New Research Brings Hope

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

However, thanks to a new study out last week by the University of California's San Diego School of Medicine, we may finally be closer to an answer.  And while their findings don't yet explain everything, they do potentially explain a lot. Indeed, it is quite remarkable when the very words you've used to describe what this illness feels like -- a near total body shutdown -- is revealed by science to be what may actually be happening on a cellular level.

Dr. Robert Naviaux's metabolomic study shows that cells of ME/CFS patients appear to be in what's called a hypometabolic (or dauer) state --  analogous to a kind of protective hibernation -- in response to an infection, toxin or other threat.

Dr. Naviaux explains:

 "Despite the heterogeneity of CFS,* the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients.  And interestingly, it’s chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death.

In the case of CFS, when the CDR [cell danger response] gets stuck, or is unable to overcome a danger, a second step kicks in that involves a kind of siege metabolism that further diverts resources away from mitochondria and sequesters or jettisons key metabolites and cofactors to make them unavailable to an invading pathogen, or acts to sequester toxins to limit systemic exposure. This has the effect of further consolidating the hypometabolic state. "

Eighty percent of the diagnostic metabolites measured were decreased in ME/CFS patients, creating a type of metabolic signature that allowed for an accurate differentiation between patients and healthy controls. In fact, Naviaux's diagnostic accuracy rate, based on these results, exceeded ninety percent.

Dr. Naviaux goes on to say:

"CFS is an objective metabolic disorder that affects mitochondrial energy metabolism, immune function, GI function, the microbiome, the autonomic nervous system, neuroendocrine, and other  brain functions. These 7 systems are all connected in a network that is in constant communication. While it is true that you cannot change one of these 7 systems without producing compensatory changes in the others, it is the language of chemistry and metabolism that interconnects them all."

While Naviaux's study will need to be replicated, other scientists are already finding similar results.  For example, earlier this summer, an ME/CFS study out of Australia  found irregularities in energy metabolism as well as amino acid, nucleotide, nitrogen, hormone and oxidative stress metabolism. They state that "the overwhelming body of evidence suggests an oxidative environment with the minimal utilization of mitochondria for efficient energy production."

More recently, in a webinar held by the Solve ME/CFS Initiative, Dr. Maureen Hanson of Cornell University mentioned similar metabolomic findings in a study that is currently awaiting publication.
 
Dr. Ron Davis of Stanford University and the Open Medicine Foundation is conducting the first comprehensive study ever done on severe ME/CFS patients, and has also already found similar disruptions in metobolomic pathways in his preliminary data, which he reported on at the Invest in ME 2016 Conference.  Davis has a son, Whitney, who is severely afflicted with this disease.  Whitney is completely bedridden and must be tube-fed.  He is unable to speak or tolerate any kind of touch or interaction. 

In Cort Johnson's excellent summary of Naviaux's study, he notes Dr. Ron Davis' observation that:

 "In other diseases, the kind of disability seen in the most severely ill ME/CFS patients is a prelude to death. Once people get THAT sick they’re usually going to die; a process has been started that’s going to result in death.  But that generally doesn’t happen in ME/CFS. People can remain functionally in what appears to be a near death state for a long time. That could suggest a way has been found to keep the body alive in a very low energy state."

Collectively, these findings could lead to a better understanding of what may turn out to be a central mechanism involved in this illness, and could also open the door to the first possible diagnostic test for ME/CFS.

Most importantly, this discovery may lead to new avenues for potential treatment in the near future.  While it's unclear yet what that treatment may be, Naviaux appears optimistic.  He states, "...metabolomics reveals a new window into the underlying biology of CFS that makes us very hopeful that effective treatments will be developed soon and tested in well-controlled clinical trials."

In simple terms, for millions of patients with ME/CFS who have been awaiting answers for far too long, this new study brings much needed hope.

