Tuesday, May 11, 2010

May 12th: ME/CFS Awareness Day

 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.

Friday, May 7, 2010

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.

Saturday, May 1, 2010

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. :)