May 12th: ME/CFS Awareness Day

Photo from http://www.rescindinc.org/

 This post was updated September 2012

May 12th is International ME/CFS Awareness Day. Unless you have or know someone with ME/CFS, you probably wouldn't know that. And even if you did know, you probably won't read about it in any newspaper, nor hear about it on any media outlet. Like many ME/CFS patients themselves, this day tends to go by unmentioned, unnoticed, unheard.

So, in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:

1. ME stands for myalgic encephalomyelitis -- a complex, multi-systemic illness affecting the immune,  endocrine, cardiovascular, autonomic and central nervous systems.  It is classified by the World Health Organization (WHO) as a neurological disease.

Unfortunately, ME is also often referred to as chronic fatigue syndrome (CFS), a highly trivial-sounding name given to the disease by the Centers for Disease Control (CDC) after one of the largest U.S. outbreaks of the illness in Incline Village, NV in the 1980s.  It is now often abbreviated ME/CFS.

2.In order to be diagnosed with CFS in the U.S., you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50% as well as at least four of the following symptoms: post-exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory problems/difficulty concentrating.  These symptoms must be present for six months or longer.  This set of diagnostic criteria for CFS is referred to as the 1994 CDC Fukuda definition of CFS.

Many patients also suffer from severe neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, shortness of breath, chest pain and many other symptoms.

In 2011, a new international definition of M.E., the International Consensus Criteria, was established by doctors and specialists from around the globe and published in the Journal of Internal Medicine. It is yet to be known if/when the CDC will officially adopt it.

3. Studies have shown ME/CFS can be as or more debilitating than multiple sclerosis, lupus, COPD, heart failure, late-stage AIDS and end-stage renal failure.

Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was recently quoted as saying:

"I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

4. ME/CFS afflicts both genders and all age groups, including young children. Approximately one million Americans have ME/CFS. That's more than the prevalence of breast cancer, AIDS, or lung cancer combined.  Additionally, at least 17 million people suffer from ME/CFS world-wide.

5. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are bedridden or completely homebound.

6. ME/CFS often has a viral and sudden onset. Many viruses have been linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial infections have also been associated with the disease, including mycoplasma, Q Fever and Lyme disease.


7. There are well over 5,000 published studies showing possible physical biomarkers in ME/CFS. Some known abnormalities include: low natural killer cell activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, mitochondrial damage, orthostatic intolerance, low blood volume, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, oxygen toxicity/cellular hypoxia,  left ventricular dysfunction in the heart  and delayed V02 max (oxygen utilization) following exertion.

8. A February 2011 PLoS ONE study showed that people with CFS have unique cerebrospinal fluid proteins found only in CFS and not in healthy controls.  The proteins in CFS also can be differentiated from those with Lyme disease.  As an example, the study states that "the CDK5 signaling pathway was found to be significantly enriched for proteins identified only in the pooled CFS proteome. This signaling pathway has been linked to Parkinson's and Alzheimer's diseases."

9.  In October 2011, a groundbreaking Norwegian study was published showing 2/3rds of ME/CFS patients experienced significant improvement in symptoms using a chemotherapy drug called Rituximab.  Rituximab "destroys both normal and malignant B cells that have CD20 on their surfaces, and is therefore used to treat diseases which are characterized by having too many B cells, overactive B cells or dysfunctional B cells." The fact that this drug appears to work in ME/CFS suggests that the illness may be a type of auto immune disease. For more information, check out this excellent summary.

10. ME/CFS is thought to cost the U.S. economy about $25 billion a year, and perhaps more. The average cost per family of a ME/CFS patient is approximately $25,000 per year (including unemployment). Yet, despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in the United States (in the bottom 12). More money is spent each year studying hay fever than ME/CFS.

11. Currently, there are no FDA approved treatments for ME/CFS and there is no cure.

Updated: September 2012


Some things you can do to help:

1. Help spread the word that ME/CFS is a serious and multi-systemic disease. If someone has false misconceptions about the illness, speak up and correct them.

2. Don't call CFS "chronic fatigue." CFS is a complex illness affecting many different organ systems; it is not a single symptom. Referring to it merely as "chronic fatigue" (rather than CFS or ME/CFS) is not only incorrect, it can actually feel disrespectful.

3. If you know someone with ME/CFS, let them know you care. Drop them a line from time to time (without expecting a response). Listen to what they have to say and ask if there's anything you can do to help.

4. Become educated and involved. Read up on ME/CFS from legitimate sources and stay informed. Join advocacy groups such as the ones linked on this page, sign petitions, watch online webinars, and/or write to Congress to request more funding and awareness.