Photo by Getty Images

Sources/Further reading:

• Full ME/CFS Metabolomics Study Publication
• Q and A Session with Dr. Naviaux 
• From ME Action: Naviaux's Metabolomic Study is About as Big as You Think
• From Health Rising: The Core Problem in Chronic Fatigue Syndrome Identified? Naviaux's Metablomics Study Breaks Fresh Ground

*Patients in Naviaux's study met ME/CFS Canadian Consensus Criteria  (in addition to IOM and Fukuda criteria).

Finding Presence Despite Absence

I recently listened to the audio version of Elisabeth Tova Bailey's The Sound of a Wild Snail Eating -- a beautiful, poignant and reflective book about surviving a debilitating illness while finding beauty and wonder in an object of nature and in quiet observation.


Bailey was an active 34-year-old woman when she was struck down with a mysterious, flu-like illness from which she never fully recovered. Suddenly bedridden and isolated from the outside world, she found solace in a rather unexpected companion: a wild snail in a pot of violets given to her by a friend. The snail was moved to a terrarium filled with woodland plants, and as Bailey began to observe, research and care for this enigmatic creature, she found parallels to her own life. She writes:

“..the snail had emerged from its shell into the alien territory of my room, with no clue as to where it was or how it had arrived; the lack of vegetation and the desert-like surroundings must have seemed strange. The snail and I were both living in altered landscapes not of our choosing; I figured we shared a sense of loss and displacement."

The snail became a source of wonder and fascination to Bailey, and as her illness forced her deeper into a secluded confinement, she found comfort in this unusual bedside companion.

 “Illness isolates; the isolated become invisible; the invisible become forgotten. But the snail... the snail kept my spirit from evaporating.

...Watching it glide along was a welcome distraction and provided a sort of meditation; my often frantic and frustrated thoughts would gradually settle down to match its calm, smooth pace. “ 

There was so much about Bailey's story and writing that, for obvious reasons, deeply resonated with me.  I saw myself in the descriptions of the onset of her sudden illness, the isolation that the severity of her affliction thrust upon her, and the sense of peace she found in observing an object of nature.  For Bailey, it was a snail;  for me, it is the trees, the wildlife and the cactus blooms that comfort me outside my bedroom window each day.

Something else that struck a particular chord with me was Bailey's notation of her glaring absence from the world she once knew.  She writes, "From the severe onset of my illness and through its innumerable relapses, my place in the world has been documented more by my absence than by my presence."

This sense of absence is something I've grown more acutely aware of in recent years.  I've always been conscious of it on some level, of course, but it seems to stand out to me more and more as the years pass and I watch time and the lives of others slip by without my presence.
 
The degree of isolation that is brought upon those who suffer with this disease, especially in its severest form, is at times rather shocking.  These patients are isolated not only from the outside world, but often also within the confines of their own home. Some must live in total darkness and silence virtually 24 hours a day, unable to tolerate even the slightest hint of light or sound. As a result, they are also unable to fully interact with the very people who live with and provide them with care.

In my own case, I currently reside with my parents; yet, I rarely see them for more than about an hour scattered in small moments throughout each day. Due to severe difficulties with speaking above a whisper, as well as the problems I face with sensory overload, I find that more than a few minutes of interaction can be incredibly taxing. I struggle with the influx of information (both visual and auditory), keeping my eyes focused on whoever is speaking, quickly finding the right words to say in response, and then getting those few words out clearly enough to be heard.  Sometimes, if my reply is more than I can say out loud, I have to write it down on a piece of paper instead. Thus, even minimal interaction can be deeply draining and, if it goes on too long, has the potential of causing a setback that can last for weeks or even months.

It's difficult to see how much my parents (my mother, in particular) must do for me on a regular basis, and yet, I cannot really give them anything in return.  They are each in their mid-70s now, and I worry about the fact that, were they to become ill themselves, I could not be there for them in any kind of real, tangible way.  It's something I do not let myself think about often. For now, I'm ever grateful they are each still in my life, and that they are both healthy and strong.

