There’s been a lot of buzz over the past week about a study published in the Journal of Chronic Fatigue Syndrome that suggests treating fibromyalgia and ME/CFS with cortisol (a steroid), based on the fact that most patients have low cortisol levels. I do not have access to that publication, but would like to point out some concerns.

First, most of the reports are not clear about the fact that this was a literature study, rather than a controlled clinical study.

Second, while at least one story did claim that the literature study was followed up with an “observational study” in which all of the FMS/CFS/ME patients in a particular clinic were given cortisol. That does not meet the standards of a controlled, clinical study, which would require an untreated control group and a group receiving placebos instead of cortisol.

There have been multiple clinical studies of the effects of steroids on FMS/CFS/ME. I found records of studies of prednisone and hydrocortisone, in particular. Those studies did not find any positive effects from treatment compared to placebos, and in some cases there were significant problems resulting from the treatments. I did not find a study specifically involving cortisol, but I don’t know if that’s because there hasn’t been one or because I don’t have access to the appropriate databases. (I’m sure there are more studies out there, but I don’t have access to Medline.)

I’d strongly suggest waiting for the results of repeatable, controlled clinical tests of cortisol before trying steroid treatment. Steroids have serious side effects, and should not be taken lightly.

This isn’t where I usually get geeky, but I think this utility might be useful to many readers.

I get notices from the Giveaway of the Day and Game Giveaway Of the Day sites each day as to what they have available that day. They make arrangements with various software publishers to distribute commercial software absolutely free in return for advertising. The catch is that the software must be downloaded and installed within the 24-hour period of the giveaway.

I’ve been watching the site for a year or so, I think, and have downloaded and tried quite a few pieces of software. I’ve never found any malware in any of them, although I believe I’ve read mention of people getting unwanted software installed in a bundle because they didn’t pay enough attention to what they were agreeing to during an install.

Getting back to my point, today’s giveaway is a nifty utility that will magnify a portion of your computer’s screen, enabling you to better make out tiny print or small details. I didn’t have one of these installed on my machine until about nine months ago, and I wouldn’t want to live without it now. There is a free utility built in to Windows, but it isn’t quite as robust as some of the other products on the market. The description for this one says:

Magic Lens Max is a real-time, intuitive and advanced screen magnifier and desktop viewer to zoom, rotate, enhance, view and capture any area of the screen display. With built-in highly optimized resampling and enhancing filters, Magic Lens Max quickly generates high-quality lens view with clarity in various situations. It also lets you viewing in different color mode or through separated color channels.

As I type this, there’s another 22 hours and 55 minutes left to download and install Magic Lens Max. Why not give it a whirl?

(Yes, it’s a Windows app. Aren’t we the only ones who need such crutches?)

Oh - while I don’t find today’s free game offering terribly interesting, I have found some of the games to be very useful distractions on days that involve too much pain to do anything and I can’t focus well enough to read. Popping bubbles or whatever is a perfectly mindless pursuit, and very conducive to zoning out and get my head away from the pain for a bit. I don’t do “twitch” games, or anything that requires a lot of dexterity or is completely tied to speed. If I was that dextrous and/or fast, I’d be doing something more useful than playing computer games.

Paula Kamen, author of All In My Head, talks about the value of education in coping with chronic illness in an excellent editorial in the New York Times.
Leaving the Rabbit Hole. This passage, in particular, spoke to me:

The worst thing, to me, about having a non-stop multi-year headache isn’t necessarily the pain. Or the way it tends to disrupt intimate relationships, empty all financial reserves, and sabotage the best-laid career plans. It’s not even the endless barrage of (albeit well-meaning) suggestions for “cures” from everyone you meet, most of which you’ve already tried anyway (except for the colon cleansing and the Jews for Jesus conversion).

No, it’s the emotional suffering – from all the guilt and the shame, of patients like me thinking it’s our entire fault, and maybe all in our heads.

She also mentions a good site for anyone who has problems with migraines, Robbins Headache Clinic.

ButYouDontLookSick has a marvelous article up today: ButYouDontLookSick.com : Pregnancy & Fibromyalgia: Lessons Learned and Other Random Thoughts.