5. Wear a blue ribbon to show your support. If you are on Facebook, consider putting this twibbon (or this twibbon) on your profile picture to help raise awareness.

6. As noted above, ME/CFS is one of the least funded of all illnesses. If you can afford to, make a donation to one of the many ME/CFS charities. If you are unable to donate, you can instead write to your local senators and representatives and ask that they allocate more funds toward ME/CFS research.

7. Below are a few informational videos about ME/CFS.  Take a look, listen and pass them on.

SolveCFS Video



Sleepydust Video



May is also Lyme Disease Awareness Month. To learn more about how this co-existing infection may be complicating my personal case of ME/CFS, please read my previous post titled A Note on Lyme Disease.

Thank you.

Permission is given to anyone who wishes to re-post or link to this page.

Happiness & Other Tidbits

So, better late than never, right?

A few months ago (okay, more like seven months ago) I was honored to find I had been tagged by Joanne ( of Joanne's Cottage Garden) in what is apparently called a meme. The idea is to list 10 things about yourself you think your readers may like to know, then ask other fellow bloggers to in turn do the same.

Much thanks also to Dominique at 4Walls and a View , Forgetful Girl and Lisa at Sundog Tales who all (fairly) recently nominated me for a Happiness Award. The concept there is similar, too: list 10 things that make you happy, and then nominate others to do likewise.

So, while it took me awhile to finish it, here are my lists! I'm combining the two awards into one entry. I think that's allowed, right? :)

Here are 10 tidbits about myself you may or may not be interested in (insert drum roll here)....

1. I was named after mountain laurels, a flowering plant abundant in New England (where I grew up). I was not named after Laurel and Hardy, though I get that question a lot.


2. I was born a blonde, and stayed fully blonde until I was about six years old. I'd say that explains a few things about me, but I don't want to insult my blonde friends.

Me, age 4-ish.

That photo was taken at Storyland in N.H. I cropped out the freaky looking clown behind me so as to not scare anyone.

3. I grew up in a small town with quite a few dirt roads, no street lights, no banks, no gas station, no restaurants and just one small general store.

Okay, so that's not an actual working road in my hometown. It's a small path off one of the dirt roads, but you get the idea. :) One of my favorite memories as a kid is riding my bike to the small convenient store with friends. We would buy candy or ice cream treats for 25 cents... which I think officially makes me sound old.

4. I have always deeply yearned to be a mother. It's something I've dreamed of since I was a little girl, and I continue to hope that I will still someday have the chance to experience all the joys of motherhood.

5. I studied abroad in London for a semester my junior year of college, and backpacked through Europe with a friend during spring break. After college, that same friend and I drove across the U.S. for almost 2 months. I love to travel. Some of my favorite places include Hawaii, Bryce Canyon, and Italy. Here are some photos I took of said favorite spots:

Venice, Italy

Kauai, Hawaii

Bryce Canyon, UT

6. I have always wanted and would still love to take karate classes. I would also love to take dance lessons of all kinds, as well as photography, drawing, painting, watercolor, film, cooking, sailing, yoga, and a dozen or so other classes.

7. I consider it a great honor to be my nephew's godmother, and I absolutely adore both my niece and nephew. I wish so much I could be more active in their lives.

8. The day my fiance proposed to me was the happiest day of my life. I am so fortunate to be engaged to my best friend.

9. I would love to spend some time in Kenya or Nepal or some third world country and volunteer to work with poor women and children there.