Of course, my limits in interaction are not discriminatory; they apply to anyone who comes into my room.  When my brother and his family visit for a week each spring, I barely get to see them beyond giving everyone a hug each morning, exchanging a few words about what they've been up to, telling them that I love them, and perhaps taking a few pictures of us all together on their last day. While I cherish each and every one of these moments, I long to participate as they go on their daily sight-seeing adventures, or simply to hang out with my niece and nephew in my bed and play games or listen to all of their many stories.  Sometimes, instead, I will listen to them from afar, my eyes closed, as they play or chat in another room.  

Friends, too, have inevitably been distanced as a result of my illness. In fact, it's been 14 years since I've seen virtually anyone outside of family, helpers and a few doctors.  The only real exception is my best friend from college.  We studied a semester abroad together, backpacked through Europe and spent two months after college traveling throughout the U.S.   She is like a sister to me and, prior to my becoming ill, we used to speak on an almost daily basis.   Now I see her for a few minutes once a year when she comes to AZ with her family for Christmas. She and her children give me hugs and gifts, tell me of their latest news and, sometimes, her daughters will sing a song or two for me. Her husband often simply greets and waves to me from the hallway.  Regretfully, that's the extent of her visit each year, as it is the most that my health can withstand.

My own fiance and I have not seen each other since his proposal in 2008, as we are both now far too sick to travel such distances (Jim lives about 2,000 miles away).  We still write every single day, often several times a day, and not a moment goes by where I don't feel infinitely grateful for his presence in my life.  But I miss him terribly and wish so much that I could see him again.

As someone who used to be highly social and active prior to getting ill, these challenges in communicating with and being present to those I love are unbelievably frustrating and, at times, heartbreaking to me.  There's been an immeasurable amount of lost time, and of irretrievable moments never fully experienced.   I've missed out on countless milestone birthdays, weddings, anniversaries, holidays, parties, recitals, plays, concerts and even just the daily everyday type of things like casual dinners, going to the movies and chatting for hours on the phone. As much as we all work around my circumstances as best we can, I'm simply not able to be an active participant in the lives of my friends and family in the way that I so yearn. 

Fortunately, the rise of social media in recent years has helped a bit in reestablishing my connection to the outside world.  Facebook, for example, has allowed me to reunite with many friends I had not seen or spoken to in years.  Though I am unable to spend much time online, I can generally check my newsfeed for a few moments each morning, where I get to see lots of photos of all the many faces I miss, and hear about everyone's daily activities and adventures --  without having to write long emails, which can also be quite difficult for me.  

In addition, I've been able to meet new people I'd otherwise never have met, and some of these new friends have become very dear to me over the years.  It's been wonderful to have this outlet, and I am so grateful to now have that kind of connection.

At the same time, seeing and hearing about everyone's exciting lives on a day-to-day basis can also be a stark reminder of just how much I am missing out on, and of how absent I really am from each of my many friends' lives.

Despite my circumstances, however, I cannot truly say that I am lonely.  Distanced as I may be, I still have the love and support of dear friends and family, some of whom do their utmost to care for and include me in their lives on a regular basis.  My absence is felt on their end as well as on mine, and I am reminded often that I have not been forgotten.

Most especially, I have the love and support of my fiance who, every day, affirms how important I am in his life, as he is in mine.  It is that love which holds me up and carries me through.

I also know that, unfortunately, there are many others like me out there, fighting this disease in their own forced isolation every single day, and we are each united in our shared stories.  
   
Finally, much like Elisabeth Tova Bailey's wild snail, I have the wildlife, blooms and butterflies outside my window.  They remind me that there is a kind of beauty and simplicity in merely existing and being open to each moment.    

And, in this moment, my presence in this world -- though slowed, distant and contrary to my wishes --  has not been fully silenced.  It makes itself known through the words I write, through small gestures, through memories and through the hearts of the people I love.  In this way, it battles on and continues forward. And it will never cease striving for its long-awaited moment of release.

