Tag Archives: me/cfs

Weekend sendoff: Stuck in the sand

Posted on September 24, 2010 by Joey| 5 Comments

Hey look, it’s a new post! That must mean WordPress has behaved for 10 whole minutes in a row. I could believe in miracles.

The blog is still under construction; bugs abound, there’s some typographical stuff I need to hunt down and fix, and I’m also not 100% on the new layout yet. What do you think?

I’m a bit more of a spectator than a participant these days. I’m happy to say there’s been progress on my pet project that I’m very excited about. But as far as other work and projects, I’m in something of a holding pattern. The past couple of months of doctor visits, diagnostic tests, and a roller-coaster of hope for a new and definitive diagnosis has actually left me two steps back, with my CFS doc now convinced I have more of a “CFS Plus,” based on my inexplicable bout of optic neuritis and some other problems that don’t quite fit the profile.

So I’m left with worsening symptoms and even less idea of what’s really wrong with me. Normally I get past these kinds of setbacks relatively quickly, but it’s been tougher this time. Chronic illness is a constantly fluid situation; it’s kind of like standing on a seesaw that someone else is moving up and down, and you learn to adapt to the wobbling, even if you’re caught off balance from time to time. Right now I feel like I got thrown off the seesaw and landed face-first in the sandbox. It’s just sand, so I’ll make it out, but it’s kind of deep, so it might take a while.

In other health news, Paul and I both got our TDaP boosters today. In case you didn’t know, there is a serious outbreak of whooping cough (pertussis) in California right now, from which nine infants have died so far. These babies were too young to be vaccinated, so they were most likely infected by a well-meaning adult with no idea he or she was a carrier. This is scary to me because I consider myself pretty well educated as a layperson when it comes to vaccines, and I had no idea until this year that adults need not just tetanus boosters, but the whole tetanus/diphtheria/pertussis combo. We can’t just write this off to the antivaxxers; this is a serious failing in patient education, to my mind.

But at least Paul and I can now go visit our friends’ adorable new babies, safe in the knowledge that we’re as medically protected as possible from causing them  harm, and that we’ve done our part for herd immunity. On that note I’d like to send you off with this great song about vaccines and how they’ve made life better for us.

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Posted in Blog stuff, CFS, Health, Life, science

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Will there ever be a cure for CFS?

Posted on August 24, 2010 by Joey| 2 Comments

I was asked this question on Formspring by @jwhouk the other day, and I decided it was worthy of a better answer than a few lines on Twitter. Actually, the way he phrased it was

Deep down in your heart of hearts (or whatever you want to call it) — do you believe/think there will ever be a cure for CFS? Or at least an understanding of causes for it?

which I like because I feel more comfortable talking about my beliefs and speculations than the hard science. And then the timing was funny as this story came out yesterday. It’s a report on a study published in the Proceedings of the National Academy of Sciences (PNAS), detailing a replication study seeking XMRV in patients with chronic fatigue syndrome. The PNAS paper had been held for some time, frustrating and angering patients, and now that it’s out, the results are interesting. Although the researchers did not find XMRV, they did find a related family of retroviruses. This isn’t going to end the controversy over XMRV anytime soon — there are many questions remaining about the selection of patient cohorts, why other studies were unable to find XMRV, and so forth — but more information is always good.

This is part of my answer to the question, this fact that right now there is more interest in CFS research than there has been in years. For one thing, this is obviously directly good news for people who want a cure. Even if XMRV or MLV turn out to be complete red herrings, who knows what else may be discovered along the way. And a major side benefit of this research is that more people — physicians and otherwise — learn that CFS is a true somatic problem that warrants research. The disease and the people who have it receive validation, which may lead to better care and further research as well. So these are all positive signs even if there are some very questionable aspects, such as patients starting dangerous treatments for things they don’t even know they have yet.

The problem with CFS is that, although we patients tend to insist on it being treated as a disease, it is not one. It is a syndrome — an association of related symptoms — and those symptoms and their severity differ enormously from person to person. (It’s important to note this does not mean that anyone with a few fatigue-related symptoms has CFS. There are several sets of different but related diagnostic criteria.) Some patients have mostly neurological symptoms, and tend to identify as having ME (myalgic encephalopathy), while others like me exhibit almost exclusively post-viral symptoms. There are endless debates over the name of the syndrome, and whether it should or shouldn’t be lumped together, as it often is, as ME/CFS. This is why I remain skeptical about XMRV: does it really seem possible that a single retrovirus, or even a family of them, could cause such an enormous disparity in etiologies, disease progression, symptoms, and so forth? Possibly in one particular set of patients, but what about everyone else?

