My CFS/CFSAC Video Testimony

At the end of October, the CFS Advisory Committee will once again meet to provide advice and recommendations to the Secretary of Health (via the Assistant Secretary of Health and the U.S. Department of Health and Human Services) on what directions to take in terms of CFS research and strategic planning. 

It has long frustrated me that those who are the most severely afflicted with ME/CFS often go unheard. We are not represented at these meetings because we are too sick to attend them.  In hoping to tell my story and perhaps be a voice for the voiceless, I decided I would attempt to create a video testimony (with assistance) which could hopefully be presented along with the other in-person testimonies. I officially submitted the video a couple weeks ago, and am currently awaiting a response.

In the meantime, I've included a link to the video below.  A non-profit group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy) has also already featured the testimony on their youtube channel.

Since I am unable to speak above a whisper, my sister-in-law graciously agreed to do the voice over for me, so it is her voice that you hear in the video. I am extremely grateful to her for all her help!
 




Thanks for watching and for hearing my story.

*Update: I just got word my video testimony has been accepted, and will be viewed at the upcoming CFSAC meeting (along with other patient testimonies) on October 30th around 9:15 a.m.  I am very excited and happy to receive this news! The two day meeting will be videocast live, if anyone wants to watch it online. For more info, visit: http://www.hhs.gov/advcomcfs/

Much thanks to all who left me such kind comments and words of support!!

A Note on Lyme Disease

Something I have yet to really mention on this blog is my dual diagnosis of Lyme Disease (which came in 2004 -- eight years after becoming ill). This is in part because I've always struggled with how big a role Lyme is actually playing in my case, and on when, where, how or even if I really have it.

Testing for Lyme is complicated, confusing and not very reliable. False negatives are common. I was negative for Lyme with standard tests through regular labs, as are (from what I understand) most patients if tested years after the initial infection. I tested positive, however, through a specialty lab called Igenex. This in and of itself might leave some doubtful, as Igenex (with good reason) considers certain bands indicative of Lyme Disease that the CDC does not. But I was not just positive by Igenex standards; I was positive by CDC standards as well. Twice. I'm told this is quite a feat, as antibodies may no longer be present so late in the game, and the Lyme-causing bacteria (known as B. burgdorferi) are not always easily detectable. Apparently, they are a bit sneaky, and like to hide.

Given these results, and thus assuming that Lyme is a contributing factor in my case, how did I manage to contract it on top of viral-induced ME/CFS? Two possibilities come to mind. I did once have a tick bite as a child. I was about 11 years old, and found a tick on my back almost immediately after it bit me. It was not engorged. My mother removed it with tweezers, and that was pretty much the end of it. I never developed a rash or any other symptoms, so we didn't think much of it. Is it possible I contracted Lyme then but it remained latent all those years until I got mono, sending my immune system into havoc? Maybe, though I'm skeptical. I was quite vibrantly healthy up until that fateful day I fell sick, and there's no doubt that my illness had a clear and sudden viral onset.

However, for a few months previous to that onset (following a trip to Colorado), I remember feeling unusually tired quite a bit of the time -- almost like I was constantly fighting off a cold that never actually came to fruition. The fatigue was not anywhere near enough to interfere with my life at all, but it was enough for me to take slight notice. This makes me wonder if I may have somehow contracted Lyme during that trip, perhaps unknowingly getting a tick bite while hiking around a bit in the Rockies. Then, when I came down with mononucleosis a few months later, my immune system went berserk on me, ultimately resulting in ME/CFS.

I will never know for sure, I guess. Still, I feel ME/CFS to be my primary issue; not just because of the viral onset, but because I fit that picture so much better than the Lyme one. I don't tend to relate to Lyme patients as much as I do to those with ME/CFS. I don't have joint pain, tremors, numbness (other than from poor circulation) or all that much muscle pain unless I over-exert. Also, if I were to say what my most debilitating symptoms were beyond or even above the severe exhaustion, they would be orthostatic intolerance and post exertional setbacks (a worsening of all symptoms upon even the most minor of activity) -- the latter of which is considered to be the hallmark of ME/CFS. This is true of Lyme as well, of course, but it is something you see more distinctly and profoundly in ME/CFS, it seems.

