking answers for autism, Lyme disease, atypical MS and other neuro-immune diseases.

To vote for them, all you need to do is the following:
(Note: Facebook account required)

1. Go to: http://www.facebook.com/ChaseCommunityGiving?ref=ts
2. Click "like" on top of the page
3. Go to: http://apps.facebook.com/chasecommunitygiving/
4. Type "Whittemore Peterson Institute" in the search box
5. Click on the WPI and then click VOTE!

And you are done! It takes less than one minute, and could make a huge difference for all those suffering from this disease.

You have 10 votes you can use, so you are free to vote for any other charities of your choice as well. There are also a few other ME/CFS organizations in the running if you'd like to vote for them (search for CFS, CFIDS, ME/CFS, chronic fatigue syndrome or myalgic encephalomyelitis to find them).

Before concluding, I want to take a moment to tell you of a friend of mine who also has severe ME/CFS. Late last year, she suffered a crash that left her eye muscles so weak she was forced to wear an eye mask 24/7, rendering her essentially blind. I have just learned that she recently experienced yet another setback that has severely altered her tolerance to sound. She now lives in total darkness and silence 24 hours of every single day. She writes notes with her eyes closed in order to communicate. In return, her boyfriend replies by spelling out words, letter by letter, in her hand.

Visual problems and sensitivity to light and sound in ME/CFS are not uncommon. I myself suffer from these same symptoms, though thankfully not to such a severe degree. I know many others who also experience these difficulties -- no longer able to be online, read or watch TV. Some are living in darkness, some in silence and some in both.

I have received many emails in the last couple of years from bedridden patients or family members of bedridden patients, telling me details of the utter devastation that this disease has afflicted upon their lives. Some have not left their bed in years; some struggle to eat, drink and even breathe.

I tell you this not to evoke sympathy, but to explain why it is so urgent that we receive funds for research. ME/CFS is a very serious, treacherous disease. It often strikes suddenly (typically following a viral infection), and can afflict men and woman of all ages -- including young children. As with any illness, the disease can range from mild to severe, with some patients experiencing a level of disability equal to that of late-stage AIDS. Yet, not many know the full spectrum of the illness because much of the suffering occurs behind closed doors.

Despite its seriousness and high prevalence (approximately 1 million Americans), ME/CFS remains one of the least funded of all diseases in the United States. More money is spent studying hay fever. We need proper funding to find the answers, discover treatments and a cure, and thus finally end the suffering of millions world-wide.

Thank you so much for your time in reading this, and in voting for the WPI. Please note voting ends on May 4th.

5/5/11 Update: The WPI came in 5th place and won the $25,000! Thank you to all who voted. Please stay tuned for the 2nd round of voting, and a chance for the WPI to win $500,000!

5/27/11 Update: Round two has now ended and the WPI came in 12th place! They won 40k in addition to the 25k in the first round -- with a final total of 65k. Thanks to all who voted!

The Remaining Sunlight

2011-02-20T07:55:00.000-08:00

When I first started this blog, I wanted to find a way to tell my story and speak its harsh reality while still being sure to maintain a sense of hope and optimism. My primary focus, of course, was to raise awareness about how devastating and all-consuming ME/CFS can be, and to show that, though the name may be trivial, the disease most certainly is not.

However, I also wanted to emphasize that we are in no way defined by our illness. ME/CFS may ruthlessly prevent us from fulfilling many of our dreams, but it has clearly not taken away the dreams themselves. People with ME/CFS were once healthy, often extremely active individuals. We were going about our lives like everyone else when we just happened to fall ill -- typically quite suddenly from a viral infection, and certainly through no fault of our own. We desperately want to get well in order to have the privilege of once again living our lives to the fullest.

With these ideas as part of my focus, sometimes (particularly when I'm experiencing an acute crash) I wonder if I may give the impression I handle my illness and my circumstances with greater ease than I actually do.

ME/CFS is brutal. It defies description because it is so far beyond any normal experience of exhaustion or sickness. When faced with such a severe level of illness on a regular basis -- day after day, year after year -- one has no choice but to find a means through which to cope. Over time, I've learned to do this by focusing on the positive, maintaining my sense of humor, and looking within to seek out the small moments of grace. I resolved early on in this battle that I would not let ME/CFS destroy my spirit in the same way it had destroyed my body. And on most days, I do this quite well. My spirits remain strong, determined and hopeful.

However, as anyone would, I have a harder time during a setback. As I have previously stated, it can be quite a challenge to remain consistently optimistic when you feel so sick you can barely move. Not impossible, of course, but difficult.

I recently suffered another long-standing crash. This is my life in the last 14 years, and the nature of this unrelenting disease. Just when I feel like things are improving, I make one wrong move or reach too far, and I am back down again. It's like continuously taking a step forward and then falling a hundred steps back.

While my resolve holds firm, I have to be honest in saying this kind of life can test the extremes of one's endurance at times: the constant battle, the repeated setbacks despite your best intentions, the lack of answers, lack of treatment, the misunderstandings, and the countless downfalls from one wrong movement or one tiny misstep.

I once equated the experience of ME/CFS to what I imagine it would feel like, at least to some degree, to be in an abusive relationship. I say imagine, because fortunately I've never actually been in an abusive relationship (please take note, CDC). However, I would presume that a child who gets brutally beaten every time he/she reaches for a cookie eventually learns to stop reaching for cookies, or to seek out other means so as to not get caught. But what if your abuser (ME/CFS) never, for even one second, leaves your side? And what if your cookie is washing your hair? What if you get beaten over and over again just for trying to get out of bed? For reading one too many words? For speaking?

When punished so severely and repeatedly for such minor activity, I can't help but get discouraged. As my fellow ME/CFS blogging friend, Alexis, described in one of her recent posts, I too tend to go through stages. The first is anger and denial. After fourteen years and what has to be literally hundreds of setbacks, I am still shocked when it happens. Somehow, I continuously convince myself that each crash will be the last, and that things can only get better. And then I reach too far beyond that invisible line once more, and my health plummets yet again.

At its very worst, I have been barely able to move. I have had more days and nights that I care to recall where every breath felt agonizing; where I could feel the energy it takes just to swallow. The experience can be beyond brutal. "No," I think to myself when it first hits, "this is not happening to me again. I cannot face this yet again."

After awhile, I have no choice but to move into acceptance, and attempt to find new adjustments and changes to help lessen the severity and duration of the setback as best I can. Once the agony lifts even slightly, I am so relieved to be remotely functional again, to not be in almost intolerable physical distress all hours of the day, that I am able to find some grace in that, and thus return to a place of gratitude once more.

Things are thankfully a little better than when this crash first began, though I am still in the process of trying to bounce back. In light of the fluctuations in my health, as well as some possible upcoming activity that will no doubt require all my energy, I've decided to take a step back from blogging for a little while and try my best at taking my own advice and learning to be more patient with what is.