So I don’t really envision a vaccine or gene therapy anytime soon or ever that will wipe out CFS, although I do expect better therapies and treatments. I think what is more likely to happen is that as we increase our understanding of various illnesses, especially autoimmune ones, patients formerly diagnosed with CFS will be found to have something else. This happens frequently enough now (although sometimes in the other direction, as in patients with depression who are later found to have CFS as a somatic cause), and there’s no reason to think it won’t continue. As medical science becomes more knowledgeable about autoimmune disorders, demyelinating disorders, and many other related areas, I think CFS patients will continue to be rediagnosed with more specific — and hopefully treatable! — illnesses. In this sense, medicine will “cure” CFS by redefining patients into other categories, and with luck, having no more use for this “garbage can” of a diagnosis.

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Posted in CFS, Health, Random, science

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Newly Nerfed has a birthday

Posted on July 29, 2010 by Joey| 8 Comments

One year ago today, I launched this blog. I’d just been through six months of wondering “What the hell do I do now?” I was paralyzed, demoralized, and utterly frustrated by having had to give in to my disability and quit working. It didn’t help that the job I quit was the best I ever had, but it also didn’t matter. A really big, heavy door had just slammed shut on a really big part of my life, and I was forced to examine my new situation and my new identity.

While beginning to work this out, I dove headlong into the waters I’d only been treading up till then for lack of time and energy. Skeptical blogs and podcasts began to fill my day, and my Twitter stream became more and more populated by other skeptics. I revamped my Facebook page so that I could keep up with the discussions happening there. At first, my appetite was modest, but the more I consumed, the more ravenous I became. (Skepticism as subtraction soup.) I put myself through a serious skeptical bootcamp that was nothing but fascinating, educational, and exciting.

I love to learn, and although I couldn’t work, I could still do that. The skeptical community offered a place for me to do grad-school amounts of reading and synthesizing information, not to mention daily interacting with intimidatingly smart people who wanted to use critical thinking to make the world a better place. It was inspirational, revelatory, and ultimately showed me an alternative to my feelings of helplessness and, worse, uselessness.

I didn’t intend Newly Nerfed to be a skeptical blog. I thought it would focus more on the things I do still write about a lot, disability and chronic illness and nerdy stuff like games and movies. But it proved to be impossible to leave the powerful new focus in my life out of this blog. I connected so strongly to skepticism that I wanted to write about it, even as a neophyte. And the rest can be read in my posts.

When I started this blog, people were talking about TAM 7. Fascinating, I thought, but I couldn’t see myself at that kind of conference. Surely it was for the professors and physicians and scientists I’d been reading, and not for someone like me. And then a year later I was discussing the effects of James Randi’s public and vehement support of science-based medicine during his cancer treatments…with James Randi.

I can’t even begin to express how much TAM 8 meant to me. I had every kind of experience you hear about: meeting “old” friends for the first time, meeting new friends for the first time, having practical discussions, having meta discussions, learning things that are directly applicable to my interests, having my mind blown open by new ideas, meeting heroes and having actual discourse with them, and laying the groundwork for future projects. I came away from TAM wonderfully energized with plans and schemes for the coming year (and with gratitude for the luminaries who kindly allowed me to ambush them with an idea, and for their support of that idea).

A year ago I didn’t know what to do. I held on to my passion for learning, for making a difference, and for writing, none of which got hit by the nerf bat. And then I found myself in a community of people who shared those passions, and I’ve started to find my way. I am so grateful for this year and the incredible people I’ve met and worked with (and will work with in the future). I thank all of you so much, skeptics and believers, friends and strangers, for helping, teaching, and of course entertaining me so damn much this year. I especially want to thank “Surly” Amy Davis Roth and Desiree Schell for their early encouragement of an avid but nervous noob, and Daniel Loxton for being a role model of skeptical communication to which I continue to aspire.

Most importantly, I thank my husband Paul. Not a single step on this wonderful journey would have been possible without his love, care, and support. Throughout everything from health woes to skeptical successes, he has been unswervingly by my side, which I assure you is not always an easy place to be. None of what I’ve experienced, learned, or accomplished this year means anything without the joy I take in having my best friend and twu wuv to share it with. He challenges me to be better, and accepts me when I fail. And I mean, he’s a skeptical atheist gamer geek who can kick serious ass in meatspace — did I win the lottery or what?

Here’s to sticking around for year two. I appreciate it.

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Posted in Blog stuff, Disability, Geek stuff, Health, Life, skepticism

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