10. Illness has taught me a lot about patience, forgiveness, gratitude, hope, humility and grace. In the process, I've also learned that your life is not defined by circumstances, but by how you respond to those circumstances. I dream every day of how glorious it will be to someday get my health back.

~~~~

As for 10 things that make me happy (insert more drum rolls)...

1. My fiance. Everything about him makes me happy: his friendship, understanding, humor, intelligence, strength, kind heart and his love. He makes my spirit fly, even if my body is stuck in bed.

2. Family and friends. I feel grateful to have a healthy family, loving parents and so many wonderful, loyal and life-long friends.

3. Books. I love learning, getting absorbed and being transported to distant places with a good story. I am so grateful for audio-books which regularly allow me to do so.

Me listening to an audio-book

For Christmas this year, I finally entered the 21st century when I received a little mp3 player so I can download books online, which also makes me happy.

4. Music. I enjoy all forms of music, from rock to classical to almost everything in-between. Music can immediately transport me back to healthier times and memories, as well as to new places I've never been. I love music that touches you to the core, takes you on a journey, and expresses what words alone cannot.

5. The internet, which allows me to keep in touch with friends and stay connected to the outside world in ways I otherwise could not.

6. The rare but sweet chocolate indulgence.

7. Nature. I love nature and am grateful for all the glimpses of it I can still experience from afar... from the bright blue sky out my window to the comforting sounds of bird song and the soothing, earthy smell of a soft rain.

8. Simple daily blessings like good food and clean sheets, a nice breeze from my window, or a surprise email from an old friend.

9. Dreams. I have amazingly vivid dreams. It is in dreams that I can still walk, talk, run, shower, sing, dance, work, travel, visit with friends and family, meet new people, laugh out loud, have a family of my own, paint, draw, swim and even fly.

10. Envisioning my future and all the millions of things I hope to do when well. I am ever grateful for the strength and endurance of hope.

Photo from weheartit.com

Thanks to all for the nominations! As for passing them on, I think anyone who hasn't already done so, is able and wishes to participate should make a list as well. It's a good way to stay mindful of your blessings, which can sometimes be a challenge when chronically ill.

Eyes Wide Shut

I went to an all-girl, Catholic high school with only 44 students in my graduating class. Among other essential courses in English, math and science, every student had to take a typing class as part of the required curriculum. This, at the time, created a bit of a stir among some of us independent, strong-minded young women. I mean, really. Typing?? Did they think we were all destined to become secretaries?

But, of course, our protests fell on deaf ears. The powers-that-be continued to insist that we all sit in front of our (now extinct) electronic typewriters, dutifully typing "asdf jkl; " over and over again as we (or at least, I) rolled our eyes to the ceiling at the utter silliness of it all.

It's a funny thing, though, because that typing class turned out to be much more useful to me in my life than the more impressive courses like chemistry or physics. In fact, it may have been the single most useful class I ever took.

Here's why: something I have yet to mention on my blog is that I type with my eyes closed. Without looking at the screen (since my eyes are shut and all), I type out everything I want to say, then open my eyes to go back and look for typos. Fortunately, the plethora of said typos are usually highlighted in red, so I can spot them with greater ease. I fix a few, then rest, then go back to fix a few more, then rest, and so on.

Photo from Getty Images

Once the typo's are fixed and there are no more bright red lines to mock my typing skills, I am then able to listen to what I wrote and make corrections as necessary.

I listen to what I wrote because I can't read what I wrote. Due to neurological problems that effect both my vision and cognition, I have been unable to read more than a few sentences per day for many years. Doing so causes a setback (or crash) that can take weeks, or even months or years to dig out of, depending on how far I push it.

Fortunately, as this issue got to be a bigger and bigger problem for me, threatening my ability to even send or read email, my fiance began to search for free text-to-speech programs online. We found one that worked for me, and I have been using it for many years now. The speaker program not only reads back my own writings, but it also reads all of my emails, forum messages, comments, blogs, Facebook postings, and websites I visit. Essentially, I use the program to read everything.

I don't mention this to people often, as they tend to find it odd for some reason. I think some are taken aback that something with such a silly name as chronic fatigue syndrome could cause significant neurological problems and actually rob you of such everyday things as the ability to read or watch t.v. I also think others are weirded out by the computerized voice itself because it sounds so.. well, computerized. "Can you even understand what it's saying?" someone once asked me when they overheard my computer chattering away at me. I admit it takes some getting used to, but I've learned to adjust. In fact, I now welcome the voice, as to me it has become the sound of a familiar friend of sorts, one without whom I'd be lost.