It's also quite plausible that chronic Lyme is yet another form of ME/CFS; that is, if ME/CFS is caused by an infectious agent (viruses or bacteria), the bacteria that causes Lyme could be one of those possible triggers.

Of course, all that being said, assuming I do have Lyme, it is clearly complicating my case. I have tried a multitude of treatments for it, just as I have for ME/CFS: a growing list of antibiotics, mepron, herbs, diets, protocols, IV's, nutritional supplements and alternative/natural therapies. Thus far, nothing has worked.

So, what do I do after being diagnosed with two illnesses that are poorly understood and lacking in viable treatment options? The only thing I can: keep trying, keep searching, keep looking for answers, and keep hoping.

For a brief trailer on a newly released documentary on Lyme called Under Our Skin (now in theaters), check out the video below. It is a must-see.



*Note: For those who are more knowledgeable about Lyme than I am, please feel free to correct me if I got anything wrong. I am much more well researched in the area of ME/CFS than I am in Lyme Disease. :-)

For those looking for more info on Lyme, please see some of the websites linked on this page.

A Personal Lesson in Humility

The CFIDS Association of America recently took a poll in which, among other things, they asked their members what kind of personal stories they were most interested in hearing about. Not surprisingly, somewhere at the top of the list were stories from those who had recovered. People want to hear about what others did to get better. They want hope.

In that light, one can probably anticipate which stories were among those that generated the least amount of interest. Who did they not want to hear from?  People most severely afflicted with this illness. People who are bedridden. People like me.

Those of us fully homebound with this disease can feel so isolated and invisible. We often (quite literally, in my case) don't have a voice. No one wants to hear our story. Not even, it seems, many of our own fellow sufferers.

But really I shouldn’t have been taken aback by this. After all, when I was still working full time, I often came across stories like mine, and for the most part, I didn't want to hear them either. It was too scary and depressing. I refused to believe becoming homebound or bedridden was even a remote possibility for me, and didn’t want to let the idea of it needlessly enter into my mind.

In fact, when I first got sick, I remember I actively sought out only those who had fully recovered from CFS. Not those who had merely improved, but only those who had completely regained their health. I did this because I firmly believed that was the only possible outcome for me.

People who had fully recovered were difficult to find at the time, but I was not deterred by this. If even one person had been able to restore their health after battling this illness, then that meant I could (and would) as well.

But it didn’t quite turn out that way. Not yet, anyway.

If I could do it over again, I would have been much broader in how and from whom I sought advice and wisdom. I would go back and read the stories of those who had become bedridden, and I would listen to what they had to say. There’s a lot to be learned not just in hearing what people felt they did right, but also in hearing what people felt they did wrong. In many ways, I think I would have gained even more insight from the sickest of patients than from those who had gotten well, because their stories would have humbled me. I would have more fully realized what was at stake, and perhaps been better able to let go of the idea that I was invincible.

If I could speak as myself now to the highly determined young woman I was back then, this is what I might say:

First, don’t worry. If you listen to your body -- truly listen to it -- then it’s extremely unlikely you will end up anywhere near where I am now. Second, treat your body like the temple that it is. Eat healthy, meditate, stay only as active as your body allows, and rest when your body tells you to rest. Never put a job, other’s opinions or anything else above your own health. Similarly, don’t let your ego, your pride, your need to please or your desire to accomplish get in the way of doing what your body tells you to do. Letting my ego, my ambition and my need to please others take priority over my own failing health was, I think, my gravest mistake. It is something I still struggle with on a daily basis even today.

Now this isn’t in any way to say that it’s not possible to recover from CFS. While full recovery is  rare, it is most certainly possible. Nor do I mean to imply one needs to let go of ambitions or stop trying to achieve in any way. Far from it. I certainly have not let go of any of my life-long goals and, given my health, I overcome more obstacles now in one day, comparatively speaking, than I did in a full 40-hour work week. It is only to say I wish I’d learned earlier that, contrary to what I’d previously believed, the course that any given illness takes is not solely measured by the strength of your spirit, optimism or determination. If only it had been that easy. It’s about balance. Balance, pacing, and listening.

