Guest Post, pt. 2: Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?

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This is Part Two of a post on myalgic encephalomyelitis/chronic fatigue syndrome — or just ME/CFS — which is a disease that 1) knocks people right out of the game and 2) doctors can help with (though not as well as one would like). But most doctors haven’t a clue, often even viewing the illness as psychosomatic and untreatable.  Part One was yesterday, and it left off puzzling about why doctors are so unknowledgeable.

dr klimas explainingReading about the history of the illness made the situation seem far less inscrutable. The Centers for Disease Control and Prevention first investigated it in the mid-1980s, when a few hundred people near Lake Tahoe suddenly got symptoms much like mine. A couple of doctors documented abnormalities, also much like mine, and noted that the malady fit the profile of myalgic encephalomyelitis (ME), an illness that had cropped up sporadically for decades.

Purported epidemics usually turn out to be nothing more than coincidences, though, and CDC investigators found the abnormalities peculiar and the symptoms suspiciously diverse. They performed a quick investigation and wrote up a report downplaying the illness. But concern continued to grow, and a manuscript outlining the abnormalities was being prepared for the Annals of Internal Medicine. So investigators created a definition for the illness, but they kept it broad, disregarding the specific findings and requiring six months of fatigue along with several picks from a grab-bag of other subjective symptoms, like sore throat, swollen lymph nodes, and brain fog. They named it “chronic fatigue syndrome,” and they tacitly subsumed myalgic encephalomyelitis within this new illness (which the federal agencies now often call ME/CFS).

With such a broad definition, CFS suddenly applied to widely varying patients with few shared abnormalities. As a result, many doctors came to view the CFS grab-bag as a psychosomatic illness. The triviality of the name “chronic fatigue syndrome” reinforced the skepticism. After all, aren’t we all tired? The name makes the illness that made it nearly impossible for me to stand up or talk or do my job sound very much like the everyday tiredness most folks push through.

Enough good science would dispel this notion, but the illness hasn’t easily yielded its secrets. Continue reading

Guest Post, pt. 1: Why Are Doctors Skeptical & Unhelpful about Chronic Fatigue Syndrome?

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Jen after a day of shooting

Eight years ago, collapsed on a neurologist’s examining table, I asked a naive question that turned out to be at the center of a controversy continuing to this day. I had just received a diagnosis for the illness that had been gradually overtaking me for the previous six years, and I asked, “So what is chronic fatigue syndrome?”

A week earlier, I’d woken up suddenly barely able to walk. “Fatigue” hardly described what I felt: “Paralysis” was more like it. My legs seemed to have been amputated and replaced with tubes of liquid concrete, and just shifting them on the table made me grunt like an Olympic weightlifter. Not only that, my very bones hurt. Most disturbingly, my brain felt like a swollen mass. Speaking required tracking down and spearing each word individually as it scampered away from me. I felt as capable of writing an article about science – my job – as of slaughtering a rhino with my teeth.

My neurologist’s face was blank as he pronounced, “We don’t understand it very well.” He could recommend no tests, no treatments, no other doctors. I came to understand that for him, “chronic fatigue syndrome” meant “I can’t help you.” Continue reading

How losing my smart phone made me smarter

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SmartPhoneshutterstock_128808976

A few weekends ago, I hiked a deep canyon with a couple of friends. As has become my habit, I toted my smart phone along. I set it to mute so that I’d remain undisturbed by pings and rings, and I pulled it out of my pack only to take a few photos.

After the hike, my friend drove us back to our carpool spot, and after changing out of my hiking shoes, I reached for my phone to call my husband. Except it wasn’t there. It wasn’t in the front pocket of my pack, or anywhere else I looked.

Panic. Was it in my friend’s car? Or had I dropped it somewhere in the canyon? I reached to call the friend, who was now five minutes down the road in the other direction, but — oh right. I’d have to call her when I got home. Wait, did I know her number? No, I did not. It’s programmed into my phone. I probably added it to my contacts via email, never once dialing it.

A sense of doom set in, as I thought about all the other information I’d offloaded from my brain to that shiny glass rectangle. But the despair was quickly followed by a sense of release. I was suddenly free from obligation. I couldn’t check messages. No one could reach me. I was untethered. Continue reading

Redux: How I learned to stop worrying and love the radioactive spiderwebs

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This was first published on December 23, 2011.  But microbes seem hot these days so we hope this will add to your knowledge about their manifold hotnesses — which apparently encompass radioactivity (hot? get it?) and spiders. Maybe not spiders.  Anyway, the post is now, somewhat reliably, UPDATED.