Blogging has been an amazing experience these last (almost two!) years, and I am so grateful for the improved cognition that has allowed me to participate in a bit more online activity. I feel especially blessed by all the amazing people I have met as a result, and the wonderful friendships I have been able to form. The many letters and comments I have received over the years have touched me deeply, and they inspire me to keep writing. However, at this time, I feel I need to focus more fully on my health. I will still be around here and there, just perhaps not as frequently for awhile.

For now, I will leave you with a few photos of some of my most recent bird visitors (click on the photos to enlarge them). No matter how bad things get for me in my small world, I am always so grateful for the song that exists in theirs. They remind me to keep singing even if my song must currently be silent, and to stay focused on what sunlight still remains to me.

A Rare Falcon Sighting
(he was much bigger than he appears!)

Falcon

Road Runner (beep beep)

Finch Singing

Finches Munching

Another Finch Munching

Mourning Dove and Goldfinches

House Finch Flying Above Goldfinches

Hummingbird

Female Cardinal

Gilded Flicker Woodpecker

"Hey, isn't it my turn yet?"


Two Finches Kissing "Get a room!" says the third finch :)


Finch at sunrise

Birds sing after a storm; why shouldn't people feel as free

to delight in whatever sunlight remains to them?

--Rose Kennedy

Here's hoping there will soon be more sunlight for us all.

Becoming Visible: Advocacy and Awareness

2011-02-12T05:04:00.000-08:00

There are several new ME/CFS awareness and advocacy efforts currently in place that I wanted to share with you.

First, Dominique at 4Walls and A View has just launched Invisible Awareness, a website to promote personal ME/CFS stories in the hopes of making our plight more visible. On the 12th of each month (in honor of May 12th Awareness Day), there will be a new article featuring someone's individual experience with ME/CFS and how it has affected his/her life. The goal is for everyone to then share the website on various social outlets so that it reaches more people. In this way, we will be helping to raise awareness "1 story at a time."

I am honored to have the first featured article on the website! You can find it by clicking on the image below.

Some of you will already recognize my story, but please do check it out and share it with others so that the website gets lots of visibility. Please also consider contributing your own personal story to be featured at a later date. For more information on the site's goals and mission, as well as on how to get involved, please contact/visit Dominique directly at 4 Walls and A View, or at the Invisible Awareness website.

There are also several other new advocacy efforts in place to help increase awareness and raise funds for ME/CFS research. One such effort is blogger Lee Lee's project Art for XMRV, a website where artists can contribute their work for sale, and others can purchase them in the form of note cards. All proceeds (100%) will go to the Whittemore Peterson Institute (WPI). Click below for more information, or to purchase some of the beautiful artwork already submitted! You can also join the community board on Facebook.

My friend and fellow blogger, Vikki, has also teamed together with others to create a fundraising effort for the Whittemore Peterson Institute called Count Me In. The goal is to get as many people as possible to pledge just $1 on the 20th of each month to the WPI. That's only $12 a year! It may not seem like much, but it adds up. The fundraising event raised over $600 on it's opening day last month. If interested, please see the link above, visit Vikki's blog, or join the effort on Facebook for monthly reminders.

Of course, you can always go directly to the Whittemore Peterson Institute website to donate as well.

Peggy Munson, author of the book Stricken: Voices from the Hidden Epidemic Chronic Fatigue Syndrome, has called patients to take action through her new advocacy effort called The Exit Project: Groundswell Campaign. To participate, you need only take a photo of yourself lying down with an X somewhere in the picture (X for XMRV and for being X'd out by illness). Then write a short blurb about how ME/CFS has grounded you and altered/changed your life. Submit the photo along with your story (it need not be long) to Peggy for inclusion on her website, then email it to various government officials so that they hear our plight. For more specific details and instructions, please click below to read Peggy's full description. The more people we have participating, the stronger our collective voice. (Note: you do NOT need to have been tested for XMRV to be included; anyone with ME/CFS is invited to submit a photo).

In other efforts, the ME/CFS Worldwide Patient Alliance is a new advocacy group formed in August 2010 in response to "a community-wide call for greater patient empowerment and influence." They placed the first ever ad about ME/CFS in the Washington Post this past December. Please visit their website to find out how you can get involved in their "Show 'em Your Mad - Fax the Ad!" campaign, as well as other upcoming advocacy efforts. You may also want to visit their newly launched Zazzle.com store to purchase some cool merchandise and help them raise funds.

Other ongoing awareness campaigns already mentioned on this site that you may want to visit include the Blue Ribbon Campaign and the Sock it to ME Campaign.

If you haven't already done so, you can also watch my new awareness video -- What is ME/CFS? -- and be sure to pass it on and spread the word.

As many of you know, there have been a lot of ongoing negative politics (to put it politely) at the CDC and NIH in terms of ME/CFS research in the last 25 years. These politics continue to cause delay of solid biophysical research, as well as the hope for viable treatments in the near future.

The history of the CDC's reaction to ME/CFS since the initial outbreak in the U.S. in the early 1980's has been, quite frankly, rather abominable. Dr. Elizabeth Unger, has recently been selected as the new head of the CDC CFS program, and thus far, she seems to be advocating for more of the same. Please consider signing a petition which urges the CDC to promptly change the direction of their CFS program toward more biophysical research.

Petitions by Change.org|Start a Petition »

[Update 2/13/11: Dr. Unger has responded to the petition. Please see PANDORA's announcement here. The petition will close on February 15th. Thank you to all who signed!]

Last October, the CFS Advisory Committee once again met to provide recommendations to the Secretary of Health on what directions to take in terms of both CFS research and strategic planning. A copy of those recommendations can be found here. If you agree with these recommendations, please take a moment to send a letter to the Secretary of Health, ask her to implement them and let her know we are awaiting her response. The letter is already written for you -- just fill in the blanks with the appropriate info. It only takes a couple seconds! Of course, if you prefer, you can also write your own letter instead.

From what I understand, there has been quite a bit of internal disagreement within the ME/CFS community on how and whether we as patients can unite and rally together for our cause (e.g., see Mindy Kitei's editorial "We Are Not Crumbs," and Marly Silverman's commentary Time to Make a Difference Together).

I have not been following the debate very closely, as I am too sick to be active on message boards or follow too many blogs. Perhaps I am therefore a bit naive. However, my own opinion on the matter is that those who are willing and able MUST find a way to unite.

Unity doesn't mean we have to always agree with each other. It doesn't mean we cannot offer constructive criticism or advice on what directions any organization may want to take to move forward. It means simply that we must agree on a common goal, and work towards that goal with mutual respect and some measure of solidarity.

