No Poster Girl

An old friend asked me recently, “I still don’t really know the depths of how bad you can feel. What are most days like?” Here’s my answer.

Maybe this will give you some insight: Most of the time I lie here on the couch and can read on the computer most of the day. Only on an extraordinarily good day can I hold a book or magazine to read. That doesn’t happen often. Most days I can watch a little video, but it’s rare that I can watch video long enough to get through something like an episode of 30 Rock.

I can chat with Chimp, but I can’t talk on the phone often. It’s too tiring. I can’t sing any more, either. It takes too much energy, and my muscles (which includes the diaphragm) are too wasted to give me good breath support for singing.

I can walk from my bed at night to my dayroom (about 20 feet) in the morning and back to my bed at night. Right now, after my Christmas Eve crash, I’m mostly not walking to the bathroom. Only if I’m having a really good day, which I haven’t been lately, can I walk out to the living room. I have never seen the guest room upstairs in person. I have been upstairs four or five times in the year and a half I’ve lived here. I have thought about buying a stair lift.

I can sit up for five minutes, but I can stand only for a minute or so. I have very low cardiac output, and if I stand, my heart can’t pump the blood out of my feet…it all starts to settle there and feels very painful very quickly.

Some days I can type a bit – most days enough for a short email, but not enough to write a long email.

As for what it feels like in general to have ME/CFS, imagine having the body aches and general sense of feeling really sick that you do when you have the flu, and add to that the dizziness and mental dullness of a hangover, and the overwhelming tiredness of only sleeping a couple hours in a couple days. That’s what I feel like all the time, even on my best day.

This question & answer moved over from my formspring account. This question was  originally asked in December 2010.

If you woke up one morning to find yourself miraculously healed, what would you do?

The first thing I’d do would be run upstairs and, uh, tell Chimp (I’ve only been upstairs three or four times, I think, and I’ve never seen the guest room in person). After I got done with that, I’d run back downstairs, dig out my workout clothes, pull on my running shoes, and go outside for a run to explore our neighborhood. (I lost my ability to work out immediately on becoming ill. The last time I walked a mile was in 2004, and it took me 25 minutes.)

After a 45-minute or so run, I’d grab a shower (standing up, rather than a bath sitting down, and without needing Chimp’s help to wash my hair), get dressed (in clothes other than loose-fitting pajamas), and make myself some breakfast (not kefir, which I drink by Dr. Cheney’s direction, and which I vigorously dislike). Maybe I’d have oatmeal with raisins and brown sugar, maybe some shredded wheat with soymilk and bananas. At this point I’d call my folks and Chimp’s folks and tell them I was well.

Then I’d go sit down (sitting up!) at the computer for a couple hours, update my resume, write a cover letter, and send it out to everyone I know whom I reasonably could.

I’d round Chimp up and take him out to lunch somewhere in Pittsburgh. I would drive. (I always loved to drive.) Then we would trawl the vintage and thrift shops all afternoon, looking for stuff for the house and vintage clothing for me. I’d be primarily after the 1940s-1960s women’s suits I always loved to wear to the office.

In the late afternoon, we’d stop by Whole Foods and buy stuff to make for dinner. Back at home, I’d turn on some music (not needing to worry any more about it wearing me out) and prep and cook dinner for the first time since 2007. We’d sit at the table and eat together (instead of me eating in my dayroom, lying down). I’d call my best friends to tell them the good news (it’s been years since I could manage phone conversations) and I’d make plans to come out to Virginia and Maryland (last time I was in Virginia, where I grew up, was 2006; Maryland, where Chimp’s folks live, 2003).

We’d break out a movie (since I would be able to watch video for more than a few minutes at a time), snuggle up together on the couch and watch it. When it was time to go to sleep, we’d get in bed together (because of how much trouble I have sleeping, we haven’t been able to share a bed since 2005).

If all that sounds like a pretty normal Saturday to you, there’s a reason for that. I don’t want to be a triathlete or anything – it really would be miraculous, just to have what others would term a normal day.

This question & answer moved over from my formspring account. This question was  originally asked in September 2010.

Do you know how you got it, if it is a retrovirus? If it’s too personal for you to discuss it, say so.