 Meanwhile, from my window, a little bit of grace:

Female Lesser Goldfinch

Male House Finch

Female House Finch at Sunset

Female House Finch

Antelope Squirrel Waves Hello for a Picture

Baby Bunny

Roadrunner

Desert Cardinal (Pyrrhuloxia)

Coopers Hawk

Deer

Mourning Doves in Love

Mourning Doves Kiss

Gila Woodpecker

Gila Woodpecker and Saguaro Cactus Blooms

Bee and Saguaro Cactus Bloom

Bee and Saguaro Cactus Bloom

Staghorn Cactus Buds

Cactus Bloom

Prickly Pear Cactus Blooms

Amaryllis after Rain

Orchids

"Survival often depends on a specific focus: A relationship, a belief, or a hope balanced on the edge of possibility. Or something more ephemeral: the way the sun passes through the hard seemingly impenetrable glass of a window and warms the blanket, or how the wind, invisible but for its wake, is so loud one can hear it through the insulated walls of a house."
 ― Elisabeth Tova Bailey, The Sound of A Wild Snail Eating

"Wherever you are, be there totally." 
 ― Eckhart Tolle

Help Fund Research for Awareness Day

May 12th is myalgic encephalomyellitis (ME) awareness day.  ME is a very serious and complex neuro-immune disease which afflicts as many as 17 million people world-wide.  

One way to raise awareness is to help fund research that could lead to a definitive biomarker and a better understanding of the disease, as well as to potential treatments or even a cure.   If you are able, please consider donating to the Open Medicine Foundation's End ME/CFS Project, which aims to conduct the first comprehensive study on those like me who are severely afflicted with the disease and are bedridden and/or housebound.  It has been estimated that we comprise about 25% of the patient population, and yet, we have never been fully studied as a whole.  This new study is therefore very important in terms of understanding the disease and finding answers that could lead to treatment. 

The  Open Medicine Foundation (OMF) states: 

"As part of our End ME/CFS Project, this study will conduct a comprehensive, “Big Data,” analysis on severely ill ME/CFS patients with the goal of finding sensitive  and distinctive molecular biomarker(s). The molecular biomarkers that reflect the symptom mechanism are expected to be strongest in the approximately 25% of ME/CFS patients who have a severe form of the disease and are home-bound or bedbound.

...In addition to increasing the accuracy of diagnosing ME/CFS, a distinctive biomarker that correlates with symptom severity could reveal the disease structure or mechanism."  

The OMF's End ME/CFS Project donation page can be found by clicking the image below:

Another noteworthy fund raising effort has been set up by Tom Whittingham, brother of severely afflicted ME patient and advocate Naomi Whittingham.  Tom has created a beautiful and powerful video (posted below) to help raise awareness about ME, and to appeal for more research funding.  He will be running in the Edinburgh marathon to raise money for ME Research UK.    Please watch and share his video widely.   To visit Tom's JustGiving donation page, click here.



 
Even if you are unable to donate, you can still help!   Please consider signing this important petition asking that the NIH increase funding for ME and CFS research.  Despite the disease's severity and high prevalence, as well as an estimated economic burden of $20 billion per year, ME/CFS remains among the least funded of all illnesses in the U.S.   The NIH spends only 5 to 6 million dollars each year on the disease, and that amount is estimated to remain the same through 2016.  More money is actually spent studying hay fever each year. Increased funding means more research, more answers, and the possibility of finding a treatment or even a cure.   It will only take a second of your time to sign.    Thank you!

NOTE: An additional, similar petition has just been created by ME Action and can be found here.

Some Resources for Those who are Bedridden

Years ago, when I first became housebound (and eventually bedridden) with ME, I had very few places to turn.  I was living alone at the time, and while I had some friends and family nearby who were willing to help, my sense of pride prevented me from asking for the wide range of assistance I suddenly needed.  Overnight, I had gone from working full-time to being unable to grocery shop, do my own laundry, clean, cook or otherwise care for myself.  Doctors did not have answers for me, and the ordeal of getting out to appointments in and of itself would often set me back further.