Of course, finding appropriate treatments (should they someday exist) would be of tremendous benefit as well. 

In the end, I think the most important thing for all of us, no matter what level we are at, is to stay positive, trust that things will get better, and that the answers will soon come. And, without a doubt, to never let go of hope.

My story

I remember the exact moment I first became ill. It was December 31st, 1996 around three o'clock in the afternoon. I was walking down the hallway of my cheerful, two-bedroom apartment, about to shower and get ready to go out with friends so we could celebrate the new year.  As I got about halfway down the hall, I quite literally and suddenly felt like I had been hit with a ton of bricks. I remember stopping in my tracks as I leaned my hand against the wall to hold myself up. "What is happening?" I murmured out loud, astounded by how abruptly ill I felt.

Dizzy, I made a beeline to the living room so that I could lie down on the couch and rest, hoping somehow that would be enough to make whatever this was go away. What bad timing, I thought, to have apparently come down with the flu on New Year's Eve. I turned on the TV in an attempt to distract myself from how sick I felt, but the images on the screen seemed so dizzying that I could barely tolerate two minutes of it. I had to turn it off.

My roommate walked in and I told her I thought I might have the flu. I didn't think I'd be able to go out that night. As I said the words, I distinctly remember thinking (and perhaps intuitively knowing) this was something much more significant than your average virus.

However, not one to be deterred by a silly bug (I virtually never called in sick to work), it didn't take much for my roommate to convince me to go out anyway. I told myself I'd feel better after I showered. I didn't.

We took the city bus to a club in Boston where we were to meet up with friends. As I sat in my seat, eyes closed from lights that felt too bright, I remember everyone's voices seemed simultaneously too loud and yet somehow distant and muffled, as though we were all mysteriously traveling underwater. I felt myself sweating from fever, though it was below freezing outside. My temperature that night, I later learned, was well over 104.

I honestly am not sure how I got through the evening, except to continuously tell myself all would be better in a few days. I remember laughing and drinking and even dancing on the dance floor. With the exception of my roommate, my friends remained clueless to the fact that I felt even remotely unwell. As midnight approached, I counted down the seconds with a room full of people as we all shouted out loud: "Ten... nine... eight..." Little did I know at the time that I was not just counting down the last few moments of 1996, but the last few moments of my life as I had known it.

The next morning, I woke up in a pool of sweat with swollen glands and a terrible cough. I got out of bed and clung to the walls as I made my way to the shower. Moments after turning the water on, I collapsed and fell to my knees with dizzying exhaustion. Something was dreadfully wrong. I fumbled my way back to bed and called my doctor.

Two days later, the nurse phoned to tell me that I had mononucleosis. I would need to stay home for at least two weeks, she said. "Two weeks?" I replied in dismay, “I’m going to feel like this for at least two whole weeks?" In actuality, it’s now been 13 years, and I am regretfully still counting.

When months went by and I did not seem to fully recover, I went through a myriad of tests and skeptical doctors before (two years later) I had an official diagnosis: CFS. I remember the first time a doctor suggested it to me. “You might have chronic fatigue syndrome,” he said. “Some people develop that after severe cases of mononucleosis.” The funny thing was, I didn’t realize at the time that he was actually diagnosing me with anything. I thought he was just telling me what I already knew: that, following mono, I had become chronically ill and exhausted. It wasn’t until another doctor brought it up again that I realized that was actually a name for an illness. “I feel way too sick to have something called chronic fatigue syndrome,” I told her.

But, as it turns out, as ridiculous as the name is, CFS is a real and devastating disease.  Its original name (used in the U.K and some other countries) is myalgic encephalomyelitis (ME).  ME is currently classified under the World Health Organization as a neurological disease, though it also affects the immune, endocrine and other organ systems. The CDC recently acknowledged ME/CFS as a real and serious illness that can be as debilitating as multiple sclerosis, late stage AIDS, chemotherapy treatment, COPD and end stage renal failure. It has been estimated that ME/CFS afflicts at least one million people in the U.S.

Yet, despite this, ME/CFS is still one of the least funded of all illnesses in the United States. More money is spent studying hay fever every year than on ME/CFS.