I wanted to share this aspect of my disability because I know I am not the only one who faces this challenge. My fiance actually uses the program as well because he has the same kind of struggle. Many people with ME/CFS tend to find it more and more difficult to read, either due to the vision problems that often accompany this illness, the cognitive disturbances, the incapacitating fatigue or all of the above. And while for some this may be a mere, mild frustration (depending on severity), for others, it can mean a complete disconnect with the outside world. Compound this further with the difficulty of speech and interaction that some (like myself) also experience with this illness, and all means of communication are threatened to be lost.

So, in the event this program may be useful to some of you or someone you know, I thought I'd share it with everyone today. There are many different programs available; some are free and some must be purchased. The one I use is called Deskbot, which can be found at http://bellcraft.com/deskbot/. It's not particularly advanced, but it has worked well for me. Please make sure you are visiting the company's direct website, however, as some downloads for this program come from questionable sites and may contain viruses. Always make sure your anti-virus software is up to date before beginning any download.

Another program is called The Natural Reader and can be found at: http://www.naturalreaders.com/

This reader is actually a bit more sophisticated than my own, and when I'm up to giving it a try, I may make the switch.

Anyway, there have been a lot of other things I've also been hoping to write about these last many weeks but, regretfully, I have simply been too ill. I've recently suffered yet another significant crash, along with the myriad of tremendous frustrations and disappointments that always accompany a setback. So, for now, I'm continuing to hold out hope, attempting to rest as much as possible and taking things moment by moment.

At this particular moment, I'm off to open my eyes and typo check. Wish me luck. :)

Everybody Knows About Me

Sometime last year, I stumbled upon a great song about ME/CFS called Everybody Knows About Me by the band Cinder Bridge.  It was written by Susan Wenger (the band's singer and keyboardist) who has a friend with the disease.

I shared the song on the Phoenix Rising Forums, a community message board for those suffering with this illness. One of the members (Teejkay, along with her husband) then came up with the idea to make a video using the song. With Cinder Bridge's permission, they requested photos of people from the forums who have long suffered from ME/CFS, set the photos to fit the music and created the below video for it.

I wanted to share it here because they did such a great job, and because I was so honored to participate. Please share widely in order to help increase awareness. Thanks for watching!

An Interview

Recently, Robyn over at "How are You?" and Other Dumb Questions contacted me in regards to an article she was writing for her college journalism class. The article was to focus on the trend and impact of chronic illness, and would include interviews and discussions with various bloggers describing their experiences living with ME/CFS.

I thought she asked some great questions, which helped to provide not only a glimpse into my world, but also into the world of both the chronically ill and those who are on the severe end of the ME/CFS spectrum. I requested Robyn's permission to post our interview on my blog, and she kindly agreed. You can find it in its entirety below.

Many thanks to her for inviting me to participate. I was honored to be part of the project! Please be sure to check out her blog, which is linked above.

*************
Interview:

Hi Laurel,

Thank you so much for getting back to me! I’m delighted that you’ve agreed to my interview. I absolutely understand your limitations, and I am happy to conduct the interview via email.


First, a few basics:

1) Where do you live? With whom do you live?

I live in Arizona in my parents' home. I moved to AZ from Boston sometime after getting mono, but before being diagnosed with CFS.

2) Are you married? I read about your fiancé on your blog—congratulations! What are your plans for the wedding, or are they on hold because of the illnesses both you and your fiancé experience?

Thank you! Unfortunately, we have not yet married. Our wedding is on hold until our health improves. We live in different states about 2,000 miles apart, and we are both currently too sick to travel or pick up and move. Jim was able to fly out here to surprise me and propose, but it was an enormous effort on his part and takes a big toll on his health. So, as much as we'd love to get married now, it will have to wait until one or both of us is feeling much better. Then we'll both be dancing down the aisle. Or wheeling down it. Whatever the case may be. :)

3) Speaking of your fiancé, I understand that he too suffers from debilitating CFS and is wheelchair-bound. Can you tell me a little bit about your relationship and how your understanding of illness brings you closer?

It is wonderful to have a companion who can fully understand this illness and all its complexities, frustrations and difficulties. CFS is a disease so often misunderstood by the non-sufferer, and it's a real comfort to have a companion who can so completely relate. At the same time, it can also be very difficult because of all the restrictions CFS creates for us, and because we both know just how much the other is going through.

But to be honest, Jim and I actually don't spend that much time talking about CFS. We do discuss it of course, but we both have so many similar passions and interests in life that there are always countless other things we want to talk about. That's what I find most fulfilling about our relationship... our connection beyond and despite CFS.