I’m in the “0.08% chance of that happening” group, like the author. I was sick all the time throughout my one successful pregnancy. Yes, all day, every day, from about a week after conception ‘til months after the delivery, because it took that long before all the hormones settled back down. My tummy hasn’t been the same since — I get sick to my stomach far more easily now than I ever did pre-pregnancy.

I also felt seriously misled, as I’d heard about this “morning sickness” thing, but all the time sickness? Nobody talks about that!

That was in 1990, and I wasn’t diagnosed with FMS until 1993. I doubt my trouble had as much to do with fibromyalgia as to the fact that I’ve had hormonal problems (PCOS, particularly) since hitting puberty. My body just doesn’t like high hormone levels.

Anyway, head on over to ButYouDontLookSick and comment. They’ll be happy

Some of the comments are pretty old by now, but there are certain themes that come back, over and over again. I’ve decided to answer them once, and that’s it.

ME and FMS are not “lifestyle” diseases. Researchers have found genetic, neurological and cardiological anomalies, so get off that blame-the-victim bullshit. We know better. We’ve done the diet and exercise dance. We’ve tried air-cleaners and removing toxins and natural cleansers and vitamins and health foods, and while some of them are nicer than the alternatives, they cannot cure chronic fatigue syndrome or fibromyalgia because they are not part of the cause.

While we’re at it, no, alien abductions don’t cause FMS, either. I know you’re laughing, but there really is site out there that makes such claims. No, I won’t link to it. It’s bad enough that it exists!

“Chronic Fatigue Syndrome” is a totally inadequate name for a disorder whose sufferers experience far, far, more than a little tiredness. That’s why we have a new and better name for CFS, as of January 2007: ME/CFS, or myalgic encephalopathy/chronic fatigue syndrome. The disease has been known as ME all along in the rest of the world, although sometimes the acronym was used for myalgic encephalomyelitis. Personally, I preferred one of the other suggestions, chronic neuroendocrineimmune dysfunction syndrome (CNDS), but I wasn’t on the committee.

I would happily rename fibromyalgia “you don’t want to be me” or “betrayal by entire body, taking your mind with it,” but I don’t think anybody is suggesting that it be renamed. The name just doesn’t seem adequate to its impact, though it’s a little better than some of the older names, like “rheumatism.”

To others who have said “prevention is better than cure.” Well, yes, and “a stitch in time saves 9.” Yup. I’ve got plenty of aphorisms, too. Tell me, pray, how one “prevents” disorders whose origin is unclear? As I said above, researchers have identified genetic anomalies. We have fairly good evidence that fibromyalgia, at least, has a genetic component. We’ve got brain scans showing that fibromites’ brains react differently to painful stimuli, and other tests showing that our spinal fluid has much higher levels of a neuropeptide involved in transmitting pain impulses than non-fibromites.

With that in mind, how would you go about “preventing” fibromyalgia? Advising us not to breed? Many of us have already done so by the time we’re diagnosed — and, of course, that can’t help us when we’ve already got the disease. We can use our own diagnoses as warnings that our own children may have a susceptibility to fibromyalgia, but what then? Smother them in cotton batting, to keep them from experience any stressors in life that might set off the FMS bomb in their genes?

Being fat doesn’t cause ME or FMS, either, although it’s common to gain weight after developing either disorder. I don’t know anyone who is able to maintain the level of activity he or she did before falling ill, and many of the drugs used to treat the symptoms of these disorders cause weight gain. Losing weight is even more difficult for us than for other people. Telling us that we’d feel better if we lost weight is not helpful in the least. I’ve never once heard of anyone who was “cured” of FMS or ME because he or she lost weight — and if it were happening, I would know it, because I pay a lot of attention to these things.

Even if I thought weight loss offered a “cure,” or even amelioration of symptoms, I see no reason to discuss drugs like Xenical at any length. Any drug or procedure promising weight loss will has an easy time getting approved because of our society’s hatred of fat people. Fen-phen, anyone? “Oh, the drug will kill some patients, or leave them with permanent heart damage? Hell, it’s worth it if there’s a chance of losing weight!” The weight-lossself-hatred industry has more than enough money and power to lube their way past any flimsy little regulations standing in their way.

Diet and sports and their relation to weight are another thing all together, and beyond the scope of this blog. I recommend you to peruse the worlds of the delightful Sandy Szwarc over at Junkfood Science, who does cover that topic, frequently, thoroughly, and well.