Our Schizophrenic Cousins

Pity the poor CFS sufferers and their doctors, alone in the world, toiling in obscurity, trying in vain to prove to the world that their disease is not mental but viral in origin. Or so I thought.

Three years ago, when I was still just learning about CFS as a biological illness, I read an article in a science magazine about a possible viral or bacterial cause for schizophrenia. “Of course!” I thought. So obvious! So elegant! This must be how people felt when The Origin of the Species was first published!

So I was surprised a few months ago when I saw an article in Discover Magazine about the "Schizophrenia virus controversy", What? Those stubborn psychiatrists just can't let go of their precious mental disease? Come on!

I read the first few paragraphs, but I was tired, and hadn't been able to do much reading lately. So I opened a tab for it in my browser and it sat there unread, for months. I finally just read it tonight and I am KICKING myself for it because it is the most mind blowing and informative story I've read all year.

Please read The Insanity Virus.

It turns out it's not just a virus or bacteria they're talking about. It's a retrovirus. An endogenous retrovirus. I don't know as much as I'd like to about virology, but I do know that endogenous retroviruses, ervs, are supposed to be harmless. The virus, HERV-W, is also implicated in MS and bipolar disorder.

Reading about this virus was eerily like reading about CFS, though, disappointingly, CFS and XMRV are never mentioned.

It is a very easy, very enlightening read. If you are not yet convinced of it's relevancy to your life, I have some quotes prepared that may change your mind. Basically I'm going to quote heavily from the article and comment on it.

1) The Birth Month effect leads to the suspicion of an infectious cause for Schizophrenia

Even more puzzling is the so-called birth-month effect: People born in winter or early spring are more likely than others to become schizophrenic later in life. It is a small increase, just 5 to 8 percent, but it is remarkably consistent, showing up in 250 studies. That same pattern is seen in people with bipolar disorder or multiple sclerosis.

"The birth-month effect is one of the most clearly established facts about schizophrenia," says Fuller Torrey, director of the Stanley Medical Research Institute in Chevy Chase, Maryland. "It's difficult to explain by genes, and it's certainly difficult to explain by bad mothers."

The facts of schizophrenia are so peculiar, in fact, that they have led Torrey and a growing number of other scientists to abandon the traditional explanations of the disease and embrace a startling alternative. Schizophrenia, they say, does not begin as a psychological disease. Schizophrenia begins with an infection.

(Italics mine. And by the way, I was born in February, my healthy siblings were born in August and late April.)

2) The virus

If Torrey is right, the culprit that triggers a lifetime of hallucinations—that tore apart the lives of writer Jack Kerouac, mathematician John Nash, and millions of others—is a virus that all of us carry in our bodies.

Emphasis mine, because if this is true, then it wouldn't matter if XMRV or whatever it's called is an erv.

We imagine viruses as mariners, sailing from person to person across oceans of saliva, snot, or semen—but Perron’s bug was a homebody. It lives permanently in the human body at the very deepest level: inside our DNA. After years slaving away in a biohazard lab, Perron realized that everyone already carried the virus that causes multiple sclerosis.

3) The following passages are about schizophrenia but you could easily start reading them and think they were about CFS:

Schizophrenics also showed signs of inflammation in their infection-fighting white blood cells. “If you look at the blood of people with schizophrenia,” Torrey says, “there are too many odd-looking lymphocytes, the kind that you find in mononucleosis.” And when he performed CAT scans on pairs of identical twins with and without the disease—including Steven and David Elmore—he saw that schizophrenics’ brains had less tissue and larger fluid-filled ventricles.

By the 1980s he began working with Robert Yolken, an infectious-diseases specialist at Johns Hopkins University in Baltimore, to search for a pathogen that could account for these symptoms. The two researchers found that schizophrenics often carried antibodies for toxoplasma, a parasite spread by house cats; Epstein-Barr virus, which causes mononucleosis; and cytomegalovirus. These people had clearly been exposed to those infectious agents at some point, but Torrey and Yolken never found the pathogens themselves in the patients’ bodies. The infection always seemed to have happened years before.

Again, emphasis mine.

