“You have multiple sclerosis? My cousin cured her MS with a gluten-free diet and qi gong — you should really try it!”
Since I was diagnosed with MS 17 years ago, I have heard many, many versions of this story, though with a rotating cast of miracle cures in the starring role. Some involve mainstream pharmaceuticals; many more are from the world of alternative medicine. I usually politely say, “Thanks for letting me know,” and let it drop. Everyone who tells me a story like this wishes for my good health, and I do appreciate that.
Once in a while, though, someone gets more of a response than she bargained for. I describe in detail why I don’t plan to take her recommendation, and why it actually troubles me to get the advice in the first place. Because I’m in the midst of a relapse right now, I’ve had several of these conversations recently. Comparing notes with a friend who has been through cancer treatment, we realized that we have been receiving similar free advice. Well-meaning, yes. But it also leaves us feeling overwhelmed, frustrated, and blamed for our own illness. This happens to people with any number of chronic, poorly-understood conditions, such as cancer, arthritis, migraines, and lupus, in addition to MS. Since so many of us have or know someone with a chronic condition, it seems well worth sharing my perspective. I’ll explain in terms of my experience with MS, since I think it’s easiest to understand a concrete case study.
Here is the most crucial thing: no one can tell if a particular treatment is working in any particular case. Not the patient, not her doctors. This goes for every MS patient. We can never tell if the course of the disease would have been worse, the same, or better without a particular treatment. I have injected myself with Copaxone, an immuno-modulating drug commonly used to reduce the incidence of MS symptoms, every day for the last 17 years. If you ask me, “Is Copaxone working for you?” I have to honestly say, “I don’t know. All I can tell you is that over 17 years I have had 3 episodes,* each of which corresponded to one lesion in my brain. That’s usually considered pretty good, in the scheme of MS cases. I’ve been on Copaxone since the first one.”
Still, just because we can’t be sure whether the Copaxone is “working” in my case, it does not mean that my doctors and I are entirely shooting in the dark. We have one fantastic tool that makes me confident I have been doing the right thing in subjecting myself to daily injections for the past 17 years and the foreseeable future. That tool is the randomized controlled trial. It is a powerful way to pool information and compare our experiences so that we can tell how likely it is that a particular remedy is at least somewhat effective.
Here’s how it works: a bunch of patients are recruited to voluntarily participate in a medical trial based on something they have in common, such as a particular diagnosis. They are “randomized” into groups, meaning that patients are assigned to the groups without peeking to see whether they seem like they’d do particularly well or poorly, or have something else in common such as age or gender that could skew the results, or preference for a particular treatment regimen. Generally one group receives the treatment under study, and another, the “control group,” receives a placebo or a well-studied and commonly-accepted standard treatment protocol. The two treatments are followed for some specified length of time. Then the results of the two groups are examined, each in aggregate. While any one patient’s results might be unpredictable, if a sizable, aggregated treatment group did better on average, we have good reason to believe that the treatment is effective. The more people participate, and the longer the trial runs, the more sure we can be of the results.**
In the case of Copaxone for multiple sclerosis, randomized controlled trials run on hundreds of patients over a number of years demonstrate that the drug reduces episodes of actively-developing, clinically-recognizable symptoms by about a third to a half. Do I know for sure that I would have had 6 MS episodes without the medication? Certainly not. But without the aggregation of everyone’s information, I would have no clue as to whether the Copaxone was totally ineffective, a complete cure (during the 14 years without new symptoms), or somewhere in between. I wouldn’t know whether to compare my 3 episodes to a fellow patient’s single problem, or another person’s almost-constant relapses. Aggregated data from a randomized controlled trial, though, allows me and hundreds of other people on the treatment to add up several hundred episodes, and compare our collective experience to the several hundreds of “extra” episodes in the group that didn’t take the drug. Now we all know that the drug works, at least a bunch of the time for a bunch of people. It’s not perfect information, but it is oh-so-much better than nothing.
Historically speaking, randomized controlled trials are a relatively recent invention, coming into their own in the mid-twentieth century. Before the late nineteenth century, all respectable medicine was what we would think of as “personalized” medicine. As historian Conevery Bolton Valencius has explained, ill health was understood as the product of a dangerous imbalance in the “humors” of the body and its physical environment. Physicians sought to heat or cool the body, stimulate it or soothe it, evacuate it or nourish it, and adjust its surroundings, according to the specifics of the ill person’s condition and personal history. Medications were chosen and combined according to how they would bring a particular person and her surroundings back into balance. Any medicine that claimed to universally treat venereal disease, say, or tuberculosis, was “snake oil,” highly suspect according to the tenets of mainstream medical practice. Each cure had to be rendered on a particular patient and his particular bodily history. Physicians naturally chose to share their insights in the form of case studies, which were detailed descriptions of a single episode of illness and cure.
