Exercising caution

Healthy readers: Have you ever secretly wondered if people with ME/CFS or fibromyalgia are contributing to their own problems? Do you think they would get better if they just exercised more?

Readers with ME/CFS or fibro: Have you become enormously frustrated by all the well-meaning friends and family members who say you should just exercise?

Caregivers: Are you ever accused of enabling when you don't try to force your kid/spouse/parent into more activity than your kid/spouse/parent can handle?

All y'all need to read this:

Debunking Myths: 'More Exercise' for Fibromyalgia & Chronic Fatigue Syndrome

The article explains, in very plan language, how exercise can be harmful to people with ME/CFS and fibromyalgia. It's a good, informative read, and because it's associated with About.com, people might actually take it seriously.

Bookmark the page. Send the link to your friends the next time they say you should be exercising. Maybe they'll finally get it. Or, if not, at least you didn't waste your breath on useless debates with those who are absolutely convinced that they know better than you.

Invisible illnesses and media bias: Comment advocacy

A little while ago, I ran into fibroPR101 on Twitter. As her handle suggests, she does public relations for organizations that support people with fibromyalgia and other chronic diseases. I asked her (in 140 characters or less) for advice on how to get the media to dig deeper when psychiatrists make claims about ME/CFS or fibro being psychosomatic.

Here's her response, in more than 140 characters.

Imaginary treatments: addendum and erratum

The addendum: an interesting (and heartbreaking) response to my post on placebos on Life as we know it.

Another concern for patients is those, like me, who suffer permanent physical damage from not getting the correct medication. I've been told I will never be well enough to return to full-time employment because I didn't get the proper treatment in the critical early phase of this relapse.

The erratum: I wrote that maybe the person who inspired "Everybody Knows About Me" (and pointed me to the original placebo article) was lucky, because at least his doctors were willing to say they didn't believe him. After reading my post, he said that actually, very few of his doctors had the balls to tell him what they really thought. Most just prescribed Motrin or something and encouraged him to come back.

Why. Why does anyone think this is OK?

Imaginary treatments for real diseases

Sometimes I count it as a victory when I manage
Just to drag my aching body out of bed
The doctors, mystified, could not produce an answer
So they told me it was all in my head

-- Everybody Knows About Me

The person who inspired the song "Everybody Knows About Me" pointed me to a New York Times article last night. According to this piece, half of doctors regularly prescribe placebos.

The most common placebos the American doctors reported using were headache pills and vitamins, but a significant number also reported prescribing antibiotics and sedatives. Although these drugs, contrary to the usual definition of placebos, are not inert, doctors reported using them for their effect on patients’ psyches, not their bodies.

The bioethicists are having a field day with this one. On the one hand, it's wrong for medical practitioners to lie. Patients trust doctors to know more than they do (though many with obscure diseases like ME/CFS often find themselves having to educate their own physicians), and to provide valid information and treatment. Prescribing medication that has no clinical effect on the illness is a clear betrayal of that trust. On the other hand, if the placebo effect actually works, then the doctor has in a sense provided real treatment ... right?

Well, not so fast. Scroll a few paragraphs down, and we find this telling quote:

Dr. William Schreiber, an internist in Louisville, Ky., at first said in an interview that he did not believe the survey’s results, because, he said, few doctors he knows routinely prescribe placebos.

But when asked how he treated fibromyalgia or other conditions that many doctors suspect are largely psychosomatic, Dr. Schreiber changed his mind. “The problem is that most of those people are very difficult patients, and it’s a whole lot easier to give them something like a big dose of Aleve,” he said. [Emphasis mine.]

Readers with fibromyalgia or ME/CFS or similar are at this point already throwing things at the screen, and don't need me to explain what's wrong with the good doctor's argument. But for those of you who are unfamiliar with fibro, here's a breakdown:

1. Fibromyalgia is a real disease. It is formally classified as such in the International Classification of Diseases under Soft Tissue Disorders.
   
   
2. Instead of bothering to do any actual research, Dr. Schreiber simply assumes his fibro patients are being "difficult."
   
   
3. He prescribes medication that not only doesn't help, but might cause harmful side effects. Fibromites have enough pain in their lives without also having to deal with gastrointestinal problems.
   
   
4. The doctor gets paid for dispensing treatment he knows to be clinically ineffective.

"Everybody Knows About Me" contains a passage describing how some medical professionals write off real pain and suffering as "all in your head" instead of admitting they have no idea what's wrong. That really happened to the guy I wrote the song about. Maybe he was lucky, though. At least the doctors who say you're crazy let you know where they stand. They don't trick you into going back to them instead of continuing the search for someone who will believe you ... and who will at least try to help.