I think we all want change. We want the WPI to get funded. We want more biophysical research, new direction at the CDC and NIH, increased awareness within the medical community and the public at large. We also want clinical trials, and research into treatment that propels us forward toward a cure.

Working together, we CAN make a difference and ignite change. I urge you to take as many actions above as possible. A lot of people have asked me what they can do to help, and these are just a few small things that can ultimately make a huge difference. It's time for our voices to be heard. It is only then that we can move forward towards better research, treatment and a cure.

Thank you!!

UPDATE 11/26/11: Many things have changed since this post was originally published:

The Invisible Awareness website has been changed to Becoming Visible 4ME
Art for XMRV has changed its name to Art for ME. Proceeds will go toward an ME/CFS institute to be decided upon at a later date
Count Me In has ended its campaign
The Exit Project has ceased.

What Dreams May Come

2011-01-11T05:46:00.000-08:00

As I've mentioned in previous posts, I fell ill with mononucleosis on New Year's Eve 1996. It was this infection that so suddenly initiated what ultimately grew into a diagnosis of ME/CFS. I can still vividly recall counting down the last few seconds of that year with as much hope and optimism as always, excited for what great things 1997 would bring me. I was young and successful; my whole life awaited me. I never anticipated I would wake up the next morning, my health rather abruptly stolen from me, with a continuous decline ahead that would last what has now been 14 long years.

This being the anniversary of my illness onset, the new year, understandably, brings with it a mix of emotions. While I remain stubbornly hopeful, that hope is now admittedly a bit more cautious in its enthusiasm. I have grown somewhat wiser over the years, and more keenly aware of life's uncertainties. While I continue every day to hope and strive for the possibility that this year finally brings some measure of recovery and/or a cure, I must also be prepared for the possibility that it will not. In this way, my day-to-day happiness is not as reliant on expectations. That is, whatever each day of the new year may bring, I am better able (at least theoretically) to be patient with what is, and at the same time, remain determined and hopeful for the future.

But while my daily hopes have become more cautious, my dreams have not. My dreams run bright, limitless and free. Whether it is this year or next, I am steadfast in my belief that one year, one day, at least in some form, they will indeed come true.

Among many other things, today I find myself dreaming of...

Having the freedom to run barefoot in the grass

Or play in the rain

Going on a picnic

Or spending a day at the beach

...doing cartwheels

Getting my master's degree

And going back to work
Being able to take long, hot bubble baths

....and dance the night away with my fiance
Traveling to far away places

Hiking up mountains

Taking long bike rides
And long, leisurely road trips

Finally celebrating our wedding day...
and our honeymoon...

and having the chance to start a family

Most of all, today I'm dreaming of perfect health;
of breaking free

and shouting to the world with joy:

"Within your heart, keep one still, secret spot where dreams may go."

~ Louise Driscoll

"Dreams come true; without that possibility, nature would not incite us to have them."
~ John Updike

All photos from: weheartit.com

New Video: What is ME/CFS?

2010-12-19T06:17:00.000-08:00

Due to my health, the above video took me a little over 4 months to complete. I created it in the hopes that it might help, even in just a small way, to increase awareness about ME/CFS. This is an important time in the history of the disease, and awareness and advocacy are essential in helping to ensure that funding and research move forward.

My fiance is in this video, as are some good friends and people I have long admired. I hope their photos help put a face to this illness. They each have a story to tell, as do the 17 million others who suffer from ME/CFS world-wide.

I have disabled comments on YouTube because I am simply too sick to monitor them on a regular basis. However, you are free to give the video a thumbs up or down as you see fit. :) Please also feel free to repost the video and share it with others.

In other ME/CFS news, as most here will already know, last week an advisory committee to the Food and Drug Administration recommended that patients with CFS be banned from donating blood (through a new, routine screening question). This, of course, is in light of the possible link between ME/CFS, XMRV and other MLV-related retroviruses. You can read more about this recommendation in the Wall Street Journal article, New Blood-Screening Advised.

The American Red Cross has also recently banned CFS patients from donating blood. This decision follows Canada, New Zealand, Australia and the UK -- countries which all banned blood donations from ME/CFS patients in the last year.

Here's hoping the new year brings even more promising developments, particularly in the form of well-designed research studies and clinical trials. Perhaps then we can finally have definitive answers, and thus a treatment or cure that allows each and every one of us to get our lives back.

Wishing everyone a healthy, happy holiday season!

Christmas and M.E.

2010-12-16T10:02:00.000-08:00

The latest edition of Life Skills Magazine has a wonderful bumper edition intended to help raise awareness about ME/CFS. The special edition "Christmas and M.E." includes an article I wrote about my experiences with ME/CFS and the increased challenges it presents during the holidays. It is entitled "Without a Sprinkle of Doubt." You can find it by clicking the image below:

There's also another special section which contains interviews of several bloggers (myself included!) who have contributed to the magazine in the last year:

The magazine includes articles and interviews from several other ME/CFS bloggers you may recognize. I feel privileged to again be included with such wonderful writers and fellow ME/CFS friends I've long admired. Please check it out! The full edition of the magazine is located at the Discovering Purpose website.

Finding Grace When "Life is Hard"

2010-11-23T09:45:00.000-08:00

When I was a little girl, I remember often being told by a variety of adults that "life is hard." This was most typically said when I complained about something I saw as terribly unreasonable or unfair, such as not being able to eat dessert without first finishing all the broccoli on my plate. While this certainly did seem like a rather cruel injustice, I always found this particular response to my protests a bit puzzling. Was life really all that hard? It certainly didn't seem that way to me. Granted, I may have only had four or five years of experience at the time, but, for the most part, life actually seemed pretty spectacular. The repeated sagas over broccoli and other such matters were indeed quite frustrating, but overall, I absolutely loved being a kid. Life was new and exciting and full of wonder.

Yet, adults seemed to repeat this phrase rather consistently, as though it were some long-accepted truth that children just needed to learn as they grew older. And while I did come to understand it in terms of dealing with disappointments, struggle, death and loss, I still didn't quite get why even the smaller issues of life so often garnered this response. Why did adults seem to find life so troubling? Like most kids, becoming an adult was something I looked forward to with great eagerness. After all, it was they who got to make all the decisions and have the final say on every single topic of importance. What's not to like? :)

I understand it now, of course. Children can't possibly grasp the wide range and weight of responsibilities that accompany adulthood. Grown-ups yearn to be kids again, and kids yearn to be all grown up.

Still, I remember thinking that adults didn't always seem to fully appreciate all their much-coveted privileges. They even actually sometimes complained about them. They had too many bills and not enough time. They didn't appear to have quite the same energy and awe for life that children did. They didn't stop to take notice of the small things as much.