Due to such limited funding and research, to date there are very few treatment options currently available (none FDA approved), and much of what is available is primarily trial and error. I have spent my entire life savings on various treatments to try to get well. Thus far, not one has worked, and many made me worse.

I have always been a very determined person, often to a fault. I went back to work the very morning I woke with my temperature just barely below 100 degrees (three weeks after the original onset), though I otherwise was not much improved. Clearly, it was too soon. Within a month, my 104 fever had returned and I was unable to work for another three weeks.

Following that setback, I was able to push myself to continue working full time for the next few years; however, it was not without great difficulty. I often had to rest in my car during my lunch hour, and went straight to bed upon getting home. I was running my body to the ground and, though I knew this, I did it anyway. I was of the mind-set that I could push through anything and that, with enough determination, I would eventually overcome.

Not so. I learned the hard way (and I am still learning) that ME/CFS does not reward that kind of forced perseverance. After years of pushing my body beyond its capacity, I had a setback (known in the ME/CFS community as a “crash”) so severe I ended up housebound and had to quit my job. Not long after that, I had a crash that left me bedridden and unable to speak above a whisper. That was nine years ago. I have spent what were supposed to be the most vital years of my life sick, barely able to speak and confined to my bedroom.

As with many of those stricken with this illness, I was previously a fully healthy, energetic, ambitious and well-educated young woman. I graduated magna cum laude with a B.S. in psychology from Tufts University. I worked in human resources, first at an internationally known publishing company in Boston, then at a state university. I traveled extensively in my youth, including a year abroad in London, during which time I back-packed through Europe for a month at spring break. After college, my friend and I spent nearly two months driving 6,000 miles across the United States.

I love to travel. I love to learn. I love to draw and read and spend time with friends and family. I love photography and the outdoors. I love to dance. It's not that I no longer want to do these things. It’s that I can't.

Despite my situation and isolation, I was fortunate several years ago to have found a friend and companion who can relate to my struggles and who brings me hope and laughter every day. We met online, and we write daily. His friendship and sense of humor are my strength. He, too, has a severe case of ME/CFS, and is wheelchair bound. And he, too, became ill at a young age after a severe case of mononucleosis. He has been ill for nearly 25 years now.

Somewhere in the midst of writing each other for over five years, we became best friends and fell in love. He’s the most extraordinary person I know. Last spring, he found the strength to fly out to surprise me and propose, and I enthusiastically said yes. We are now thrilled to be engaged and can’t wait to be well enough to get married someday. We dream of having children and raising a family. We dream of successful careers, volunteer work, travel, adventure and all the things we’ve so longed to do. A former athlete in high school and college, my fiancé dreams of one day being able to run again. He has a PhD in mechanical engineering from Carnegie Mellon and might like to teach someday.

I hope to someday get my master's in speech pathology and work with deaf or special needs children. I also have aspirations of perhaps starting my own business.

I dream of the little things, too. I dream of someday being able to walk down the hallway or outside to stroll in the yard. I dream of being able to take a bath or a long, hot shower instead of a sponge bath. I dream of being self reliant and not relying on others for basic care. I dream of being able to call and spend time with my friends and family, and of the ability to speak for hours about their daily goings-on as we catch up on so many years lost. I dream of being able to play with my niece and nephew instead of being limited to letters to communicate. I dream of holidays spent with loved ones instead of all alone, as I am currently unable to travel and my health cannot handle many visitors. I dream of walking, and running and dancing. Most of all, I dream of the vibrant, glorious feeling of good health, and I strive for it every day.

Meanwhile, I remain forced to watch through my bedroom window as time slips by. The battle goes on.

I share all this with you today so that you can help spread the word that more needs to be done. More needs to be done to raise money for research so that treatment options or even a cure may be found. More needs to be done to help raise awareness and understanding so that those with ME/CFS are not made to feel shamed for being ill on top of all else that they go through. More needs to be done to educate doctors so that patients are not so easily dismissed or mistreated. And more needs to be done to change the name to one that doesn't trivialize the condition, and doesn't merely focus on just one of the many different symptoms associated with the disease. The word “fatigue” doesn’t come even remotely close to describing what we experience. We are sick, not tired.

Above all, more needs to be done so that those of us stricken with the disease can have our lives back.