We moved to CA in August 2003, and the first six months we were there I kept getting colds and sore throats. People there said, “Welcome to the Valley,” meaning they thought the pollution of the San Joaquin Valley was hard on my system. My illness started with something that seemed like food poisoning (but was accompanied by violent shaking and sweats) in April 2004, but I got quite ill moments after a flu shot in December 2003, and was very sick and tired for two weeks afterward. I’ve always wondered if the shot could have been contaminated. Nobody else at my office got sick from the shot, though. A month after the “food poisoning” incident, I was standing in our kitchen chopping carrots – it was May 29, 2004, at 5:45 p.m. – and it was if a huge wave hit me from behind and instantly sucked all the energy out of me – and the energy has never returned. That was my first “crash,” as they’re called.

Even before there was any information about what the illness was, I wondered if I could have picked something up from the roof rat infestation in our Fresno apartment building. It was pretty severe, not to mention gross (but the cats really enjoyed watching them). There were no rats in our actual apartment, but they overran our attic, patio and garage because our slovenly next-door neighbors left their trash out on their patio. I don’t mean they left bags or cans of trash out there – they just threw their trash out their back door and let it pile up.

Anyway, just today (9/24/2010), I found an abstract from the recent 1st Int’l Workshop on XMRV titled “Wild derived mouse as a small animal model for XMRV infection.” It says that standard lab mice “cannot support XMRV infection,” but Gairdener’s Shrew-mouse can. So my wild theory that I got it from the roof rats lives once more.

Chimp and I will both probably be tested for it this year (we are waiting on the release of a particular assay Dr. Cheney wants to be used). I assume Chimp will be positive too, but we will probably never know where it came from, whether I got it from him, somewhere else, or had had it for years and it just became active somehow. We have no idea. Nobody even knows how it is transmitted yet. What’s alarming is that one German study found XMRV in nasal secretions. The studies done thus far have found it in 4-7% of controls. We don’t know if it’s more transmissible than HIV, but it seems possible.

This question & answer moved over from my formspring account. This question was  originally asked in September 2010.

Now that there’s a (somewhat) official name, what is happening with treatment?

There’s already been some in vitro testing in which AZT was found to inhibit XMRV. Raltegravir and tenofovir have also been found to inhibit it.

There has been talk (mostly talk) at this point of clinical trials. There are antiretrovirals approved for human use but not useful for HIV; those will likely get tested in vitro too.

A physician, Dr. Jamie Deckoff-Jones, and her daughter Ali have been taking AZT and raltegravir since March 2010. Dr. Deckoff-Jones is keeping a blog here: http://treatingxmrv.blogspot.com

They seem to have shown remarkable improvement. However, Dr. Deckoff-Jones did say in one entry that she knew of other patients also trying the regimen who were not improving.

Anyhow, two people does not a trial make, and I hope there will be some soon. Even if known, already available drugs can inhibit gammaretroviruses, we don’t know what that will mean in terms of symptom relief, and we also don’t know how people with this illness will handle antiretrovirals. They’re potent stuff.

This question & answer moved over from my formspring account.

What are the differences between CFS (or GRV?) and fibromyalgia?

I’m not an expert on this; I have ME/CFS, but not fibro, so I’ve read far less about the latter.

In practice, it seems like if you have mostly pain, it’s fibro, if you have mostly exhaustion, it’s CFS. But now that we potentially have a pathogen identified, I’ll be very interested to see what is discovered about the prevalence of retroviruses in fibro patients. Maybe they’re two separate things; maybe they’re just different presentations.

This question & answer moved over from my formspring account.

So what’s the alphabet soup of your disease about? There are a lot of names.

There are. Let’s work backward, shall we?

The most recent positive paper (Alter/Lo) found the presence of “P viruses” – retroviruses in the family called Murine Leukemia Virus-related viruses. Alter and Lo apparently did a slightly different test than the previous study.

The previous study (Mikovits, et al) had found “X viruses” – XMRV – which is also a member of the MLV-related family.

Both are gammaretroviruses.

Now, going back another step:

The name “Chronic Fatigue Syndrome” was coined in 1988 by a panel at the CDC. In the U.S., the illness is thought to have emerged in the 1980s in several outbreaks, including Incline Village, NV and Lyndonville, NY. There is an entire book about this very much in the vein of And the Band Played On called Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.

But the illness already had a name: It’d been called myalgic encephalomyelitis (meaning pain and inflammation of the brain and spinal cord) in England since a major outbreak at the Royal Free Hospital in London in the mid-1950s, where it struck a number of doctors and nurses. It was also called Royal Free Disease.

Now, what will it be called going forward? There are a number of suggestions floating around: If it’s not all caused by XMRV, but multiple MLV-family viruses, will we call each by its name? Will we just call them gammaretrovirus, GRV for short? That’s what my doctor, Paul Cheney, is calling it right now, and I’m inclined to go along.