ME/CFIDS Awareness Day: Being Understood

[T-shirts available at nopityshirts.com]

Right, so this is going to be a little off topic for a moment.

May 12 is the day when ME/CFIDS organizations around the world recognize ME/CFIDS Awareness Day. Those of you who read this blog much know that I frequently mention having this disease. However, it occurred to me a few months back that I haven't ever really explained what that means precisely like I have with being on anti-coagulants (blood thinners) or having Fibromyalgia (which shares this awareness day with us, as it's a fairly common co-morbidity and includes a lot of the same symptoms). So I decided then that a great way to celebrate Awareness Day would be to create a little more awareness here about ME/CFIDS. And I should have started working on this post then because it's been a lot harder to write than I thought it would be, hence the reason it's a bit late...

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First, the name. The "ME" stands for Myalgic Encephalomeylitis, which literally means "pain and inflammation of the brain" and has traditionally been a British designation for a disease known in the United States -- both unfortunately and incorrectly -- as Chronic Fatigue Syndrome, a term that was created in the mid 1980s by the Centers for Disease Control (CDC).

In the 1990s, a group that later went on to form the CFIDS Association (the primary advocacy group here in the US), added "Immune Dysfunction" to the title to emphasize the immune system abnormalities that have long been associated with this disease, such as the low activity of Natural Killer cells, low molecular weight RNase L (an antiviral enzyme) and higher rates of apoptosis (programmed cell death) and gene expression of white blood cells.

I use both ME and CFIDS because at the moment there is a huge debate going on in the community about renaming the disease, with a committee of top physicians and researchers recently choosing the less specific term Myalgic Encephalopathy (i.e. pain and brain pathology) to replace the universally despised "Chronic Fatigue Syndrome." However, they have also chosen to use the two together until government agencies such as the CDC or Social Security (for people like me who can't work because we're too sick) recognize ME in place of CFS. To me, using them together just feels a tad more accurate for now.

Second, what is ME/CFIDS? I think Maryann Spurgin of the ME Society of America summarizes it best by stating that it's "a multi-system disease adversely affecting the cellular mitochondria and the heart, brain, neuroendocrine, immune, and circulatory systems." While fatigue, or more accurately, profound exhaustion, is indeed one symptom, calling this Chronic Fatigue Syndrome is like calling a concussion merely "a headache" or Tuberculosis something like "Chronic Coughing Syndrome." In other words, it's a hell of a lot more than just being tired.

I've often compared it to having the flu forever. However, in this post, Dyke Girl (aka Jigsaw Analogy) pointed out that it's actually worse than that. And she's right. In addition to flu-like symptoms -- muscle and joint aches, headaches, low grade fever, feeling chilled, tender lymph nodes and sore throat -- people with ME/CFIDS will usually have post-exertional malaise (riding an exercise bike for even just three minutes can send me to bed for the rest of the day), shortness of breath, widespread pain, irritable bowel as well as neurological problems such dizziness and balance problems, impaired spatial perception and cognitive abilities, difficulty processing sensory information and orthostatic intolerance (fainting or near fainting due to blood pressure drops). The most annoying part of all this is that all these symptoms are remarkably variable. Some days I can do things that two or three days later I couldn't even dream of doing. Why? Got me. I mean, obviously over activity will exacerbate symptoms (hence the reason I get into a lot of trouble for overdoing it). But a lot of the time it's completely arbitrary.

Lately I've started comparing it to having both Multiple Sclerosis and mild Congestive Heart Failure. My best friend has Multiple Sclerosis and he is often amazed at how similar our symptoms are, except mine are more severe (indeed, he's still in his PhD program and I'm not). A lot of that reflects the fact that his doctor knows what causes his symptoms and has medicines that can treat his MS. That's not yet the case with ME/CFIDS.

Third, so what causes ME/CFIDS? That's the million dollar question and a lot of the problem is sort of a chicken and egg one. Some have speculated that it's a virus that attacks specific parts of the immune system (whereas HIV is a catastrophic attack on the immune system). Some think it's undiagnosed chronic bacterial infections such as Lyme Disease, but the use of antibiotics (and growing antibiotic resistance) makes this a very contentious topic. One provocative theory argues that ME/CFIDS and Autism are one and the same disease caused by a genetic inability to maintain adequate levels of glutathione and that a person gets Autism if the glutathione problem develops within the womb and up to three years of age, while it becomes ME/CFIDS if the problem happens after three years old. But most of the more prominent research, however, has focused on the immune system and the brain, though in the last few years more and more research has also focused on oxidative stress, mitochondrial deficiencies, and the cardiovascular system.

Fourth, why they hell would I talk about this on a spanking blog? Well, I've been talking about having ME/CFIDS since the first few months of starting this blog back in 2004 (wow -- can you believe that was almost three years ago?). I mean, it touches just about every part of my life so it would be difficult to not talk about. And while I may have a disabling disease, it doesn't keep me from living. This blog is my way of talking about one particular way I live life to it's fullest as best I can.

I also wanted to provide some context. I've had this disease on some level for about 24 years now -- in it's more debilitating form for about 8. I'm not getting better anytime soon (indeed, I've been getting progressively worse save for a slight improvement in 2003 and the winter of 2005). Now, there may well be a breakthrough in the research down the road that will provide some relief (God-willing!) but I've come to terms with life as it is. While I'm sure there are going to be more good days in my future at some point, I also know there are going to be more health-related problems as well.

And when I write about those bad times, I understand that it's natural to feel badly after reading them. But making people feel badly isn't really my aim. I write about that stuff for the same reason that so many people blog: we are relational beings and sharing our stories is part of connecting with other people, of being human. C.S. Lewis once said that we read to know that we are not alone, and I think the same is true of writing. We string together words and send them out in the hopes that they resonate with somebody else -- an act that, perhaps, I appreciate all the more being housebound (seriously -- it beats talking to the cockroaches, which I've found myself doing lately with disturbing frequency...).

In other words, it's okay to look past whatever illness related context I may start out a post with and enjoy or contemplate whatever larger theme/story I'm writing about. It's okay to make jokes (like Alex did in this post). It's okay to ask questions. And, of course, it's okay to feel whatever the hell you want to feel about them.

Lastly, a little disclaimer. Everybody who has ME/CFIDS has had the experience of meeting somebody who had it (or knows of someone who had it) but got better thanks to [insert magic cure of your choice]. And there are some people who do eventually recover after a lot of rest and combinations of pharmaceuticals and nutritional supplements. I want to assure you that one, I stay more aware of current ME/CFIDS research than all but a small handful of people on this planet. I've also studied and utilized many forms of alternative medicine (and continue to do so). If I haven't tried something it's because there's either not enough evidence (including even anecdotal) to support its efficacy or, more likely, I haven't the money (this disease can be a bottomless pit financially). Ultimately, spending all my time trying out every magic cure out there is not only hard on the pocket book, but it doesn't leave me with much energy to do any, um, you know, living.

So now you know a little bit more (well, probably far more than you really wanted to know) about what those seven capital letters with a slash in the middle that I frequently refer to mean. The woman who makes the t-shirts at the beginning of this post, Ricky Buchanan, has also written An Open Letter to Those Without CFS or Fibromyalgia that you may also want to check out. She ends by saying that most importantly she wants people to understand her. And that's really what this post -- indeed my blog and any blog -- is about. All of us, healthy and ill, just want to be understood. I hope this post has helped you to understand me and all ME/CFIDS patients a little bit more.