Also, Jim is incredibly smart and very funny. We have great discussions, and he often reminds me to laugh and keep smiling despite it all. I think that's really important. I don't think I could have gotten through this without that reminder. Or without him.


Thank you! Next, I’d really like to know more about your relationship with illness. I know the story of how you first got sick—a serious case of mono complicated itself into a severe case of CFS—but I’d like to know more about its effect on your daily life and your relationship with current doctors.

1) First, the name “chronic fatigue syndrome”—do you feel it describes accurately what you have? Why or why not?

Definitely not, and for many reasons. First, it only focuses on one symptom, and on a symptom that is common in many illnesses (as well as in every day life). Second, many sufferers would not even consider fatigue as their main or most debilitating issue. For me, if I were to list my symptoms in order of their severity, they would be 1) post-exertional malaise (worsening of symptoms after the most minor of exertion), 2) orthostatic intolerance, and 3) neurological problems/ sensory overload. Next would be incapacitating exhaustion, which leads to the other reason the name is so inappropriate. The word fatigue is a grossly inadequate term for what we experience. The exhaustion level is completely outside the normal, healthy conception of fatigue, and I think that is part of the reason it is so hard for people to fully grasp. It's much more about feeling horribly sick than it is about feeling tired. So, the name of this illness is really unfortunate and is part of what creates so much stigma and misunderstanding.

2) It took 2 years for you to be diagnosed with CFS. How many doctors did you go through before someone realized what you had? What were the frustrations of your diagnostic process?

I'd say I probably saw about a dozen or more doctors before I was officially diagnosed. I saw several internists, several infectious disease doctors, a neurologist, an endocrinologist, a rheumatologist, etc. They had to rule out all kinds of other diseases first, so it took a long time. Much longer than it should have, in part because of the lack of knowledge about CFS even within the medical community. I have had doctors tell me they didn't believe in CFS, that I was probably just depressed and should "snap out of it," and even that I needed to stop causing so much distress to my family. It's really terrible some of the things doctors have said to me over the years. Not that there haven't been some competent and compassionate MD's along the way as well, of course, but they were the rarity rather than the norm. There are very few doctors educated on CFS out there, and that's a real problem.

3) I’ve seen your Youtube video, as I mentioned before, but I’d like to know more. Please tell me how being chronically ill affects your everyday life. How many hours a day do you need to sleep? How much time are you actually able to spend doing things you enjoy? Who takes care of you? What is your relationship with your caretaker like?

Prior to getting mono and developing CFS, I slept like a rock each night, and needed very little sleep to feel energized, healthy and functional. The sleep disturbances so common with this illness seemed to occur overnight for me the very day I fell suddenly sick. So, I don't often sleep very well and don't feel refreshed even when I do. I tend to get between 5-9 hours of sleep each night, depending. If I get less than 8, I am completely non-functional.

As for day-to-day activities, I'm very limited, especially following my recent setback. I tend to spend about an hour online writing and checking email and my various social outlets, and then I'm pretty much wiped out. So, the remainder of my day is usually spent listening to an audiobook or to music or NPR/talk radio. Sadly, that's about it. It's all terribly exciting. ;) Clearly it's not the adventurous, active life I'd always imagined for myself, but I do the best I can with it and try to take things day by day. I still have faith that a full, healthy life awaits me and remains attainable.Regarding assistance, I live in my parents' house and they both help me out as needed. Due to severe orthostatic intolerance, I can only sit up for about 5 minutes, but thankfully I can make it to the rest room on my own in my wheelchair (about 3 yards away), and can still sponge bathe in bed on my own as well. So really I mostly need help with food/meals, cleaning, laundry, errands, phone calls, etc. My mom does all of that for me and I'm extremely grateful to her for it.

If my parents are not available, our wonderful next door neighbor comes by to help me out as necessary. We are very lucky to have her. We used to use a disability service, and they were terrible... incredibly unreliable. So this works out much better, and I feel really fortunate about that.

This illness is often quite hard on the caretaker as well as the patient, particularly if that person is a family member. The dynamics change, and there are so many frustrations on both ends. It's very hard to watch a loved one suffer, and feel there's not much you can really do to help. So, I try to make this as easy on my family as possible and to ask for as little help as possible as well.

4) Can you lead me through an average day being Laurel?

Oh boy. :) As mentioned above, my day-to-day life is not very exciting. The highlight of my day really is checking my email and writing to/hearing from my fiance. I am usually wiped out after about an hour of online activity, and the remainder of my day is spent listening to the radio or an audiobook. Due to neurological problems, I can't read books or really watch TV, so audiobooks have become a huge part of my life. Some days I'm too sick even for that, and can do nothing but lay in bed in silence, or listening to music.

