This isn’t specifically about CFS/ME or FMS, but I found it interesting, and I think it makes sense.

Why Mental Lethargy When Sick

During an infection, humans typically experience a set of physiological and psychological symptoms, including fever, confusion, decreased motivation, depression and anxiety that are accompanied by a slowing of movements.

These changes, collectively known as “sickness behavior,” are the body’s way of conserving energy during illness so that an effective immune response can be launched. This new study helps researchers further understand how cytokines communicate between the immune system and the brain to promote sickness behavior.

Since many people with CFS/ME have chronic fevers and other symptoms similar to those of infectious illnesses, I have to wonder if the results of this study will be examined with regards to CFS/ME.

The interview we did is up!
Chronic Pain and Sex: a Couple’s Gentle Battle With Fibromyalgia

I’m pleased with it. There are very few, mostly immaterial inaccuracies.

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.

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.

Well, Time Magazine reports that the National Academies of Science’s Institute of Medicine says that’s the figure, anyway.

Doctors’ sloppy handwriting kills more than 7,000 people annually. It’s a shocking statistic, and, according to a July 2006 report from the National Academies of Science’s Institute of Medicine (IOM), preventable medication mistakes also injure more than 1.5 million Americans annually. Many such errors result from unclear abbreviations and dosage indications and illegible writing on some of the 3.2 billion prescriptions written in the U.S. every year.

The cure, according to the sources cited in the article, is automated prescribing. Physicians would use a web-enabled phone to select medications and dosages from menus, so names and numbers wouldn’t be miswritten or misheard (mis-selected is always possible, but you can’t removed all possibility of error). Most of the money for the systems will come from health insurers, so I don’t know how all this will work for people who pay for their own prescriptions.

The whole article left me with many questions, in fact, about choice, and product positioning - will doctors even be able to prescribe medications that aren’t in the “formulary” when they know that something else will work better? Will they be able to select something outside the standard range of doses? What about compounded prescriptions?

This little statistic surprised me, but there’s no source cited, so I’m not sure I trust it.

SureScripts CEO Kevin Hutchinson says one key to reducing medication errors is to get the most prolific prescribers to transition to electronic processing. “Not a lot of people understand that 15% of physicians in the U.S. write 50% of the prescription volume,” Hutchinson says. “And 30% of them write 80%. So it’s not about getting 100% of physicians to e-prescribe. It’s about getting those key 30% who prescribe the most. Then you’ve automated the process.”

Unfortunately, Time doesn’t bother to give any suggestions as to how to save lives until this utopian system to control those wild and wooly scribblers is in place. I guess I’ll have to give it a go.

Please remember that when I say “you,” I mean you or your advocate.

First, be sure that you always know what your doctor is prescribing for you, and why. Take notes. Write down both the name and the dosage of every medication, and what it’s for. If you’re unclear on the spelling, as the doctor or his staff to spell it out or write it down for you.

If your doctor is giving you refills on your normal medications, look at the refill prescriptions. Do they seem to say what you expect them to say? If not, ask about them. Be sure. He might have misremembered or written down the wrong thing. Doctors are not infallible. It has happened to me! If you’ve already left the office, contact his staff. It’s better to be safe than sorry!

Compare your notes to the prescription bottle before you leave the pharmacy. If the prescription has been filled with a generic and your doctor gave you a brand name, double check with the pharmacist (not just a clerk) to be sure that they really are the same medication. If your doctor said you were to take the medication twice a day and you’ve only got 30 pills to last 60 days, don’t leave the pharmacy.

Read the information included with your prescription. Make sure that it agrees with whatever the doctor told you, or makes sense considering why the doctor prescribed this medication for you. If you don’t understand, again, call the doctor’s office, or at least the pharmacy. “I have fibromyalgia, and my doctor prescribed this medication, but the insert just talks about depression. Why?” It’s a perfectly valid question. If the doctor already explained that to your satisfaction, of course, you needn’t call — but do call if anything doesn’t make sense.

Taking these precautions should protect you, whether your doctor scribbles, has beautiful penmanship, or uses an automated system.