Retrovirus XMRV in Chronic Fatigue Syndrome

Okay, I haven't blogged in almost two years nor replied to almost any e-mails.  Yes, I am still alive.  Here are links to some big news in research on chronic fatigue syndrome.

This could be about as big as the discovery of HIV, in fact, as one of now three known infectious human retroviruses.  However, maybe I'd like to hope to be in the small percentage of patients without this virus since having something else might be better than having a retrovirus that can't be gotten rid of and probably causes cancer as well.  Although other viral causes probably cause cancer as well, but maybe they're better than retroviruses, who knows?

I think chronic fatigue syndrome has rarely been covered by journals of the caliber of Science and Nature.

Science Research Journals/Sites

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome
http://www.sciencemag.org/cgi/content/abstract/1179052
(full article is accessible from university domain)

Virus linked to chronic fatigue syndrome
http://www.nature.com/news/2009/091008/full/news.2009.983.html

Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome
http://www.nih.gov/news/health/oct2009/nci-08.htm

Popular Science Magazines

Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis
http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus

Major News Media

Virus Is Found in Many With Chronic Fatigue Syndrome
http://www.nytimes.com/2009/10/09/health/research/09virus.html

Cancer-Causing Virus Linked to Chronic Fatigue
http://online.wsj.com/article/SB125501227713473525.html
(subscription article is accessible if you search and go through Google News)

Virus discovery called breakthrough in fight against chronic fatigue syndrome
http://www.latimes.com/news/nationworld/nation/la-sci-fatigue9-2009oct09,0,3368993.story

Study isolates virus in chronic fatigue sufferers
http://www.reuters.com/article/latestCrisis/idUSN08539703

Virus Linked To Chronic Fatigue Syndrome
http://www.npr.org/templates/story/story.php?storyId=113613955

Big Pus Ball Theory of Chronic Fatigue Syndrome

I'm figuring out that the symptoms of chronic fatigue syndrome and fibromyalgia are caused by the body being turned into something like a huge pus ball. Okay, maybe not pus but lymph or something, but that just sounded amusing. Or painful. Because yeah, that's where the fibromyalgia pain seems to be coming from- massive ballooning of fluid all over the body, backing up every part of the circulatory system, stretching and ripping things.

A big pus ball kind of fits into the picture of the yet to be completed Stanford study suggesting that the body is being overrun by viruses. There are two seemingly random things I came across CFS researchers observing and finding strange, so I made a mental note- one that CFS patients consistently had reduced range of motion across the body, and the other that pain and stiffness tended to be located in the left shoulder and chest area. I have to go back and find these references, but they all fit into the puzzle pretty amazingly. A limp balloon is very flexible but a blown up balloon is not.

The big pus ball has been draining ever so incrementally since January. More recently, there's been very clear draining sensations from the brain, in the head, in the sinuses, down the neck, as well as surges of fluid which sometimes hurt and make me hope that nothing pops, rips, or gets stuck in my brain. Sometimes they're followed immediately by perceived changes in brain function, mood, and temperament. And yeah, I'm feeling a bit better, as shown by the slew of blog posts in the last week. My head is deflating. No wonder there are cognitive and psychiatric symptoms associated with the illness.

The PCP has checked in with a message for an update, though I haven't yet replied. Not sure if he has a point since he doesn't offer anything except maybe to see if I've decided to admit that it's time to look into anxiety. After he spoke with the Stanford doctor, he's had less wiggle room and so just doesn't say anything, but doesn't actually admit that I have chronic fatigue syndrome. If I tried to ask for treatment that simply falls into the guidelines for treatment of CFS established by the medical authorities, it would be like pulling teeth. So I get the feeling that he still can't think of anything but anxiety.

I'm actually very surprised that CFS researchers have managed to get the medical authorities to publish guidelines for diagnosis and treatment. Unfortunately it's nearly impossible to find a practicing doctor who actually accepts and uses the guidelines, especially ones that are not considered to be quacks. Interestingly, the quacks actually for the most part follow the standard treatment guidelines, aside from their untested theories on microbial treatment. I've gone through the list of recommended doctors from a large CFS organization and not a single one of them was to be found in my insurance network directory which is probably one of the largest in the country. Google-searching shows that most of them would also be considered quacks by the rest. While perusing Web forums and blogs and asking people who their doctors are, it incredibly seems to come down to about one dozen doctors across the entire country, who both treat CFS and have some respectability in the medical profession. People wait years on waiting lists and travel out of state to get treatment.

I'm wondering if I described how the color of my blood has changed from rusty orange brown, to brownish purple, to creamy dark purple, and then a more normal red though still strangely creamy, correlated with improvement in symptoms, if the PCP and everyone else who thinks CFS is anxiety and stress can still be stuck on that. Does anxiety cause rusty orange blood and ballooning of the body in the absence of perceived anxiety? Maybe. But really?

Two Pieces of Lettuce

My theory on why people don't get what it means to not be able to do anything except eat and shower (and occasionally spend a few minutes surfing the Web or blogging), is related to how people on a diet say they only ate two pieces of lettuce for lunch and that's the only thing they ate all day. Meaning they also ate two bowls of ice cream for dessert and a piece of pie. Or they had chips and several sodas between meals. And some cookies. Which is a whole lot different from actually eating only two pieces of lettuce in a day.

In everyday parlance, sometimes people say they haven't done anything all day or all week, but really, not doing anything actually means, they went to work, ran errands, cooked, ate, showered, sat around, talked on the phone, read some magazines, surfed the Web, painted their toenails, watched TV, listened to music, paid bills, and did yoga.