On "decent" days, I can sometimes be wheeled to my parents' bedroom to lay in their bed for a change of scenery. Their room has a larger window with a better view of the mountains, which can make for a nice temporary escape. I call it my jail break. :)

5) What kind of stigma have you experienced having a chronic illness, especially such a severe one? How has your relationship with others changed since you have been sick?

The stigma attached to this illness is tremendous. Again, I think that has a lot to do with the name. It suggests we are all just tired or lazy, and that we should be able to deal with it and get on with our lives. I still remember the first time I told someone I had CFS and they actually laughed at me. Laughter is not a response you expect when telling someone you have a serious, debilitating, multi-systemic disease. But I've actually had that response more than once, particularly when I was still working and seemed healthy. When I first became homebound, someone actually said to me "I wish I could take time off work and just lay around the house all day too." You would never hear someone say that to a person who had just become disabled with MS, HIV/AIDS or cancer, diseases the CDC has equated CFS to in terms of illness severity and disability. So, there's a real lack of understanding.

I also think there is a stigma attached to the idea of a chronic illness in general, and to the severity of that illness. That is, if you are bedbound with chronic disease and with little improvements over time, some people can see that as a failure of some sort. They think you should be able to overcome it somehow, even if there are no viable treatments available. I actually had someone (who clearly didn't know me very well) tell me that if I am still this sick after all these years, then I must just not want to get better. It was as though the person thought I would actually choose this for myself, or as though I haven't done everything in my power to try to get well. It can feel very demoralizing.

Regarding relationships, I don't think there is a single relationship this illness hasn't affected. With my case being so severe, I am unable to talk on the phone, unable to spend much time online, and can only tolerate a few minutes of interaction. That obviously creates a huge barrier on maintaining strong relationships with the people in my life. We do the best we all can to work around it, but obviously it makes things much harder. The dynamics of the relationship also change. There's no longer an equal exchange of give and take. Obviously I'm not able to give of myself in a relationship as much as I would like, and that is hard as well.

Illness in general is also a difficult thing for a lot of people to deal with. While I am fortunate that most of my friends have stayed in touch with me, there are also a couple who have quietly disappeared. People go on with their lives. I also think some just don't know what to say after awhile, especially since I can't always respond. I certainly don't blame them for that, of course. But I do miss them.

6) Would you characterize your illness as an “invisible illness?”

The fact that most of us don't look sick does, I think, contribute to the stigma and misunderstanding of this illness. It's hard for people to truly understand just how sick we are when we look perfectly healthy. Even for those of us bedbound or wheelchair bound, it's still hard for most people to really grasp. This is made worse by the ridiculous name, as discussed above. Because really, who hasn't been chronically tired? I think until the name changes, we will continue to experience misunderstanding. I'm hoping with the latest research that things will start to turn around soon. I'm especially hopeful that new and better treatments may be around the corner.

7) You’ve mentioned that you are not depressed, which I’m glad to hear. (I unfortunately can’t say the same, but I am under adequate treatment for that part of my illness story). Even so, your blog is called “Dreams at Stake.” How does putting your dreams on hold make you feel? Are you frustrated, upset, or do you simply accept your condition?

I am fortunate that depression has not been an issue for me despite my situation. Though, if it were, it would certainly be understandable. It's easy to see why someone with CFS may also suffer from depression, but important to note that the depression is most often secondary to the illness. That is, as with any debilitating disease that involves so much loss and physical pain, there is likely to be some grief and sadness to come along with that. Secondary depression can occur with any kind of serious, life-altering illness.

While depression thus far has not been an issue for me, it is not to say I don't have my down moments, or that I am not disappointed and intensely frustrated by my situation. This is especially true when I'm having a major setback like I am now, and am even more limited and sicker than usual. It is beyond discouraging. But I try as best I can to stay focused on what I have, rather than what I've lost. I think it would be impossible to get through this on a daily basis otherwise. I am fortunate to have my fiance to help with that, as I am not sure I'd have been as successful in getting through this without him.

I think it's important to differentiate between depression and frustration. With depression, a person tends to give up all hope. With frustration, the very word implies that the hope and determination and desire are all still there. So yes, I am incredibly frustrated. I am frustrated at all the lost dreams, at all the lost relationships and experiences and goals. I am frustrated with the lack of research and understanding, the misconceptions, and the stigma. And I'm frustrated by CFS itself... its severity, its limitations, its unrelenting nature, etc. It's all unbelievably frustrating. But despite it all, there's still meaning and hope in my life, and that's what I try to focus on as best I can.