Here just read XMRV for HERV-W, PWCs for schizophrenics, and fatigue for psychosis:

The initial infection could then set off a lifelong pattern in which later infections reawaken HERV-W, causing more inflammation and eventually symptoms. This process explains why schizophrenics gradually lose brain tissue. It explains why the disease waxes and wanes like a chronic infection. And it could explain why some schizophrenics suffer their first psychosis after a mysterious, monolike illness.

Sound familiar?

And here is the last paragraph, which brings hope:

She is running a clinical trial to examine whether adding an anti-infective agent called artemisinin to the drugs that patients are already taking can lessen the symptoms of schizophrenia.

Even after all that, many medical experts still question how much human disease can be traced to viral invasions that took place millions of years ago. If the upcoming human trials work as well as the animal experiments, the questions may be silenced—and so may the voices of schizophrenia.

(Artesunate, a derivitive of artemisinin, is what I am taking along with wormwood per Dr. Cheney's instructions.)

So besides the eerieness, the main thing I took away from this article is that CFS does not have to shift this paradigm alone. Schizophrenia is "one of the most common mental diseases on earth, affecting about 1 percent of humanity" A lot is at stake. People are doing research on this.

*After I posted this I did a quick google for "HERV-W cfs" and the first thing to come up was this thread on Phoenix Rising.

Is this a life?

I know a few posts ago I wrote that I was feeling better. Well, forget about that. I am worse than ever.

I play Snood and Geosense. Any little online game that I can play without having to think. No chess puzzles. No crosswords. Just shooting little colored circles at other colored circles or clicking on cities on a map. For hours. Compulsively. I want to stop, but I don't, or can't. This happens sometimes and it's been going on for years. I tried deleting Snood from my hard drive for a few years but there are always other games free online that I will find my way to.

I suspect I do it because I can't do anything else. My biggest complaint right now, what bothers me more than my terrible digestion and back pain, is the inability to focus. But it's easy to focus on Snood. And if I tear myself away, what will I do if I can't focus on anything?

A few years ago I had been playing Snood for hours, compulsively. It must have been around this time of year because I remember my friend was over watching the Oscars. And for some reason I took an Adderrall. And after 15 minutes I didn't want to play Snood anymore. It was amazing. I was free. It was that easy.

But I don't think I have any now. And even if I did, they have some bad side effects sometimes. They're not something you can take regularly for too long. I know, I tried.

So that is one of my more obvious addictions/vices. But I think I have another: school. And yesterday I fell off the wagon.

School is a good thing, generally, but not for me. Not right now. I am too sick and school makes me sicker. I knew it was bad for me but I kept going and dropping out when I had exhausted myself, and going and dropping out...

And yesterday, even though I am worse than ever, and maybe because I am worse than ever, I let myself entertain the idea of online classes. I gave my contact info to a website and a minute later my phone was ringing. A representative wanted to talk to me about my educational opportunity.

We're just like a real university! We're for people with a burning desire to work in the career of their choice. You have to commit 20-35 hours a week to your classes...

Then I knew this wasn't for me and I tried to say so, I may have a burning desire but I was all burnt out so it didn't matter. But I was talking to a salesman so the conversation didn't end quite that quickly. But even after we hung up I kept thinking about it. It was like a little devil on my shoulder. Maybe you could do 20 hours a week if you didn't have to get dressed or drive anywhere for the classes or walk around a campus...you won't know unless you try...won't it feel good just to try?

And then I wanted to talk to someone about it, so I called my mom, who is always saying I should look into online courses. So she was happy to hear that I did, which had the unexpected effect of making me sad. We talked awhile and it actually ended up sounding like I was going to do it...even though I knew I wasn't.

20-35 hours a week

I think about my typical day. Waking up is hard, and nowadays, usually a little after noon. But once I've been up for 15 minutes and brushed my teeth and done my medicine routine, that's when I feel my best. But it lasts for half an hour at most. Then I'm weak, maybe from reading too much, maybe from not eating. Maybe for no reason. And then it's time to eat something or I will get even dizzier and fainter. I go to the kitchen (most days, there's been times I am too tired and just wait all day for my boyfriend to come home from work and get me food.) But usually I go to the kitchen and open the refrigerator. Sometimes I might stop there if there's nothing I can just grab and eat. Sometimes if anything requires mixing or heating up I give up and go back and lie down. But I'd say more than half the time I can heat something up or there is something I can just grab. So I eat. And then I start to feel the coma coming on. I feel poisoned, dizzy. I might lay down and just close my eyes. I might go to sleep. I might stay awake but be useless. And this is how I feel for the rest of the day, maybe I will feel better again around midnight.

