Monday, February 21, 2011

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.

Monday, February 7, 2011

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 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.