As for my blog title, I have to confess I didn't come up with that entirely on my own. I had submitted my story to The CFIDS Association of America, and they asked if they could publish it. They came up with that title, and I liked it. It summed up the main reason I had written my story -- to plead for more action and to emphasize that people with CFS are people with dreams and ambitions who didn't want to be sick, and who want to get well and live out their lives just like everyone else. I wanted to show that, even though this illness has taken away the fulfillment of many of our dreams, it has not taken away the dreams themselves.

Anyway, that was a really long answer!

8) What do you enjoy most in your life?

I've learned to appreciate the little things, which when you think about it, are really the big things anyway: my fiance, my family, my friends, good food, a bed to sleep in, shelter, the views from my window, a good book, a rare day of not being in total physical distress from morning until night, being able to write when I can, etc. If this illness has taught me anything, it's to appreciate the little things, because you never know when they might be taken from you. When I first became housebound, I thought I'd lost everything. But I could still walk, talk, shower, watch TV... I didn't realize how good I had it. :) I wish I'd been more grateful for the little things then, and so I try to be mindful of that now and enjoy what small things I can still enjoy.

Finally, I’d like to hear your thoughts on blogging and online community.

1) You started your blog last May. What made you decide to start a blog?

I started to blog for two main reasons: to raise awareness, and to have a voice. I used to get so frustrated that those of us most severely afflicted with this illness do not often get to tell our story because we are simply too sick to do so, and our stories therefore are not often heard. It occurred to me one day that I could try to be that voice, even if in just some small way. I wanted my story out there, as well as Jim's, in the hopes that it could increase awareness and would perhaps be helpful to others going through the same thing.

Blogging has become more difficult for me with this last crash, but I hope to continue with it whenever I am able.

2) How has blogging increased your feelings of community (if at all)? Have you found many others who empathize and understand your daily struggles?

The blogging community is great! When I first started to blog, I had not been anticipating that it would be so interactive, and it was a nice surprise. I am not able to be as interactive as I'd like to be (it's so hard for me to keep up with it all), but it is good to know there's such a large community out there, and that we are all supportive of each other. We are not alone, and blogging is a great reminder of that.

3) Have you joined any other chronic illness communities? If so, which ones and how have they helped/ affected you?

I do belong to some other social outlets, (e.g., CFS and Lyme message boards, Facebook, a book club, etc), though I haven't been able to be as active on any of them since crashing. But it is a great way to communicate and meet others going through the same thing, or to stay in touch with old friends, meet new people, etc. It helps with the isolation that is so common with this illness.

4) Why do you blog?

Again, primarily to raise awareness, and to get my story out there. It's a tremendous thing to feel like you are finally being heard.

5) How do you balance your desire to be online with your personal struggles with sensory overload? How do you budget your time?

Oh that's a tough one!! I am not good with pacing AT ALL. I've always been an over achiever; someone who always needs to be doing something, always accomplishing something, always active and engaged. I am not one who has ever been good at waiting, or resting, or laying around. That's really been the toughest thing for me, and is a constant struggle. I don't think I'd have gotten as sick as I have if I'd been better able to manage that struggle, instead of always being so determined to try to push past it. Even now when bedridden (in fact, perhaps even more so), I don't think a day goes by that I don't push my envelope in some capacity, hoping (despite about a million lessons to the contrary) that today will be the day I get away with it. The push/crash phenomena of CFS is such a brutal and difficult lesson to learn. But I do my best with it. I try to give myself a set time of how long I spend online each day. I don't always follow that time-line very well, but I do try.

CFS truly requires an enormous amount of patience.

Thank you again for talking with me, Laurel.

It was my pleasure, Robyn. Thank you!

Treatments - A Long List

If at first you don't succeed, try, try again. Then quit. There's no point in being a damn fool about it. -- W.C. Fields

I had to laugh a bit when I first heard this quote. Thinking back on all the hundreds of treatments I have tried and often continuously repeated despite their ineffectiveness (and, at times, counter-effectiveness), I sometimes have to wonder about myself. What was I thinking?

But there is such a desperation and overwhelming desire to get well that one will often try anything (and keep at anything) in the undying hope of it suddenly working.

After I became bedbound, I received a variety of nutritional IV's at home twice weekly (sometimes daily) for about 4 years.... despite the fact that they often made me feel worse. My doctor at the time (she is no longer my doctor) told me that the ill effects were a result of detoxification, and that I had to suffer through it in order to get well. The biggest mistake patients made, she told me, was giving up too early. I wanted to believe her so badly that I continued with the treatments for years, hoping that, contrary to the evidence and my own intuition, I was doing something which ultimately would benefit me. In truth, I was also a bit limited in my choice of doctors. I could find no other MD at the time to come to my house to see me and thus felt I had little alternative but to listen to this doctor's orders.

