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.
I would tend to agree with you on many points. Many of the CAM treatments are benign, aside from the weight reduction they cause to your checking account. The real problem comes in when people rely on CAM as their first and only medical action. It is even worse when this way of thinking is applied to a child. If you have chronic back pain and acupressure works for you great, but when a chiropractor claims he can treat asthma or a parent takes their child with cancer to a natropath instead of an oncologist I have a huge issue with it. I also take issue with misleading or flat out false claims made by many of these snake oil salesmen in order to milk those who have a “intangible illness” out of ever cent they can. This is nothing more than praying on a persons weakness and I rank these criminals just below muggers and common thieves.
I use to believe in all types of woo but now I simply follow the punch line of one of my favorite jokes. “What do you call alternative treatments that work? Medicine.”
Definitely the quacks and snake-oil salespeople are a part of the CAM culture that are nothing but harmful. As I’ve written about before, some of them may actually think they have our best interests at heart, while far more are just out to bilk us — either way, they provide only bad science and a money sink for physically and emotionally vulnerable people.
That was my post in the forum-that-will-not-be-named. I’m so proud!
And I’m not at all ashamed I used the “homeopathy kills babies” card in that thread – after all, the CAM weenies rely on pathos, so we shouldn’t be afraid to confront their idiocy with emotional appeals occasionally.
What’s funny is while your post may have had a bit of the “emotional appeal,” the link was a non-biased news story that simply reported the facts of what happened. Though I don’t condone or accept it, I can at least understand some people’s rejection of sites like Science-Based Medicine that have built-in skepticism towards CAM. But the hostile response to the plain facts laid out in that article was just remarkable.
And you should be proud. You’re a stronger person than me for sticking it out and fighting the good fight there.
Name the forum, darling. They can’t exactly do anything worse to us as a result.
Besides, it has already been named.
I love your blog! As a disabled atheist female I feel I’ve hit the blog-jackpot with a mix of a lot of my fave things. I hope you are doing well today (plenty of spoons and the quacks aren’t trying to get you!)
Claire x
It’s very nice to meet you! Disabled critical thinkers unite! And many spoons to you too.
Nice post.
While I’m not a fan of CAM in general I’ve never really understood why we don’t accept it as a way to simply make people feel better. We don’t treat illness with morphine but we do use morphine to make people comfortable while we treat their illness. If a bogus treatment can provide comfort I think that’s reason enough to follow it providing it’s in addition to actual health treatment.
Yes, I too support CAM as analgesia, depending on the situation. The placebo effect is another area where I sometimes relax my skeptical viewpoint. As I mentioned, especially where conventional medicine and pain relief have failed, I have a problem with the idea of telling someone to stop whatever they’re using just because there haven’t been any RCTs on it and/or the effect may just be a placebo. (Again, as long as it’s an affordable part of their care.)
The reason I make an exception for homeopathy is because I think many people don’t understand what it is and why it doesn’t work. I think it might be the biggest CAM scam there is, so I will almost always try to steer people away from it.
Actually I would welcome doctors saying “I don’t know.” All too often because they don’t find anything with standard tests, the conclusion is that it must be imaginary. Some doctors could use some CBT to accept that their knowledge is limited and to learn to say “I don’t know”. I would prefer to be send away with a prescription for homeopathy than for antidepressants, the latter is usually the case when doctor’s don’t want to admit that they don’t know. At least homeopathy, does no harm.
Skeptical thinking is usually directed against CAM. But is criticism on a certain CAM justified when a practitioner is making insane claims? CAM can be a good treatment and even a cure for certain diseases and symptoms, but then you get practitioners who start claiming it as the one cure for all, and then the skeptics follow saying it is quackery. Temper, temper, some common sense please.
My acupuncturist admits that it cannot cure ME/CFS, it might offer some temporary relieve for certain symptoms (it does, very temporary, it’s also relaxing), but that’s it. It did wonders for my RSI (wrist and elbow) though.
In the Netherlands macrobiotics is listed as quackery because a therapist prescribed it as a cure for cancer and at least 2 famous persons died as a result of refusing chemo. I have two macrobiotic cooking books and have participated in a macrobiotic cooking class. Cancer was never mentioned. Some raw ginger to suppress nausea and some tips to reduce diarrhea and acid reflux, but that’s it. It’s just a healthy diet. My diet is based (with some changes) on it and I have found it’s best for stabilizing my ME/CFS. The typical western diet, diet with lots of red meat, raw food diet, vegan diet, … make my condition worse.
It is not because someone is skeptical that that person is good. Prof. Van Houdenhove from the psychosocial school, the Belgian Wesley or Reeves, is an active contributor to the Belgian skepp site opposing the biomedical treatment of ME/CFS. One should always remain vigilant and skeptical even of skeptics.
Just my 2 cents.
1. I very much appreciate when my doctor says “I don’t know.” This just happened today, when I asked him about low-dose naltrexone. He told me what his knowledge and experience were, which were limited. I don’t go to doctors anymore who don’t say “I don’t know.” However, if one were to send me away with a “prescription” for homeopathy (here in the U.S. you don’t need a prescription for sugar pills, you just buy them wherever), I would fire that doctor immediately. That says to me the doctor doesn’t know that homeopathy is worthless. “I don’t know” is different from ignorance, and anyone prescribing or supporting homeopathy in this day and age is either ignorant or a scam artist. If I’m having actual symptoms, and there exists a conventional treatment for those symptoms, I am not going to choose water as an alternative, nor will I continue seeing a doctor who suggests it.
2. You ask for common sense, but I’m inferring you want this to mean “everyone should get their say.” Well, they shouldn’t. Skepticism seeks to debunk pseudoscience, pseudohistory, and other claims by presenting facts and data, usually from scientific consensus. Such as “Yes, the Holocaust happened because of the mountain of evidence we have, not to mention plenty of eyewitnesses to it.” And “No, homeopathy doesn’t work because it contravenes the very laws of physics.” I haven’t read too many skeptical analyses of CAM that reject all of it outright. Obviously it depends on the treatment and how it’s used, as has been said here. As to that professor, is he a member of the skeptical community as I described above, or is he simply a doctor with a wrong-headed view of CFS? “Being skeptical” about something is not the same thing as “being a skeptic”; you can be a cynical doubter of things without applying any critical thinking to it and say “I’m skeptical,” but that’s not the type of skepticism I cover in this blog.
You have some straw men in your comment. No one ever said skeptics are infallible; that’s why you are required to do your own due diligence as well. As has been said in my post and in the other comments, CAM (like macrobiotics) can be fine unless taken to extremes, and people who are thinking about a macrobiotic diet should by all means know that it is not a cure for cancer. Here you’re only supporting my thesis, that as long as you’re informed, don’t waste money on quackery, and don’t refuse conventional treatment when it’s needed, you’re probably all good.
Hm, I guess my example on homeopathy and AD backfired on me. What I was trying to say was that a homeopathy prescription would do me no harm, while a prescription for AD would. Belgium has a strong psychosocial school for ME/CFS, so doctors always try to prescribe AD as sleeping pill or energy booster. I’ve been a good boy and tried them out, but they make me sick and depressed. So from my health point of view, a prescription for homeopathy would be better than one for AD.
Common sense was referring to evaluating a CAM on its merits (or lack of), not on the claims of some practitioners. We all love the WHO because it lists ME/CFS as a disease of the nervous symptom, but the WHO also has a list for diseases, symptoms or conditions for which acupuncture has been proved-through controlled trials-to be an effective treatment.
More on homeopathy: an excellent post from Dr. Steven Novella.
http://www.theness.com/neurologicablog/?p=1383
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