At the beginning of the month I could read real books. But not now. I'm listening to The Immortal Life of Henrietta Lacks. It's really good. But I can't listen to it today. Today is one of those days I am feeling sorry for myself and don't want to listen to stories about people being doctors and journalists and driving and eating and living lives they apparently take for granted.

I'm afraid I haven't made my point but I have to stop writing and just post this soon or it will never get finished and posted.

I read Toni Bernhard's How To Be Sick last month. I really liked it. There is some great advice in there. Good attitudes I've tried to adopt. But it doesn't happen overnight. She says that when you feel sad about something you can no longer do, instead, focus on feeling happy for the people who can do it. Easy at first, but keeping it up as an attitude...will take time. She also says that when you are feeling sorry for yourself have compassion for yourself and compassion for everyone else who is suffering. It's a beautiful idea. But easier said than continually done. It's a Buddhism inspired book, but she says you don't have to be a buddhist to benefit from it or believe in God or anything like that. But there is one thing you do have to do she doesn't mention that is just a big a leap. You have to change your idea about what a full life is supposed to be. You have to be OK with being sick.

She was a law professor when she got sick and now she seems to be mostly housebound, like me. She says she discovered opera and tennis after getting sick. So on a night when her husband is going out with her family and friends and she is sad that she can't go, she tries to make the best of it and listen to an opera CD.

Today I got up and felt pretty good, considering. I was able to unload the dishwasher, which usually means it's a good day. Which is good, because last night was terrible. Jim was over. I don't remember what we did. Watched two episodes of Monk on TV and then he just hung around while I addictively played Geosense and ate the gluten free cookies I made him get me. I wanted to tell him about my day, about the online classes, but I was too tired to talk.

It's been 3 hours now since I had breakfast and I'm starting to come out of my coma...but I didn't eat much and I'll have to eat again soon. After I ate I sat on the couch and I asked myself, what can I do now? Can I do the Monday crossword? No. Can I read? No. Can I listen to an audiobook? No, no. Can I listen to music? Maybe... I thought of Toni Bernhard and her opera. I put on a classical radio station. At first it's energy and complexity annoys me, but after a few minutes I'm enjoying it and I close my eyes and lie down.

Lying on my stomach. Listening to classical music on the radio. I know this might be all I do today. "Is this a life?" I ask. And I know I have to answer yes, it is, because the other answer will be overwhelmingly depressing.

*My days are not totally books and music. Before I ate and right after I also talked to or left messages for 3 different doctors and wrote an e-mail. I think about doctors and medicines all the times. It just didn't just fit into this post.

Let’s all give each other a pass, shall we?

I read David Rakoff's new book of essays "Half Empty" last month. The first essay is about an interview he did with a psychologist who wrote a book called "The Positive Power of Negative Thinking". She doesn't say pessimism is better than optimism, but that they both have their attributes as well as their blind spots, and whichever one you are, half empty, or half full, things will probably turn out the same regardless. I liked that.

The last essay was about his second cancer diagnosis. He had Hodgkin's disease when he was 22, and now in his 40's, he was diagnosed again with cancer and faced with the possibility of of losing his left arm because of a tumor. Fortunately for him he beat the cancer and kept his arm. But there was a long time where he didn't know how things were going to turn out. His account of his friends reactions to his illness is hilarious:

A friend asks if I’ve “picked out” my prosthetic yet, as though I’d have my choice of titanium-plated cyborgiana at my disposal, like some amputee Second Life World of Warcraft character. Another friend, upon hearing my news, utters an unedited, “Oh my God, that’s so depressing!” Over supper, I am asked by another, “So if it goes to the lungs, is it all over?” Regrettably, very possibly, I reply, and when I go on to mention as how they no longer give much radiation for Hodgkin’s he says, “Well, you got twenty-five years out of it,” as if the radiation was a defenseless washing machine I was maligning, and what did I expect, really?