In the end, it turned out I should have listened to my intuition. My reaction to the IV's was not detox; it was my body's inability to tolerate the treatments. After watching a lecture by Dr. Paul Cheney, a renowned ME/CFS expert, I learned that high dose vitamin C and glutathione IVs can actually have a detrimental physiological effect in some patients with ME/CFS. Not surprised by these findings, and upon further research, I finally stopped the IVs.

The pathology of ME/CFS is complicated and every patient reacts differently to different therapies. I obviously don't want to deter anyone who may be receiving a similar treatment and responding well to it. I just wanted to make the point that I am not one to give up on something very easily.

Though I'm doubtful to ever go down such a road again, I always give any treatment a full-fledged try, often for at least a year or longer. As with anything in life, I've consistently wanted to make sure I gave it my all.

I've received a lot of emails asking me if I've tried a variety of therapies for ME/CFS, and I've therefore decided to do a quick run down of some of the many things I have indeed attempted in my hopes to get well. Please note that this is a very incomplete list and is meant only as a general summary. I have been sick for over 13 years, and to list all the things I've tried in that time would be too enormous a task. So this is just a little overview. Exciting reading, I know, but here goes ... :)

Prescriptions
A growing list of antibiotics (Erythromycin, Cipro, Zithro, Doxy, IM Penicillin, IM Rocephin, etc.), anti-virals (Acyclovir, Valcyte, Valtrex, etc.), anti-fungal (Diflucan), anti-anxiety/anti-depressants (purely to appease doctors; too many to name), anti-malarial (Mepron), anti-coagulant (Heparin), stimulants (Ritalin, etc.), thyroid/hormone replacement (including estrogen, progesterone, testosterone and hydrocortisone), B12 shots (both hydroxy and methyl), hepapressin, immune modulators (Isoprinosine), Florinef, immune enhancers (immunoglobulins) and the like.

Alternative Therapies
Acupuncture, massage therapy, shiatsu, jin shin jyutsu, energy healers, herbalists/herbs, EAV/Asyra and electro dermal testing, live blood analysis, visualization, cognitive behavioral therapy, stress reduction/management, magnetic therapy, affirmations/positive thinking, light GET/yoga and gentle lifting in bed with 1 lb ankle/wrist weights (caused huge setback), hypnotherapy, reflexololgy, reiki, detoxification, meditation, medical intuition, muscle testing, distance healing, prayer, homeopathy, herbs, colonic (ugh!), 4+ years of IV therapy (including Vitamin C, nutritional IV’s, amino acids, glutathione, H202 and saline), oral chelation and a list of supplements far too numerous to name.

Nutritional Therapies
As noted above, I received a multitude of nutritional IV’s twice weekly (sometimes daily) over several years. Almost all of them made me worse. I’ve also tried a growing list of nutritional supplements that likely exceeds well over 300 items. These include but are not limited to vitamins, minerals, enzymes, amino acids, antioxidants, herbs, probiotics, energy/nutritional/green drinks, Gookinaid, juicing, whey protein, transfer factor, colloidal silver, cell food, chlorella, mitochondrial supplements, mushrooms, immune enhancers/modulators, NT factor, adrenal glandulars and the like, NADH, D-Ribose, and so on.

Diets
Elimination diet (no gluten, sugar, dairy, wheat, etc), low carb diet, high protein diet, low protein diet, paleo diet, raw food diet, vegetarian, vegan, low sulfur, anti-candida, and a highly specific food allergy elimination, etc.

Protocols
There are several different ME/CFS and Lyme treatment protocols out there, based on a variety of different theories, or on different aspects of this complicated and multi-systemic disease. Some of the protocols I have attempted include the Yasko protocol, the simplified methylation protocol, the Patricia Kane protocol, the Dr. Zhang protocol, Dr. Gupta's protocol (amygdala retraining), the Myhill protocol (less a sauna), Dr. Martin Pall’s protocol, Cheney’s protocol (prior to his recent change to CSF’s and stem cell replacement), KPU protocol, and several other protocols I’m sure I am forgetting.

Regarding the Marshall Protocol, I had the proper testing done and it was determined (via a conversation between my doctor and Dr. Marshall himself) that I would not be a good candidate.

Doctors I've Seen
As for the various types of doctors I've seen over the years, they include about 5 internists, 3 infectious disease MD's, a neurologist, a rheumatologist, an endocrinologist, 2 dermatologists (for hair loss), an allergist, several naturopaths, a world renowned integrative medicine MD, 3 acupuncturists, 2 herbalists, 2 nutritionists, a psychotherapist specializing in chronic illness, a cognitive behaviorist, and multiple alternative health practitioners.

Whew! So, there you have my partial list. Though few of the treatments have really helped me, I suddenly feel like I've been very busy all these years. :)

As for my current regimen, it includes a healthy diet, meditation, an antiviral, medications to help with sleep, natural thyroid, Equilibrant, Hydroxy B12 shots, the KPU protocol, light stretching in bed, and about 20 different supplements. I am also attempting LDN (low dose Naltrexone) and a nutritional immune modulating powder called Avemar.

Here's hoping that new and better treatments are around the corner for us all. If nothing else, there's no doubt we will all still continue to try, try again...