Last week, the Augusta Chronicle reported that a whitish, spider-web like material had been found growing all over the nuclear waste at the Savannah River Site, a Department of Energy lab in South Carolina. In the 1950s, nuclear materials were readied here for weapons deployment. Now the site is a research lab. The web-like strands were found in the L Basin, where the spent nuclear fuel is stored.

Unlike the term suggests, however, “spent” nuclear fuel is actually so irradiated that it can no longer be reliably used. So it needs to be contained in vast pools of cooling water usually doped with boron, which acts as a protective measure against the fuel rods’ radiation. The assemblies themselves, however, remain furiously hot.

This makes the prospect of any living thing growing not just near them but directly on them incredibly exciting. It’s not yet clear whether the stuff is actually alive, however. In late January, the Defense Nuclear Facilities Safety Board will start the process of testing the growths to see whether they are biological. Could these be microbes? Better yet, could these cobwebs be the home of some awesome new breed of radioactive superspider? Continue reading

The Last Word

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Suitsu_jõgi_MatsalusApril 14 – 18

Our boy, Abstruse Goose, becomes as one with his electronic devices.  Truer than he knows.  Well.  I don’t know what he knows.  Truer than you might think, anyway.

Poor Jessa, age 35, thinking about losing her math abilities.  And yes, mathematicians do have the reputation of topping out young.  But Jessa, you’ve got a long way to go before you hit Downhill.

Spring is auction season, everything has its price; and jump-bidders and snipers, Cameron’s got your number.  Turns out auction fever goes better with a little wine.

The kid who won an Olympic gold for Russia was — as is Michelle — from White Salmon.  And what did White Salmon do about this? asked for his autograph.

Cassie finally finds a simple declarative unqualified sentence she can write about medicine — colon cancer screening saves lives — then, sorry, nope, not even that.

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Photo by Abrget47j, via Wikimedia Commons.  It’s unrelated to any post, but it was just so beautiful.

 

Colon Cancer Screening Saves Lives?

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8158888029_3d071d3fde_b“Colon cancer screening saves lives.” That’s how I began my latest article for Nature Medicine. The news story was about new non-invasive tests that aim to make screening a lot more pleasant. The lead wasn’t great. You could probably find a dozen other stories that begin the same way. But it at least seemed solid. Science is all about qualifiers and caveats, and I was delighted that, for once, I didn’t have to add an “appears to” or a “perhaps.”

When I fact checked the article, I didn’t really stop to question that line. Colon cancer screening saves lives. Of course it does. If it didn’t, we wouldn’t devote time and money to screening. Duh.

But then a few days ago I received an email from a reader. “I am puzzled by your opening statement in your recent Nature Medicine article, that colorectal screening saves lives,” she wrote. And then she quoted the National Cancer Institute: “Based on solid evidence, screening for colorectal cancer (CRC) reduces CRC mortality, but there is little evidence that it reduces all-cause mortality, possibly because of an observed increase in other causes of death.” Continue reading

A Hometown Hero, A Foreign Flag

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Vladimir_Putin_and_Vic_Wild_24_February_2014Last Saturday, my daughter and I went to the opening day of Little League season. In our small town of White Salmon, Washington, it’s a day for classic Americana: The players chase their coaches around the bases, the Boy Scouts raise the Stars and Stripes, we sing the Star-Spangled Banner, and a local celebrity throws the first pitch.

This year the pitcher was Vic Wild, a White Salmon native who won two gold medals in snowboarding in Sochi. When the announcer called his name, Wild, in dark sunglasses and a flannel shirt, jogged to the pitcher’s mound. He grinned and shrugged, then wound up and let loose a pretty good pitch. The crowd went crazy.

What nobody mentioned—not the announcer, not the kids, not the smiling parents—was that Wild, who graduated from the local high school and trained on nearby Mt. Hood, didn’t win his double gold for Team USA. He won it for Russia, and there are photos of him with Vladimir Putin to prove it.

How did our town come to celebrate a Russian champion? Continue reading

Going Once, Going Twice

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423286736_06177b6366_zSpring is in the air, and with it comes the cha-ching of candy-bar sales. Of jogathons. Of hordes of students (and their parents) trying to raise money for books, for field trips, for the art program that’s on the chopping block, for scholarships.

In some places there are also auctions. Here, we have themed auctions where you dress as gypsies and aging rock stars. We have silent auctions, in which you hover around sheets of paper in front of gift baskets, writing down your bid. We have live auctions, where you—well, I’ve never been to one, but I imagine people start by demurely raising numbers into the air and then, as the night wears on, hollering uncontrollably at the auctioneer. This isn’t Sotheby’s, after all. This is preschool. Continue reading