But here is the part I wish I could tattoo on the inside of my eyelids as a reminder for myself:

...But here’s the point I want to make about the stuff people say. Unless someone looks you in the eye and hisses, “You fucking asshole, I can’t wait until you die of this,” people are really trying their best. Just like being happy and sad, you will find yourself on both sides of the equation many times over your lifetime, either saying or hearing the wrong thing. Let’s all give each other a pass, shall we?

Yes let's! Because as much as I get upset when I think someone has said the wrong thing to me, I worry much more about when I think I've said the wrong them to someone else who's suffering. It's all awful and awkward. We're all trying our best. I hope I can always remember that.

Snowman on a Ledge

So glad it's a white Christmas here in Ohio. I made this snowman from the snow on my window ledge last week. Peppercorn eyes, carrot nose, two arms made out of pretzels...

He's melted away now but I like looking at the picture. Merry Christmas and Happy Holidays everyone, and take it easy!

Tarantella

"Warning: Music Theory Ahead - Circle of Fifths" I'd been reading the first two chapters of The Only Basic Piano Instruction Book You'll Ever Need. I put it down. It was hard enough reading the basic stuff I already knew. Has my brain always wanted to shut down like this at the slightest onset of stress or difficulty? It's hard to imagine it was ever different, but it was, it definitely was.

My sister comes home and talks excitedly about what classes she'll be taking for her final semester of grad school. My brother, in his last year as an undergrad, laments the rigorous grad school application process. My dad spends most the day programming the final touches on his iPhone calculator app. I miss learning things.

I've been staying with my parents for a month now. I was feeling better when I set out, so instead of the usual herbal teas for colds and sore throats I packed yummy chocolate teas and caffeinated green teas. I had a separate suitcase just for books. (Getting a kindle this Christmas I think...) But as soon as I got home I got sick and had to have my dad run out to the health food store and buy me more throat comfort tea. A month later and I still haven't really recovered. My mom and sister are on their way home from taking Grandma out for a Christmas lunch. I'm sorry I missed it but I was afraid to go out in the cold feeling like this. And really, it would just be imprudent.

Haven't made as much progress in my books as I'd hoped. Haven't even started The Broom of the System, which I chose just because it takes place in Cleveland. Or so I heard somewhere, but when I mentioned it to my boyfriend who read it he wasn't sure. He's currently reading DFW's Everything and More: A Compact History of Infinity, the rare literary book that requires you to remember your college math. A computer science major, he's getting through it but slowly and with difficulty. I know I will never try. My math education ended my junior year when I failed trig. Or was it the year before when I slept through every Algebra II class? (I felt terribly guilty about it, but it was after lunch, and still now most days I don't have the energy to digest food and stay awake at the same time.) It's a little sad because one of my most vivid childhood memories is my dad telling his little girl, who back then was a good math student, to make sure to take calculus because it was what "separated the high paying jobs from the low paying jobs"

My regrets about never learning calculus are small. I did love physics. I think I can mark the strike of my CFS by my grades in physics, sophomore year, A's first two semesters, and C's and D's the last two. I remember everything going foggy and blaming it on the student teacher not being very good. I remember my professor asking me in front of the whole class, mostly seniors, if I had "sophomoreitis". And I also remember the day he pointed a video camera at us connected to a TV and everyone laughed because my face was the only one you couldn't make out. I was all a white blur in the low resolution with my pale skin and blonde hair.

Physics was fun but I was never going to be a physicist, CFS or not. I would have taken calculus though, it would've looked good on my college applications, and I would actually know what my dad is talking about when he tries to explain to me all the advantages of his iPhone calculator app. That would be nice.

So when I got to the Circle of Fifths Warning, I put the book down. Learning the Circle of Fifths and all that theory was exactly why I bought the book, but today's not the day. There will only be one or two windows of opportunity in the next month or two where my brain and body are ready and willing and normal enough and I can sit at a piano and try and learn. But not today.

Instead I pick up Unbroken. It was not in my suitcase of books. Our town has an independent bookstore and when I first got home I asked my mom to take me there so I could get a birthday card to send to my boyfriend. I didn't want to buy anymore books. My recent pilgrimages to Elliott Bay Book's and Powell's left me with more than enough. Plus I had asked for that Kindle for Christmas. But then I saw the store owners had put it on the main display. It was the only featured book, my heart melted a little. Not that they knew about her CFS and did it out of the goodness of their hearts, they did it because they knew it would sell, be a good Christmas gift etc. But still. I picked it up and mumbled something about having to buy it. My mom asked why, and I told her about how the author had CFS and I felt some kind of duty, affinity. "I'll buy it for you" she said, before I was finished trying to explain.

