Chronically ill skeptics will probably find themselves disappointed if they go looking for critical thinking about complementary and alternative medicine (CAM) on online support forums. This is a thesis I keep returning to because it cropped up again for me recently. I decided to leave one community because of a thread in their CAM subforum (not one in which I was involved). A link to a news story in which a child died due to its parents’ reliance on a popular CAM treatment was met with hostility, unwillingness to start another discussion about CAM, and the notion that “it’s a support forum.”
The original post was intended to help answer the question of “what’s the harm” of relying upon certain treatments. From this I infer that “support” only goes as far as saying yes to whatever treatments people decide upon, even if they are at best useless and at worst dangerous. I have a very different definition of support, which starts with understanding both sides of the issue. The person considering the treatment is sick, in pain, and has heard good things about it from people she considers reliable. The person offering the opposite view (as at the website I just linked to) wants to provide facts showing that there are dangers to these therapies. This isn’t done out of spite, but rather with the first person’s welfare at heart. This is a very good form of support. Should we only be providing the pros and never the cons? Does that sound supportive? Not to me.
Like what’stheharm.net, I am not an enemy of CAM on principle, especially because so many of us have these annoyingly intangible illnesses, where conventional medicine often just throws up its hands at a certain point and says “Good luck feeling better.” After five or so years of involvement with online chronic illness communities, I sometimes deviate from the skeptical motto that “anecdotes do not equal evidence.” Are there reliable randomized controlled trials (RCTs) about acupuncture’s use in easing the symptoms of ME/CFS? I’ll go out on a limb without searching and guess there aren’t many. But I’m just not inclined to leap on people who decide to give it a try, as long as they’re well informed about it. (My exception to this is homeopathy. This is nothing more than a sugar pill and should not be promoted by anyone. Now, if someone is completely informed on the subject, and is both willing and able to shell out money for an at-best placebo effect…well, I can’t understand that one, but I guess I support it too.)
The part I protest is where people reject what Western medicine has to offer. By all means, if you can afford it, go hog-wild with the echinacea and vitamin C, as long as you also get the flu vaccine. (With exceptions for people who have legitimate medical problems with it, of course.) Without a doubt, treat your child’s nausea with ginger root, as long as she also gets the chemotherapy she needs. I completely understand and identify with the frustration chronically ill people may develop towards Western medicine, but rejecting it outright isn’t the answer. If the recent science-based XMRV discoveries and new evidence-based studies eventually produce a cure for CFS, what are you going to do then?
If my position sounds wishy-washy, well, it is, to some extent. As I’ve said before, it’s too hard for me to ignore that desperation felt by people who may be sick and in pain for their entire lives, something that I don’t think is always taken into account by enemies of CAM, or even neutral skeptics. This is a really powerful force. This isn’t about fixing something with a vaccine or radiation: this is a lifetime of doctors saying “We don’t know.” People will seek alternative therapies, and it is supportive both to understand and respect why they are doing so, as well as to provide evidence for why they may not want to choose something they’re considering.
Here are a few examples of alternative therapies I have seen suggested for ME/CFS patients, and things I would suggest instead. Of course, these are only suggestions and anything I mention here should certainly be researched by you and discussed with your doctor. Don’t do or stop anything on the basis of this post alone.
“Alternative”: Homeopathy
Alternative: Water
I’m completely serious. Homeopathy is based on this idea that water retains the memory of molecules of stuff that was in it once but has now been diluted a whole mess of times so it doesn’t even contain that anymore. Instead of paying for this silliness, just drink more water. Especially when you’re constantly running fevers and have other chronic symptoms of infection, it’s very important to stay hydrated just as though you had an acute infection.
“Alternative”: Graded Exercise Therapy (GET)
Alternative: Find your own ways to exercise
GET is controversial. Some studies have supported it; however, studies tend to exclude severely affected patients. Also, not all studies include reporting of post-exertional malaise, a very common and very significant side effect of exercise for people with CFS. Finally, as it has to be done with a therapist, you’re much better off saving the money and constructing your own exercise program around your own skills and limitations. This post has some very good advice; I particularly like that it includes mental as well as physical exertion. Personally, when I’m feeling up to it, there’s one or two songs on iTunes that I am incapable of not dancing to when I play them, so I dance around like an idiot for a while with the curtains closed. Or I like to play air violin to Tchaikovsky’s violin concerto, which if you’re doing it right is a good 15 minute workout!
“Alternative”: Bikram (“hot”) yoga
Alternative: Easy yoga
Yoga is great for people with CFS. All you need are some beginner’s resources — I like this video — and you will learn breathing techniques and a range of exercises you can use depending on how good a day you’re having, and you can do as much or as little as you want. The idea behind hot or Bikram yoga is one that is very attractive in CAM and especially with quacks: removing toxins from the body. Another ME/CFS forum I took one look at and left supported the idea of chelation, which is most often touted as a treatment for autism. Besides the fact that there’s not much need to worry about “flushing toxins,” the high temperatures at which Bikram yoga is practiced should be an automatic warning sign for people with CFS and many other illnesses that affect thermoregulation. Take five, 10, 15 minutes a day to do some yoga poses in your bedroom, but forget about the sweat. And on that note…
“Alternative”: Master Cleanse (and the like)
Alternative: Limited juice fast
The Master Cleanse and other detoxification programs also appeal to this fear that we are ill because we are full of toxins. They are a fairly useless strain on the body; you would do much better to simply eat right and drink a lot of water. That said, short (three-day) juice fasts including snacks of crackers and brown rice, after a doctor’s consultation, can have a certain psychological benefit, like breaking bad eating habits. But in general, our bodies are too stressed out as it is with all the windmills our immune systems are tilting at, and deliberately upsetting the balance by fasting instead of eating healthily just isn’t a great idea.