Struck by this realization one day as a young girl, I vowed to be different. I vowed to be fully grateful of all the special perks of adulthood when I grew older. I would always appreciate the little things and continue to look at life as being grand, not hard. I would make it a point to try not to complain about small, mundane inconveniences.

I confess I am not sure just how well I have done with this little goal of mine over the years. If I am honest with myself, I've probably been far less successful than I'd like to admit. For the most part, though, even when I lost sight of the good in any given circumstance, I was generally always able to return to a place of gratitude.

And then... I got sick. Really sick. My life was turned upside down until it essentially came to a standstill. Everything I had just begun to build for myself was slowly slipping away. From my social life, to my hopes of finishing graduate school, to the career I'd enjoyed and had just started to begin. The more I tried to push past it, the more I lost. As the years went on, simple, everyday privileges that I had not even recognized as privileges (the ability to shower, walk, talk, read, watch TV, get out of bed) suddenly started to disappear.

I actually remember once wondering if God had heard that little, silent declaration of mine all those many years ago and decided to respond with this, the ultimate in a series of complaint-inducing circumstances, as some sort of resounding challenge.

No doubt it has been incredibly trying at times, given the downward turns my life ultimately took, to keep that long-ago vow of mine. It was particularly difficult for me when I first became ill. I saw my life slipping between my fingers at what felt like whirlwind speed, and I couldn’t help but be overwhelmed by it all, especially given how little others (or even I) understood what was happening to me.

Clearly, the challenges of this illness are beyond enormous. It has literally and ruthlessly invaded every aspect of my life. There are times, particularly during setbacks (which, given the nature of this illness, are quite frequent), when I want to throw all positivity right out the window. There is so much loss, grief and frustration to grapple with, not to mention the all-encompassing physical distress that can coincide with such a setback. It can be an arduous task to focus on gratitude when you feel so sick you can barely move.

I often dump my frustrations on my fiance during those times, because I know he understands them. Then I feel bad for doing what I had always vowed to avoid, and allowing myself to whine. My fiance assures me I am not whining, but merely coping, and finding my way through what would otherwise be an intolerable situation. I'm not always so sure, though I do recognize the need to share such emotions from time to time and not keep them all bottled up.

Those of us stricken with this disease face every day the kind of loss, disappointments, deterioration, limitations, struggle and physical distress that most people don't experience until they are near the end of their life. Consequently, it is beyond reasonable, even perhaps essential to coping, to often feel complete and utter exasperation, as well as to at times experience deep sadness over what is lost and what we are missing out on, or on all that could have been. This, after all, is not your average life. This is not the life any of us, even in our worst nightmares, ever anticipated for ourselves.

It is, however, still a life. I once had a doctor tell me that my life could not really even be called a life at all. To that, I must fervently disagree. Who is to judge the value of any given person's life? Undoubtedly, this is not the road I chose or would have ever wanted for myself, and there is nothing in this world I wouldn't do to change it. And it is true that my dreams, my ambitions, my education, my career and all my hopes and goals have, thus far, gone by the wayside. And that, in any circumstance, is indeed a tragedy. But my life, with all its struggles, loss, pain, limits and difficulties, is still a life. It still has value. It still has joy and love and dreams and meaning and hope.

Today, as I write this, I am so grateful for the grace of my young self who, in her innocent, little girl wisdom, somehow knew that I would later need the constant reminder. I would need the reminder to try to stay focused on the positive even in the midst of struggle, to acknowledge my blessings despite despair, and to take stock of the beauty that surrounds me and that always, under any circumstance, remains visible -- even if from afar. Life is simply far too sweet to spend it being bitter.

This has been an extremely rough journey for me. It has tried my patience and endurance in ways, when healthy, I never could have imagined. And yet, through it all, I need to remember that I've still had birds, butterflies, cactus blooms and beautiful mountains outside my window. I've still had the love of my friends and family and my adoring (and equally adored) fiance. Despite my body's failings, it still has breath. It still holds my spirit, which, though at times shaken and tested, remains strong and able. And it is with that resilience of spirit that I will continue to hold on to the undying faith that someday, somehow, things will get better.

Even now as an adult facing such difficult obstacles, I still don't think I really agree that life is hard. It's our individual circumstances that are hard. It's not being able to live your life to the fullest that is hard. But life itself is pretty amazing.

Bird Song

2010-11-21T12:25:00.001-08:00

click photos to enlarge

"A bird doesn't sing because it has an answer, it sings because it has a song."

-- Maya Angelou

Quotes: Finding Expression Through Others

2010-10-04T08:07:00.000-07:00

I love when someone writes or says something poignant that resonates with me, that makes me think of or see life in a new way, or that fills me with a sense of awe and peace. I love when an emotion or insight that I had been unable to express myself is so perfectly articulated for me through the words of others. Whenever I am struck by a person's thoughts or writings, I scribble them down, or type and print them out to place in a special journal I've kept throughout the years. Or rather, in one of what has now become several journals.

I started collecting quotes long before I fell sick, and continued for many years thereafter. For the most part, however, I am now too ill. It simply takes too much energy. As I've mentioned before, I can only listen to books on audio, so I therefore have to transcribe what I hear in order to jot anything down. This can often be a bit painstaking, especially if the quote is long.

I do still have quite a few quotes saved on my laptop though, and I thought I'd share a few of those with you today. They are not necessarily my favorites -- just ones I had readily available. As you will see, most of the quotes I collect are ones that I can relate to in terms of illness, struggle, one's inner spirit, and finding the beauty of life despite suffering. I hope some of them resonate with you as well.

Once again, this will likely be my last post for some time, unless there is any breaking news to comment on. My health has not been its best, to say the least, and this month will be one that requires all my energy and focus. I hope to be back fairly soon however, and wish everyone a happy fall season.

***

I can be changed by what happens to me. But I refuse to be reduced by it.
— Maya Angelou

***

You are the knowing, and not the condition that is known.
-- Stillness Speaks by Eckhart Tolle

***

Really, no matter how frightened and discouraged I may become about the future, I look forward to it. In spite of everything I see all around me everyday, I have a shaky assurance that everything will turn out fine. I don't think I'm the only one. Why else would the phrase "everything's all right" ease a deep and troubled place in so many of us? We just don't know. We never know so much, yet we have such faith. We hold our hands over our hurts and lean forward, full of yearning and forgiveness. It is how we keep on, this kind of faith.
--Talk Before Sleep by Elizabeth Berg

***

Everything is holding its breath inside me. Everything is waiting to explode like Christmas. I want to be all new and shiny. Not this way, every evening talking to the trees, leaning out my window, imagining what I can't see.
--The House on Mango Street by Sandra Cisneros

***

Something in me did not want to give up on life, was unwilling to let go, wanted to fight to the very end. Where that part of me got the heart, I don't know.