My bookmark is only on page 11. I flip to the back cover. All the reviews are for Seabiscuit, except the one on top, from Rebecca Skloot, "author of The Immortal Life of Henrietta Lacks" which I was excited to see featured at both Powell's and Elliott Bay and on pretty much every top 10 list this year. I remember turning on NPR and hearing an interview with the author back in February when it came out, but I didn't catch her name. If I did though I would have immediately assumed she was related to Floyd Skloot. (How many Skloots can there be?) I don't remember exactly which of his contributions to Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome made such an impression on me that I googled him, but, I had. (I can't look now, the books' at my Los Angeles apartment.)

I read the author bio for Laura Hillenbrand which mostly lists all the accolades for Seabiscuit and reminds you that it was made into a Academy Award nominated movie. It mentions her charity work. And it mentions her New Yorker article "A Sudden Illness" won the 2004 National Magazine Award. It doesn't mention CFS. It's on a need to know basis, really, isn't it? Her fatigued fan base knows what the "sudden illness" is. And we know why the advanced review is from Rebecca Skloot, what same circle they are in.

So far Unbroken is a joy to read but at the pace I'm going I know I won't be done by Christmas, which is good. I'll have it to read on the plane ride home. If only Kindle gave discounts for books if you could prove you already owned a hard copy. Oh well. I will carry this heavy book onto a plane with me.

I'm drinking delicious Throat Comfort tea now, hoping it will help my broken sore throat. It's hard because I've been singing so much lately, before the sore throats, that is. I'm used to singing every chance I am alone. Every shower, every car ride. Sometimes, elevators. The last year and a half though I have been too tired to sing at all. Too tired to sing! It isn't easy, alone in my apartment, to listen to my favorite songs and keep quiet. But it's not like I have a choice. My lungs are heavy. My voice is small. And if I dare to try, I have to give up after a few lines.

As I've noted previously though, November was a good month. One day maybe during the third week, I sat down at my desk in my swivel chair and drank two cups of heavily caffeinated chocolate tea with every intention to write 3,000 words to catch up for NaNoWriMo. I didn't get a word written though. I played a song that was in my head, and realized I had more than enough energy to sing along, and loud. And that was what I did for the next hour. I sat in my swivel chair and swiveled around and sang along for a whole delirious hour.

Less than a week later, sore throat, coughing, congestion, fever. And I think, it always seems like whenever I sing too much I get sick. And it makes me sad because I don't want to stop singing. I've been noticing this possible pattern for years now. And only this time did it occur to me, maybe it wasn't the singing that caused me to get sick, maybe I was singing because I was sick.

In almost every beginning children's piano book there will be an arrangement of a Tarantella. There was in two of mine. And they will say that it was a dance the Italian villagers did when they were bit by tarantulas to try and sweat the poison out of their system. Later I heard somewhere that it was actually the poison that made them go crazy and compelled them to dance. I thought I should get my facts straight before I blogged about it, but my Wikipedia research was inconclusive. The main article on Tarantella said it was both, the bite caused a hysterical condition called "Tarantnism" "the symptoms of which were an irresistible need for a wild and rapid whirling motion bringing the victim to the point of exhaustion. For a long time, the local population believed that the only way to suppress the symptoms and to cure the bite was by using a very rhythmic and fast music."

But when I click on "Tarantintism", the wiki-authors caution that there are strong suggestions that "there is no organic cause for the heightened excitability and restlessness and that gripped the victims." And that "The phenomenon of tarantism is consistent with mass psychogenic illness."

