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.

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.

I’ve had these two stories bookmarked to post here for a bit, so it seems past time for me to actually do it.

The best new pain cures, with a focus on women

Many women have a tough time finding the right kind of relief for their pain — and for good reason: Until recently, experts hadn’t actually studied women’s pain specifically, and most research wasn’t conducted with a woman’s hormones and physique in mind. All that’s changing, though.

Docs now know that to banish our aches, they must develop treatments formulated for women’s bodies. What’s more, researchers are also looking for — and finding — ways to head pain off at the pass, so those of us with chronic troubles such as migraine, fibromyalgia, or backache don’t have to be hobbled by pain on a daily basis. Here, how the new research will help you live an (almost) pain-free life. Health.com: Smart ways to banish pain

It’s definitely good news that they’re doing the research, at least! There’s good information here on how estrogen and other hormones affect the central nervous system. The article specifically mentions treatment for migraines and other headaches, fibromyalgia, and chronic fatigue syndrome.

There’s a definite anti-painkiller bias in the article, unfortunately. The author doesn’t seem to grasp the fact that ibuprofen isn’t enough “preventive medicine” for some of us, but if you can look past that it’s a decent article.

Low-energy bulbs ‘cause migraine’

I’ve had concerns about this issue myself. Fluorescent bulbs have always been a problem for me, and the “low-energy” bulbs that are so popular now are fluorescent. The flickering of fluorescent bulbs can also trigger seizures in epileptics. While manufacturers claim that the new bulbs don’t flicker, they still cause problems for some people. Eye strain from the low-intensity light is cited, but some of us do perceive flickering.

The U.K. plans to ban the sale of conventional (incandescent) bulbs within the next four years. Patients’ associations are asking that the older bulbs remain available for those who have issues with the newer ones.

This article didn’t happen to mention another problem with the disposal of the bulbs: they contain mercury. You can’t just toss them in the trash, and if one breaks you have an environmental hazard. That cost is seldom mentioned when people talk about how much can be saved by switching to those bulbs. When I looked for legal ways to dispose of the bulbs here in Atlanta¹, all of the results involved paying $1 or more per bulb. How many people are going to do that? Not many, which means that the bulbs will go into landfills, releasing the mercury.

In looking for a citation regarding the disposal problems, I came across another article that states that the fluorescent bulbs also cause skin healing problems for those who are photosensitive due to lupus, eczema, or other conditions.

I think we’ll keep buying the full-spectrum incandescent bulbs for now.