Some of us give up on life with only a resigned sigh. Others fight a little, then lose hope. Still others, and I am one of those, never give up. We fight, and fight and fight. We fight no matter the cost of battle, the losses we take, the improbability of success. We fight to the very end. It's not a question of courage. It's something constitutional, an inability to let go. It may be nothing more than life-hungry stupidity.

With the every first rays of [morning] light, it came alive in me: hope. As things emerged in outline and filled in color, hope increased until it was like a song in my heart. Oh, what it was to bask in it. Things would work out yet. The worst was over. I had survived the night. Today, I would be rescued. To think that, to string those words together in my mind, was itself a source of hope. Hope fed on hope.
-- Life of Pi by Yann Martel

***

Life, even at it's simplest level, occurs apparently just for its own sake. It is easy to overlook this thought, that life just is. As humans, we are inclined to think that life must have a point. We have plans and aspirations and desires. We want to take constant advantage of all the intoxicating existence we've been endowed with. But what's life to a lichen? Yet it's impulse to exist to be is every bit as strong as ours -- arguably even stronger. If I were told I would have to spend decades being a furry growth on a rock in the woods, I believe I would lose the will to go on. Lichens don't. Like virtually all living things, they will suffer any hardship, endure any insult, for a moment's additional existence. Life, in short, just wants to be.
--A Short History of Nearly Everything by Bill Bryson

***

Be careful reading health books. You may die of a misprint.
--Mark Twain

***

I wish so much that you could get hold of the idea of what perfection in this world consists of. It is not like going up a great hill from which we see an ever widening landscape, a greater horizon, a plain receding farther and farther into the distance. It is more like an overgrown path that we cannot find. We grope about, we are caught by brambles, we lose all sense of the distance covered. We do not know if we are going around and around, or if we are advancing. We are certain only of one thing: that we desire to go on, even though we are worn and tired. That is your life, and you should rejoice greatly because of it. For it is a true life, serious and real, on which God's eyes and heart are open.
--Abbey de Trouville

***

People go forth to wonder at the height of mountains, the huge waves of the seas, the broad flow of rivers, the extent of the ocean, the course of the stars -- and forget to wonder at themselves.
--St. Augustine

***

For attractive lips, speak words of kindness. For lovely eyes, seek out the good in people. For a slim figure, share your food with the hungry. For beautiful hair, let a child run their fingers through it once a day. For poise, walk with the knowledge that you never walk alone. People, more than things, have to be restored, renewed, revived, reclaimed and redeemed.
--Audrey Hepburn

***

Words fail me sometimes. I have read most every one in the Webster's International Dictionary of the English Language, but still have trouble making them come when I want them to. Right now, I want a word that describes the feeling you get -- a cold, sick feeling deep down inside -- when you know something is happening that will change you, and you don't want it to, but you can't stop it. And you know for the first time, for the very first time, that there will now be a before, and an after. A was, and a will be. And you will never again be quite the same person you were. What is the word for that feeling? For knowledge and fear and loss all mixed together?
-- A Northern Light by Jennifer Donnelly
(this made me think of the moment I first got sick, as well as some of my more serious health setbacks)

***

Everything can be taken from a man but one thing: the last of the human freedoms -- to choose one's attitude in any given set of circumstances, to choose one's own way.

When we are no longer able to change a situation, we are challenged to change ourselves.
—Man's Search for Meaning by Viktor Frankl

***

Beyond there is light and music and sweet companionship, but I may not enter. Fate -- silent, pitiless -- bars the way. Fain would I question his imperious decree, for my heart is still undisciplined and passionate; but, my tongue will not utter the bitter, futile words that rise to my lips, and they fall back into my heart like unshed tears. Silence sits immense upon my soul. Then comes hope with a smile and whispers, ‘There is joy in self-forgetfulness.’ So I try to make the light in others’ eyes my sun, the music in others’ ears my symphony, the smile on others’ lips my happiness.
--The Story of My Life by Helen Keller

***

You are as prone to love as the sun is to shine.
--Thomas Traherne

***

Perhaps the worth of any lifetime is measured more in kindness than in competency.
--Rachel Naomi Remen

***

Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says "I'll try again tomorrow. "
— Mary Anne Radmacher

My October 2010 CFSAC Testimony

2010-09-19T09:45:00.000-07:00

On October 13th and 14th, the CFS Advisory Committee will once again be meeting to provide recommendations to the Secretary of Health on what directions to take in terms of CFS research and strategic planning.

At last year's meeting, my video testimony was presented. This year, I submitted my testimony in writing. You can find it below. It's long. I had a lot to say. I also sound a bit fed up. It's because I am. :)

Special thanks to all those who graciously assisted me with proofreading and source verification.

*****

Dear CFS Advisory Committee,

I would first like to thank the CFSAC committee members for your time, perseverance and dedication. Your service on this committee is invaluable to all those who suffer from this devastating illness.

I gave a video testimony a year ago and was grateful for that opportunity. I regret to inform you that my health has declined even further since that time. It is for this reason that I am unable to give a video testimony again today, and must therefore instead send it in writing.

I got sick when I was 24 years old quite suddenly from a virus. I am now 38. I cannot stand, walk, talk, care for or even fully bathe myself. I have lost 14 years of my young adult life. Fourteen years that were supposed to be filled with career-building successes, travel, volunteer work, adventure, marriage and children. Instead, I have had over a decade of my life completely wiped away by this illness, and without a single genuine moment of reprieve.

I had graduated magna cum laude from a top university and was at the start of a great career at a well-known publishing company when I initially fell ill. I had just completed my first course in graduate school, hoping (at the time) to get a master's in human resources management. I had big plans for my life. I wanted to make a difference in the world.

But I won't carry on about my personal story again today, because I know government agencies are probably more interested in objective findings and numbers. So let's talk findings and numbers then.

There are 1 to 4 million people with ME/CFS in the U.S. alone, and at least 17 million world wide. Every one of those people has a story. Every one of them means the world to their individual family and friends. Every one of them, were they not ill, could have made great contributions to society. And every one of them deserves to have their illness, which the CDC has admitted can be as or even more debilitating than MS, lupus, cancer and AIDS, be taken every bit as seriously as those illnesses are taken. They deserve the same amount of funding, advocacy and biophysical research into the cause and treatment of their disease.

It has been estimated that ME/CFS costs the U.S. economy at least 9 billion dollars in lost productivity alone, with the full economic impact estimated to be as high as 24 billion.[1][2] Yet, despite its seriousness, prevalence and cost to the economy, ME/CFS remains one of the least funded of all illnesses in the United States, with a mere 5 million dollars allocated towards it by both the NIH and CDC each year. More money is spent studying hay fever and attention deficit disorder than ME/CFS. In fact, ADD gets an astonishing $55 to $111 million more in funds every year than ME/CFS.[3]

It is simply inexcusable that an illness which afflicts up to 4 million Americans and can leave some of its patients unable to walk, stand or care for themselves would get less funding than virtually any other illness in existence. This absolutely and unquestionably must change. More funding needs to be allocated to biophysical research, and without hesitation or delay. There are thousands of published, peer-reviewed studies showing a clear, biophysical pathogenesis in CFS. It's past time to greatly expand this biomedical research, and to do it quickly and effectively.