I get annoyed and stop reading.

a poor go-to-sleeper

Going through my old journals last night around 3am. Found this quote I copied from about two years ago when I was reading Vladimir Nabokov's memoir. I liked it so much I typed it all out:

All my life I have been a poor go-to-sleeper. People in trains, who lay their newspaper aside, fold their silly arms, and immediately, with an offensive familiarity of demeanor, start snoring, amaze me as much as the uninhibited chap who cozily defecates in the presence of a chatty tubber, or participates in huge demonstration, or joins some union in order to dissolve in it. Sleep is the most moronic fraternity in the world, with the heavies dues and the crudest rituals. It is a mental torture I find debasing. The strain and drain of composition often force me, alas, to swallow a strong pill that gives me an hour or two of frightful nightmares or even to accept the comic relief of a midday snooze, the way a senile rake might totter, to the nearest euthanasium; but I simply cannot get used to the nightly betrayal of reason, humanity, genius. No matter how great my weariness, the wrench of parting with consciousness is unspeakably repulsive to me. I loathe Somnus, that black-masked herdsman binding me to the block; and if in the course of years, with the approach of a far more thorough and still more risible disintegration, which nowanights, I confess, detracts much from the routine terrors of sleep, I have grown so accustomed to my bedtime ordeal as almost to swagger while the familiar ax is coming out of its great velvet-lined double-base case, initially I had no such comfort or defense; I had nothing-except one token light in the potentially refulgent chandelier of Mademoiselle's bedroom, whose door, by our family doctor's decree (I salute you, Dr. Sokolov!) remained slightly ajar. Its vertical line of lambency (Which a child's tears could transform into dazzling rays of compassion) was something I could cling to, since in absolute darkness my head would swim and my mind melt in a travesty of the death struggle.

Joint Hypermobility

I was excited to see this article by Maija Haavisto about Joint Hypermobility and CFS/ME. It's the first time I've seen them mentioned together, and I've been wondering about it for awhile.

About five years ago my left shoulder started making loud snapping and clicking noises whenever I moved it. Like my shoulder blade was smacking against my ribs. It was weird. My doctor also said it was weird and referred me to an orthopedic doctor. It was a long drive but I was worried my arm was going to fall off soon, so I went.

I read baseball magazines in the exam room while I waited for the doctor. That's all there was and they were everywhere. I picked one that had an article about the Cleveland Indians on the cover, it made me feel at home.

He came in and I lay down on the table and he put one hand on my shoulder and one on my wrist and moved my arm around to test the range of motion. Apparently he was impressed.

"Look at that! Do you play softball?"

"I did when I was a kid."

"Were you a pitcher? I bet you could throw really hard. See how far your arm comes back?"

"That's far?"

"Yes!"

"Well, I guess I threw pretty hard..."

"I wish mine went back that far! Were you always flexible as a kid? Double jointed?"

"No not at all! I was always the least flexible person in my dance class. I tried so hard to stretch every day but..."

"Usually this kind of injury happens to people who are hyperflexible."

"Well that's not me. Is there anything I can do about it?"

He said he'd write me a prescription for physical therapy which helped a high percentage of the time. There was also a surgery option but I didn't want to think about it yet. At the time it wasn't very painful.

He gave me a printout briefly explaining my diagnosis of "hypermobility" It said it usually happened to athletes and the elderly.

"So how did it happen to me?"

"I don't know. Why do you have blonde hair and I have brown?"

I asked if it could have anything to do with my CFS, maybe poor circulation, but he waved me off. "No! How could this have anything to do with CFS?"

I thought about asking, "Do you know what CFS is?" but didn't bother.

I never used my prescription for physical therapy. I told him I was at USC, and he told me to go to one of the sports physical therapists there. This made no sense to me. Whatever treatment I got would really for people who had "injuries" as in, you could remember a specific time when you injured it. This had happened gradually and with no outside cause, so I wasn't sure if physical therapy could help any. I was convinced it was some kind of insidious symptom of the CFS.

Now I'm fortunate enough to be working with a physical therapist in my neighborhood who's been through CFS. The click is still there but it's gotten a little better, along with the pain and soreness.

When I got really bad, when I couldn't eat and stayed in bed all the time, all of my joints clicked, my other shoulders, my elbows, my knees, my hips, my neck, and finally I could feel individual vertebrae clicking in my spine when I stood up. It freaked me out. Thank god it's gotten a lot better and now it's mostly just my shoulders and elbows. And sometimes the neck, which freaks me out the most. I make a point never to let my head hang backwards, in case it snaps when I pull it up again. It doesn't really hurt, but it's...weird.