Not being able to do anything except eat and shower, in the context of describing illness or disability, is literal. Ie. eat, shower, and nothing else. Scratch out all the stuff in between. Not comprehending the literal meaning, is a perplexing case of not being able to imagine the literal meaning because one is putting too much imagined stuff around the words being communicated.

In addition, the description of lying in bed doing nothing. Sometimes people mean they were actually lying in bed watching TV, movies, reading books and magazines, listening to music or radio, and sitting in bed typing on their laptops. So much that people almost never imagine what it literally means.

So when trying to explain to the GP, I tried explaining many times that I meant completely literally and adding "like a 90-year old in a nursing home," but that still didn't work, because he wasn't taking it literally nor imagining a 90-year old in a nursing home. I think some of the CFS disability assessment forms that I sent him finally helped a little. They spell it out a little more, like itemizing some of the basic things the person can not do, except that it's not possible to spell out every infinite item that a person can and can not do.

I'm confusing myself as to whether the misunderstandings are caused by too much or too little imagination. I'm concluding that the imagined extras are not actually due to imagination, but due to assumptions. And assumptions are often due to lack of imagination.

Doctor Demographics

I've been to see many doctors during the last year, and I wonder why all of them are men, and most are men around 60 years of age. Aren't medical schools graduating about half and half, male and female these days? Though I suppose, if most of the doctors I've seen are around 60 years old, then most would be men.

So here are some interesting statistics. Apparently only about a quarter of working doctors are women. But still, all the doctors I've seen are men, in contrast to knowing so many women in medical school, residents, etc.

And a lot of 60 year old male doctors really do think that if you're a 30-ish female, especially single, highly educated, and working (since working is a male thing, and women need a man to be sane), that you must be extremely neurotic. ("Do you have a boyfriend?" should not be part of medical history taking.)

Or maybe they just think that chronic fatigue syndrome is neurotic, like this one doctor describes how other doctors reported back to her that all her patients were neurotic:

From Skepticism to Science: After 20 years, chronic fatigue syndrome may finally be getting some respect and cutting-edge science

Lost In Translation

Me:

"I've been pretty much bedridden 16-20 hours per day and housebound since August."

"I barely manage to eat and shower every day. (Though I do blog sometimes.)"

People:

"Do you want to go on a hike? We can come pick you up."

"Do you want to go out for dinner? A movie?"

"We're going to Maker Fair in San Mateo, if you're interested in going too."

Me:

Sigh.


Hiking... if people want to carry me in a bed while making sure there is not a single tick within a mile of me, sure!

Apparently, there is still a lot of work needed on my descriptions, and I haven't seen anyone be able to describe chronic fatigue syndrome in a way that is anywhere close to comprehensible to other people. Which makes me wonder if it is something that is even describable in words.

Chronic Fatigue Syndrome Awareness Campaign

Apparently, I'm having post-exertional malaise from cleaning out fish sauce and hauling the bottles to the dumpster two days ago. So I spent most of the day in bed, pretty much waiting all day until I had enough energy to type something here. However, it's not quite as bad as it was a few months ago, which I describe as, even if I had been starving in bed I would not have been able to get up and go out and acquire some food to eat, assuming money falling from sky, of course. I've read another person's description as, even if the building were burning down, she could not have gotten out of bed. Yes, this is really hard to imagine if you don't experience it yourself. It's one of those things where in order to understand, I wish people could experience it, yet it's really not something you'd want to wish on anyone.

The CDC and CFIDS Association have partnered up for an educational campaign. They have a pretty informative Web site: Provider Education Project and the CDC site on Chronic Fatigue Syndrome.

However, as far as the Awareness Campaign, I don't know who it's reaching. The people who are looking for the information are already aware. The people who need awareness are the ones who would pass over learning about it even if the information fell in their laps. Who is this Awareness Campaign reaching, if in San Mateo County, between world-class UCSF and Stanford medical centers, one of the wealthiest and most highly educated regions in the world, and one of the most progressive supposedly... if I can go to twenty doctors in various specialties and hardly a one even recognizes this thing exists? The old-minded ones (who aren't quite used to women being in the work-world yet) say it's anxiety, stress, or psychosomatic. That's a pretty "interesting" conclusion, because when you think about it, that's an even more nebulous mechanism of causing physical symptoms than what the same people would call hokey in alternative medicine explanations of energy flow, meridians, trigger points, and whatnot.

So I wonder what would happen if, in response to my PCP saying to please let him know if there's anything else he can do to help, I suggested learning about Chronic Fatigue Syndrome, even if he doesn't believe in the Lyme disease stuff. Doctors don't like to be told things.

What's better, a doctor (or any person) who is dumb and nice, or one who is smart and not-so-good a person? My mom says that people who really are nice and caring won't be that dumb, and people who are not-so-good people won't really be that smart. Hm... but in the case of a sick person seeking treatment from a doctor, which would be more effective? Neither? If a dumb person really cared enough, could he find a way to solve a problem with endless effort? On the other hand, does dealing with some smarter people require navigating Jekyll and Hyde?

I really haven't come across many doctors if any (excepting sisters of course) who are both really smart and really caring. There may be some luck involved there. I still have to share the story of the Stanford pre-med who tried to put out a fire with a paper towel. That's also the story of how I saved the Chem building from burning down, hehe. Next time you go to see a doctor, even a Stanford or Harvard educated one, consider the fact that even with that stamp, they might try to put out fires with paper towels. Scary.

Today is a record day for comments from new commenters. I was especially amused that I got an answer to my chemistry question. Yay!