As everyone on this committee is already well aware, last October, Science Magazine published a study showing that 67% of ME/CFS patients tested positive for the newly discovered human retrovirus XMRV (part of the murine leukemia virus (MLV) family of gammaretroviruses).[4] In August of this year, the FDA/NIH found MLV-related viruses in up to 87% of ME/CFS patients.[5] Each study also found this family of retroviruses in up to 3-7% of healthy controls. As such, the FDA/NIH estimated MLV-related viruses to be in the blood donation supply at between 3-7%.

I don't think I need to point out how incredibly significant and important this is, on multiple levels, nor how urgently more needs to be done. We must immediately examine the role of XMRV and MLV-related viruses in ME/CFS, and what that means in terms of pathology, treatment options (through clinical trials) and prognosis. Funding should be given to those agencies, such as the Whittemore Peterson Institute, the Cleveland Clinic or the National Cancer Institute, that have demonstrated the ability to actually find this family of retroviruses, rather than to those who have shown that they can't.

In fact, it is important to note that the Centers for Disease Control (CDC) did not find XMRV or MLVs in ME/CFS.[6] They also couldn't find it in healthy controls. They couldn't find it period.

This lack of ability to find MLVs in the CDC samples points to many problems in methodology and patient sampling. As Dr. Suzanne Vernon of the CFIDS Association of America pointed out, the CDC's test tube collection methodology was not suitable for viral isolation.[7] Further, the CDC used their highly inadequate “empiric definition” of CFS, and thus included patients who merely had fatigue and did not have CFS. They themselves state the following about their study participants:

These CFS cases are different from CFS patients seen in general practice and referral clinics; of the participants from the population based study in Georgia, only half had consulted a physician because of their fatigue, about 16% had been diagnosed with CFS, and 75% described an insidious onset to their illness that had no obvious relation to an acute infectious disease. (Retrovirology, 2010; 7:57)

This is indeed contrary to most cases of CFS, which often have a sudden, viral (i.e., infectious) onset. Also, I found it rather peculiar that a study of a specific disease would only have 16% of one of its study cohorts actually diagnosed with that disease. This can only mean that approximately 84% of the subjects in this study population had not been diagnosed with the very disease the CDC claimed to be studying.

What this clearly shows is how little the CDC understands CFS, and how imperative it is that all use of their highly inaccurate empiric definition immediately cease in order for any kind of research to actually move forward. A recent study by Dr. Leonard Jason has already shown that the empiric definition erroneously includes people with psychiatric illnesses who do not have CFS.[8]The CDC is the only one to use this definition, and it serves no purpose but to confuse patient populations and create conflicts in research findings.

It is also important to note that the 1994 Fukuda CFS definition is equally inadequate and out of date. According to this definition, patients need only have four out of eight symptoms and to have experienced “fatigue” for six months or longer. You don’t need to be a scientist to see that patients studied under this broad of a definition could end up including people of various and entirely different illness etiologies.

Furthermore, the Fukuda criteria does not list post-exertional malaise, one of the true hallmarks of this disease, as a requirement for diagnosis, but rather only as one of several potential symptoms. How can something that many CFS patients describe as the most debilitating aspect of their illness not be required as part of the criteria for diagnosis?

The 2003 Canadian Consensus definition is the most accurate one to date, and as mentioned above, the Whittemore Peterson Institute and its collaborators have already shown what research using this well defined case definition can look like.

All research on CFS should now require the Canadian Consensus Criteria, or at the very least, the Fukuda criteria (with post-exertional malaise as an absolute essential for inclusion), for their patient sampling so that research can actually be effective. Seven years have gone by with the CDC dilly-dallying over random telephone interviews and questionnaires while a clear, concise and accurate definition of CFS already existed. It's time to adopt it and move on.

In addition to a proper definition, the name chronic fatigue syndrome must be changed back to its original name -- myalgic encephalomyelitis -- or a new name that accurately reflects the true nature and physiology of this illness. This illness is not about being fatigued, but about being terribly sick.

Harvard University's Dr. Anthony Komaroff, a long respected ME/CFS specialist, was recently quoted as saying:

"... there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. So that makes it neurological. That's why I think it makes sense ...to call it myalgic encephalomyelitis or encephalopathy, because I think those two words adequately classify or describe an underlying biology that tests have shown to be the case." [9]

As such, CFS also needs to be removed from the Office of Women's Health. It doesn't belong there, and never did. ME/CFS is not a woman's disease. It afflicts both men and women, as well as young children. It does not discriminate.

I would also like to point out that, in May of this year, Dr. Martin Lerner published a study in Virus Adaptation and Treatment showing some benefit in treating ME/CFS patients with high dose antivirals over several years.[10] While this was encouraging, I am struck by the fact that, in the nearly 30-year history of this illness in the U.S., despite most cases of ME/CFS having a sudden viral onset and clear evidence of immune dysfunction, the CDC has, to my knowledge, never done one single long-term study on antiviral treatment in ME/CFS.

What concerns me most about Lerner's study is this: the longer the patient had been sick, the less likely they were to respond to treatment. Let me repeat that. The longer the patient had been sick, the less likely they were to respond to treatment.

It is also worth noting that Dr. Leonard Jason published a study in 2006 showing that people with ME/ CFS die of cancer and heart failure at rates significantly higher and at ages significantly lower than the normal population.[11]

Do you see the urgency here? We cannot afford to wait any longer. Not just because our lives are slipping away. Not just because we are enduring a living hell day-in and day-out year after year. But because every day that government health agencies dismiss us, wait to take action or fail to respond is one more day we lose in our chances of ever recovering at all.

Please listen carefully to the testimonies being presented today. We are not asking for much. We are simply asking for the basics of what should be expected with any illness: a clear and accurate definition, an appropriate name that doesn't belittle the disease, adequate funding, clinical trials, awareness and serious biophysical research. That's all. It's what is done for every other illness of equal severity. It's even what is done for illnesses of lesser severity. Why is it so hard for it to be done for ME/CFS?

I urge the CDC and NIH to take action immediately. We don't have time to wait around and accept any excuses anymore. Every year these meetings come and go, the same recommendations are made over and over again, and nothing ever comes of it. We don't hear back. This year, I want to hear back, and I really don't want to hear any no's. I've already lost 14 years of my life to this devastating disease. My fiance (who, it is worth noting, was a former athlete and earned a PhD from Carnegie Mellon) has lost over 26 years. Twenty-six years. That is nearly half a lifetime.