Desperate for help, I contacted various agencies and organizations looking for assistance. However, more often than not, I was turned away.  Unless I required hospice care or had a lot of money to spare, few had anything to offer me.  Indeed, I have been continuously surprised by the scarcity of resources there are for those who are chronically housebound and/or bedridden.  These lack of services became even more evident to me once I began blogging. Unfortunately, I have received numerous emails over the years from other bedridden patients who have been unsuccessful in seeking the same kind of help that I, too, have had such difficulty finding.
     
In light of that, I thought I'd share a few services I've come across in the hopes it may provide some benefit to those who need it.  Please realize that, unless otherwise noted, these are agencies and resources I've found simply by doing a basic web search over time. I am not affiliated with any of these companies or websites, nor do I know anything about the quality of service or expertise they offer.  It's important for anyone to do their own research about an organization when seeking out professional help.

First, there are some services that are provided by Medicare and Medicaid for those who qualify.  For a comprehensive list of what Medicare offers in home health care services, please check out their Medicare and Home Health Care brochure.

Regretfully, many of the services Medicare does NOT offer are those that bedridden/housebound ME patients often desperately need -- particularly those who cannot rely solely on friends and family, or who spend much of their days alone.  These exclusions (if they are the only assistance you need) include personal care given by home health aides (such as bathing and dressing), meal delivery and homemaker services like shopping, cleaning and laundry.

From what I understand, should you qualify, Medicaid offers more services than Medicare.  These services tend to vary by state. For more information, check your state's Medicaid program, or visit http://www.cms.gov/home/medicaid.asp

Fortunately, there are many in-home health care agencies around the country that will provide cleaning, shopping, meal preparation and some degree of medical care, but at a fee. For those who can afford it, a quick online search can provide information on home health care in your area.  Nurse visits can also often be arranged through these agencies; however, generally speaking, doctor visits can not.  Most agencies will instead provide transportation to a doctor's appointment for those who are able (free transportation services are also often available to those who qualify).  However, for many with severe ME, a trip to the doctor's office, even with assistance, is not always possible due to the severe (and sometimes permanent) setback such an outing can cause.

In the last many years, there seems to be a growing number of organizations throughout the country that are beginning to offer physician services in the home. One such organization is the  Visiting Physicians Association.  Also, the American Academy of Homecare Medicine  offers a list of doctors by state who, as a public service, also make house calls.

Please again note that I am offering this information as a resource only and have no other knowledge about these agencies beyond what is listed on their website. Also, keep in mind that while these doctors make house calls, they may not (and, in most cases, probably do not) have extensive or even basic knowledge about ME.  Regretably, it is very difficult to find a doctor well-informed about the complexities of this disease, particularly in its severest form.  It is even harder to find one who is also willing to make house calls.

For those who may not be aware, Dr. Charles Lapp, an M.D. in North Carolina, recently put a call out to severely ill/bedridden ME patients. Right now it appears he is merely collecting the information, with possible hopes of  trying to find ways to provide care to these patients in the future.  For more information about contacting Dr. Lapp, please see here.  If nothing else, it's important for doctors to realize how many of us are out there looking for help. 

Specialty doctors for basic dental or eye care at home can also be extremely difficult to find. However, there are some dentists and optometrists who will offer limited care in the home for those who are bedridden. You can contact your state's dental or other specialty organization to ask if they are aware of any doctors in your area who make housecalls. For example, with some persistence, I recently found an optometrist willing to come to my home by emailing my state's optometry association.  A couple years ago, through the help of a local acquaintance, I also found a dentist in my area who routinely makes house calls,  which turned out to be a true life-saver for me.  I would never have survived such an extensive outing to fix all the issues I was having.

Many cities also provide mobile services for ultrasounds, EKGs and X-rays (with restrictions), provided you have a doctor who will order the tests for you.

Please note, however, that many of these doctors and services do not accept insurance, or insurance will not pay because the services are provided in the home.  This of course means that, unfortunately, these options might not be feasible for most patients.