The CDC has wasted three decades on poor definitions and poor science. We don't have any more time to waste. We want our lives back, and we want them back now.

Thank you.

References

[1] Reynolds KJ, Vernon SD, Bouchery E, Reeves WC: The economic impact of chronic fatigue syndrome. Cost Effectiveness and Resource Allocation 2004:4

[2] Jason L, Benton M, Valentine S, Johnson A, Torres-Harding, S: The economic impact of ME/CFS: Individual and societal costs. Dynamic Medicine 2008, 7:6

[3] NIH Research Portfolio Online Reporting Tools

[4] Lombardi V et al.: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome. Science 2009, 326: 585-589

[5] Lo SC, Pripuzova N, Li B, Komaroff A, Hung GC, Wang, R, Alter H: Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors. Proceedings of the National Academy of Sciences 2010, 107: (36) 15874-9

[6] Switzer W et al: Absence of evidence of Xenotropic Murine Leukemia Virus-related Virus infection in persons with Chronic Fatigue Syndrome and healthy controls in the United States. Retrovirology 2010, 7:57

[7] Vernon S: Blood From a Stone, The CFIDS Association of America, July 2010

[8] Jason L, Najar N, Porter N, Reh C: Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition. Journal of Disability Policy Studies, 2009, 20:93

[9] Komaroff, A: Lecture through the Massachusetts CFIDS/ME and FM Association entitled “The Latest Research on CFS,” April 2010

[10] Lerner M, Beqaj S, Fitzgerald J, Gill K, Gill C, Edington J. Subset-directed antiviral treatment of 142 herpesvirus patients with chronic fatigue syndrome. Virus Adaptation and Treatment 2010, 2: 47–57

[11] Jason L, Corradi K, Gress S, Williams S, Torres-Harding, S: Causes of Death Among Patients with Chronic Fatigue Syndrome. Health Care for Women International 2006, 27:615–626

Wonders of Life

2010-09-05T10:11:00.000-07:00

An April 2003 Journal Entry

I had one of those rare but stunning moments the other day where I just felt flooded by the utter profundity of this world – at the miracle of actually being alive and part of this infinite web we have yet to fully understand.

Every day I lie in my bed in virtual stillness, yet I am also simultaneously spinning at dizzying speeds with billions of others on a beautiful, blue-green orb within an endless, incomprehensibly massive universe. And, even more miraculous, I am blessed with the human ability to be fully aware of that fact, and to ponder and be in awe at the meaning of it all.

Sometimes, I look out my window at the beauty of the mountains and trees and all the cacti. Or at the birds fighting for food on the feeder we have provided them. Or the bunny rabbits who visit me from time to time, scurrying about or just sitting there in some kind of quiet reflection I don't fully understand. And I think about how all these things are all distinct forms of being-ness. All these things are alive in various forms of consciousness that each differ from mine. And yet, in so many ways, we are the same. We are all alive and experiencing the world through our endlessly unique roles and abilities, and we all have the same basic, inherent needs and desires -- to be nourished, to thrive, and to simply be as we were created to be.

Other times I just lay with my eyes closed in meditation and try to feel this life inside me, as well as this sickness that has taken so much from me. I let myself go to the middle of it and feel the agony of it to the core. And I wonder at the fact that my internal body actually knows what’s wrong with me, yet “I,” my mind, does not. My body somehow knows what has gone astray, and it is desperately trying to fix it for me or to compensate for it in some way. It is failing, of course, but it is indeed trying. How does it know where to begin, or what to even attempt to do? How does it know and function beyond what I myself can comprehend? Every cell of my body seems to carry its own intelligence, independent of what I define as “me.” How extraordinary is that?

In my questioning, I start to marvel at how incredible the human body is. Do healthy people really consider the miracle of their wellness, when so many things could go wrong and yet rarely ever do? Do they understand it, glorify in it, breathe it in every second of every day? Do they dance with joy at their good fortune? Do they know the tremendous gift that they have been blessed with, and do they appreciate it? I mean, REALLY appreciate it, with all their being?

Sometimes I am just overwhelmed with how amazing life is. How every inch of this universe and every breath we all take is filled with endless miracles and wonder. If only we took note of it all more often. If only I had soaked more of it up when I still had the freedom to dance.

The FDA/NIH CFS Paper Finally Published

2010-08-25T08:38:00.000-07:00

The long and eagerly awaited FDA/NIH study on CFS was finally published this past Monday. The study reports finding MLV-related viral sequences in 86.5% of ME/CFS patients, and only 6.8% of controls.

MLV stands for murine leukemia viruses. XMRV (xenotropic murine leukemia virus-related virus) is in the family of MLV's. While this study didn’t specifically find XMRV in patients or controls, the investigators are confident they are essentially looking at the same thing. As Dr. Harvey Alter explained to science reporter Mindy Kitei:

“Viruses tend not to be homogenous,” Alter explained to CFS Central in a telephone interview. “The fact that we didn’t find XMRV doesn’t bother me because we already knew that retroviruses tend to be variable. They mutate a lot, basically. This is true of HIV and HCV [hepatitis C virus]. It’s not one virus. It’s a family of viruses.” -- CFS Central

Alter also stated, "Our results clearly support the central argument by Lombardi et al. [the 2009 Science study], that MLV-related viruses are associated with CFS and are present in some blood donors."

I would love to write a brief, personal commentary on what I feel this may mean for us and for the future of ME/CFS research and treatment, or for those of us who DID test positive for XMRV... but I'm simply not well enough to do so right now. So, I'm going to share a bunch of links instead. :)

For the full paper, published in the Proceedings of the National Academy of Sciences (PNAS), click here.

For two excellent summaries and commentary on the paper, visit:

Mindy Kitei's CFS Central
and
Cort Johnson's Phoenix Rising

The CFIDS Association of America has also created a short pictorial essay to help patients understand the relationship between XMRV, MLV's and gammaretroviruses. For a more in-depth analysis, read Another Turn of the Retrovirus Kaleidoscope .

Below are just some of the many news articles on the subject (there are currently over 300) :

The New York Times
The Wall Street Journal (August 23, 2010 article)
The Wall Street Journal (August 24, 2010 article)
The Wall Street Journal (August 25, 2010 article)
CNN
The LA Times
Reuters
NPR
ProHealth

The 1st International Workshop on XMRV is scheduled to be held on September 7 and 8, 2010 in Bethesda, Maryland at the U.S. Department of Health & Human Services' National Institutes of Health (NIH). Reportedly, more findings will be presented at this meeting.