I've also received many emails over the years asking how I avoid bed sores, or what kind of products I use to ease my comfort or accomplish certain tasks throughout the day. I am fortunate that I am well enough to sit up and turn myself in bed, and can still get up to use the bathroom on my own each day (the latter with the help of my wheelchair).   As of yet, bed sores have not been an issue for me. However, there are products available to those who find this a concern, as well as other products designed to make life a bit easier for the bedridden. AllegroMedical is one site where you can purchase such items, but there are many other websites available as well.

Those who have read one of my former blog entries, Eyes Wide Shut, know that, as a result of cognitive problems stemming from ME, I rely on a text-to-speech program to help me navigate online and to read all my emails and other items for me.  There are also several speech-to-text programs available for those who would find that helpful.  I don't have an iPod or iPad, but I know some versions have a voice application called Siri that could be useful to some patients.

I also participate in my local library's Books-By-Mail program, which is a free service that lends audio and large print books by postal mail to the visually impaired and disabled.  Many libraries have similar programs.

In addition to all the above, Emily Collingridge wrote an excellent book called Severe ME/CFS: A Guide to Living.  It is designed specifically to help provide a wide range of  resources to those with severe ME and/or CFS (geared towards the UK, but useful for all).  Her book can be purchased through her website (http://www.severeme.info/).  

Lastly, this illness, especially in its severest form, is incredibly isolating. I have received many emails requesting information on how to meet and communicate with other bedridden patients.  This is difficult for many reasons, but primarily because most bedridden patients are too sick to be online for any length of time, and thus cannot fully participate on social media or other similar forums.  However, for those who are able, sites such as Phoenix Rising,  HealClick, ME/CFS Forums and Facebook social groups like Severe ME Chat and Support. might be useful and provide some comfort.

Perhaps the most helpful piece of information for those bedridden with ME  is simply knowing you are not alone.  Here is a list of just a few blogs and websites written by or devoted to those with severe ME (more links can be found to the right of this page):

• A Rainbow at Night: Resources for Severe ME
• Behind the Surface
• Cheering from the Sidelines
• Dead Men Don't Snore
• Documenting ME
• JK Rowbory
• Heaven in My Foot 
• Living with CFS
• No Poster Girl 
• Rag and Bone Shop of the Heart
• Severe ME/CFS: A Guide to Living
• Slightly Alive
• Stonebird: The experience of Severe ME
• The 25% Group
• The Corner Room
• Through Closed Curtains 
• Turning Straw Into Gold
• Voices from the Shadows: Movie Trailer  

*More blogs have since been added to the above list after others brought them to my attention.
Also, Lily Silver's excellent blog, How to Get On, is an excellent resource for anyone on disability. It covers such topics as Medicaid, Medicare, affordable housing, home-care, medial equipment, etc. You can find the blog at: https://howtogeton.wordpress.com/

"Just knowing you're not alone is often enough to kindle hope amid tragic circumstances."
― Richelle E. Goodrich
~~~

If others have additional resources to offer on any of the above, please share them through the comments section below. My research abilities are restricted due to my physical limitations, so I'm certain there are things I have left out.  Also, the resources listed in this post are specific to the U.S. since that is where I live.  No doubt resources in other countries will differ.  Thanks for understanding!

In Memory of Emily

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 was stricken with ME at the age of six (and had been 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 managed 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 that 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 had to die. 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 sympathies to Emily's family and friends. She will be missed by so many.

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

• Severe ME: A Guide to Living
• Indigo Jo: Emily's Appeal
• Indigo Jo: Emily Rose Collingridge: 1981-2012
• ME Association: Emily Collingride: Such a Short Life, Such a Huge Legacy
• 4Walls and A View: The Disconnect Between Rhetoric and Reality in Myalgic Encephalomyelitis

Testimony: A Glimpse into Severe ME/CFS

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, leaving her unable to tolerate light or sound 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.


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 following a prolonged hospital stay. My thoughts and deepest condolences to her friends and family.
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To read this testimony translated into German (thanks to Nina!), click here.
To read this testimony translated into Dutch (thanks to Zuiderzon!) click here.