Here's hoping this study helps propel us forward towards a better understanding of this illness, increased awareness of its complex and severely debilitating nature, and that it finally leads us to effective treatments in the near future. It's most certainly long overdue.

Whittemore Peterson Institute: An Introduction

2010-08-22T13:37:00.000-07:00

The above video, created by Peter Cairns, was presented at the August 21, 2010 public opening of the Whittemore Peterson Institute (WPI). It describes the inspiration behind the WPI's creation, the amazing dedication of all its members, and the incredible progress and accomplishments it has already achieved. It also recognizes ME/CFS as a serious neuro-immune disease, and acknowledges the extreme devastation it can have on its patients.

Jim and I were contacted and asked (along with many others) if we'd like to contribute photos, and we were honored to participate.

The Whittemore Peterson Institute is a true new beacon of hope for millions of patients all around the globe. It seems new beginnings are finally ahead!

Hope

2010-08-17T14:53:00.000-07:00

While the official FDA/NIH study by Dr. Harvey Alter is still awaiting publication (it is at press and reportedly due out soon), I couldn't help but be excited to see this news article when I awoke this morning:

Findings by Reno Scientists Confirmed by U.S. Government

They are of course referring to the October 2009 Science study which found a new human retrovirus, XMRV, in 67% of ME/CFS patients.

Some of my favorite quotes in the above article:

“There has been an issue over whether anybody could replicate our study, and [the FDA/NIH study] will not only confirm our findings but extend our findings, which is really exciting for us,” [Mikovits] said. Mikovits said they also have new, unpublished data concerning the retrovirus, XMRV, that could lead to treatment of Chronic Fatigue Syndrome.

and

“We have immune system profiles and we can tell by the immune system how the XMRV is doing the damage,” she said. “So we could have a diagnostic test to follow clinical treatment and show that people’s immune systems go back to normal. That’s the latest data that’s really amazing. That’s what we’re after.”That data will be published by the end of the year, probably in a clinical immunology journal, she said.

and

Lombardi said clinical trials could begin soon at the Whittemore Peterson Institute, which is relocating from its tiny laboratory on the University of Nevada, Reno campus to the university’s newly opened Center for Molecular Medicine.

In addition, in an interview on Nevada Newsmakers, Andrea Whittemore (daughter of Annette and Harvey Whittemore, and the inspiration behind the Whittemore Peterson Institute) speaks briefly to the fact that she is receiving new treatment for her condition based on these findings, and is doing much better.

Could there really be a light now visible at the end of our tunnel?

photo from weheartit.com

Could it be that genuine hope has finally arrived, and is here to stay?

Wildlife Window

2010-08-15T08:39:00.000-07:00

I wanted to post something thoughtful and even (hopefully) somewhat meaningful, but it's been a rough few weeks and I'm just not feeling particularly insightful at the moment. Instead, at the risk of looking like the paparazzi of wildlife, I thought I'd share more photos of some recent window visitors.

While it may be rather obvious, I should probably first note that the pictures are not of the highest quality. My window is on the opposite wall of my bed (about 10+ feet away), so I have to try to zoom in through my window screen from afar, and I can't use a flash because it creates a reflection. Needless to say, while I did my best, it's highly unlikely I will be winning a Photographer of the Year award any time soon. :)

Anyway, as previously mentioned in another post, I have recently had a new rabbit living in my courtyard. She made quite a snug little place for herself right under my mesquite tree, and for awhile, she would sit out there for hours every day.

It was interesting to me how she, like me, spent much of her day doing nothing but essentially being still. The main difference (other than that she's healthy and a rabbit, and I'm sick and a human) is that she seemed rather content with everything. As far as I could tell, she was not ruminating about her purpose and the overall meaning of life, nor pondering the why's of what was and what could have been. Instead, she seemed perfectly content in her way of life, patient and quiet and watchful.

And then I realized there was a bit more to her story. One day, while looking out the window, I suddenly saw that the bunny was not alone, and there was a reason she was hanging out in one spot all day. She was keeping an eye on her two little kids, both of whom had apparently been safe in hiding all this time!

How cute are they? By the way, that's a lizard with the two bunnies in that last photo. He seemed to take a liking to them, and the three hung out together for several days.

It was fun to watch as the new babies (more like toddlers) explored their surroundings and became acquainted with each other. One seemed to be rather adventurous, bravely traveling far in his exciting explorations each day, while the other preferred to stay near home and close to his mother.

I haven't seen any of them in a week or two, so I think now that the kids are all grown up, everyone may have moved on to bigger and more exciting things. :)

There are quite a few gophers who climb the tree outside my window each day as well, looking for mesquite beans. Here are a couple photos of them perusing the branches for some food.

Living in Arizona, I often see a fair share of creepy, crawly lizards as well. I'm not quite as fond of them as I am of some of the others who roam outside, but they are still interesting to look at from a distance...

And of course, the tree and feeders still attract lots and lots of birds. My favorites are the cardinals and finches. I love how they brighten the desert with their joyful songs and vivid colors. Here is a yellow finch sitting on one of the mesquite tree branches, waiting patiently for his turn at the feeder.

But my most interesting visitor of late was one that actually took me a bit by surprise. I was laying here in bed (that's not the surprising part) listening to an audio-book when I suddenly heard a bit of a thud. It seemed some sort of flying animal had perched itself onto the screen of my window. It was hard to make out exactly what it was at first, as it was in a bit of an awkward position:

Contrary to what it looks like, that's not a giant bird hanging upside down from a tree branch. :) He's moving himself around on my window screen.

It wasn't until the bird settled himself and peeked in to look at me that I realized this was not an ordinary bird.

It was an elf owl!

Elf owls are named after their small size, often just 6 inches in length. They are the smallest owls in the world. They are also nocturnal, and typically nest in natural tree cavities or abandoned woodpecker holes of saguaro cacti. It is therefore very rare to ever see them in the daytime. In over a decade of living in the Southwest, this was my first glimpse of one. Not that I actually get out much, of course, but still. :) It was quite a treat.

We stared at each other for awhile, and I'm not sure who found the other more interesting.

After his curiosity was apparently satisfied, he decided to do a little dance (or, rather, completely freak out) before flying away.

Owl Freaks Out. Was it something I said?

I've also had another bird who seems to like to peak in on me every now and then. For two days straight he would fly to my window and seem to look inside, chirp at me, then fly away only to come back for another look a few seconds later. This actually went on for hours and hours. It was hard to get a photo of him as he moved around so fast, but here is one of the few I snapped as he was checking me out.

Peeping Tom

He still comes to check in on me about once a day. I'm flattered he cares so much. :)

Anyway, so there you have my most recent excitements in my very non-exciting world.

I'm hoping more excitement is soon on its way, this time in the form of a certain paper published in the Proceedings of the National Academy of Sciences. I could use some really good news.