Most “alternative” medicine in the United States today operates more like nineteenth century medicine than like the specific remedies assessed in randomized controlled trials. This is not to say that alternative medical systems do or don’t work; rather, I can’t tell if any of it works for multiple sclerosis. The problem with treating MS episodes or patients as a series of individual cases is that MS often looks as though it’s been cured (sometimes over and over again), and the most recently-attempted remedy is often given credit. If I tried everything that appeared to work for someone, I’d be very busy with medical appointments and totally broke.
It’s hard on a person to continually turn down treatments that someone promises will work. Sometimes, it feels like the upshot is that if I don’t try the corn-free diet or the vibration therapy, it’s my own fault when I’m ill, or I am threatened with more MS problems if I don’t take action. I’ve occasionally had alternative practitioners behave very unethically, I think out of ignorance, when I’ve declined their suggestions. One went on and on, “oh, but I saw the person get worse and worse, until she was in a wheelchair and almost totally paralyzed, and then the treatment was an amazing cure — you really need to consult my colleague.” I’d love it if friends and acquaintances had a better understanding of the nature of evidence about MS and other relapsing chronic conditions; I feel strongly that practitioners really need to understand it to practice in good conscience.
This doesn’t mean I’ll never try something that hasn’t been proven in a randomized controlled trial. It does mean I am extremely selective. Personally, I believe that pursuing a part-time dance career has been an excellent therapeutic response to my multiple sclerosis, in addition to its aesthetic rewards. I have some theories about the myelinating benefits of high-level technical practice, and some personal observations about the value of an acutely-developed and multi-systemic sense of balance and proprioception (body sense). But I also know what I don’t know. I’m happy to believe that dance is good for healing MS because I want to be dancing anyway. But I won’t be telling anyone that dance cured me, or strong-arming them into daily ballet barre. I will restrict my recommendations to Copaxone. I can say with confidence that chances are, Copaxone is helping me, even though I don’t have any way to be totally sure. I know it’s a good bet because I have evidence from a randomized controlled trial. Dance as MS therapy? That’s a matter of faith.
* “Episodes” are also known at “attacks” or “relapses.”
** RCTs are in reality typically quite a bit more complex than this; I am giving the one-paragraph, simplified version of an explanation. I highly encourage anyone who is curious to learn more.
Valencius, Conevery Bolton. The Health of the Country: How American Settlers Understood Themselves and Their Land. Basic Books, 2002.
Rosenberg, Charles E. “The Therapeutic Revolution: Medicine, Meaning and Social Change in Nineteenth-Century America.” Perspectives in Biology and Medicine, v. 20 n. 4, 1977.
Gabriel, Joseph M. “The Testing of Sanocrysin: Science, Profit, and Innovation in Clinical Trial Design, 1926-31.” Journal of the History of Medicine and Allied Sciences, v. 69 n. 4, 2014.
Meldrum, Maria. “A Brief History of the Randomized Controlled Trial: From Oranges and Lemons to the Gold Standard.” Hematology/Oncology Clinics, v. 4. 14 n. 4, 2000.
Wikipedia entry on randomized controlled trial.
PHAST, Health Knowledge, “Introduction to Study Designs — Intervention Studies and Randomized Controlled Trials.”
Feature image: Mashup of Mitchell Joyce/Flickr (CC BY-NC) and Figure 4: Randomized Control Study, from K. Suresh , G. Suresh, S. V. Thomas, “Design And Data Analysis 1 Study Design” Ann Indian Acad Neurol (2012). (CC BY-NC-SA)
Okay, good to know if I ever run into someone with a chronic health condition. Sad to say, I probably would be one of the ones twittering away about alternative cures, just out of a desire to be able to *do* something. However, if it does irritate/hurt you and others more than help, I’ll keep my mouth shut.
Thanks for your comment! I completely understand the desire to be helpful. And the desire to be able to *do* something! I have the same impulse when I hear about other people’s health issues. Working out my own thoughts on this has changed how I respond to other people’s health challenges, too. I’ve decided that some responses are almost always helpful: first, just asking, “how are you doing with it?” If the person wants to talk, it’s a good opening, but she can also be brief and move on, if that’s her preference. If she wants to talk about the alternate remedies she’s pursuing, you have a great opportunity to share what you know that you think could help, and that you know she’s interested in right now. And, “let me know if there’s any way I can help,” in circumstances where I really mean it. Or some specific offer of help, if it makes sense: “let me know if you’d like me to pick up your kids from school.” In my blog post, I wanted to help people understand RCTs and how people with chronic conditions may be thinking about their therapeutic options, but I would hate to censor people from offering their support.
Okay, yeah, thank you. I’ll definitely keep that in mind. It’s good to know I can be helpful without hurting anyone.
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MS is, I believe it thought to be an auto immune disorder. I hear they are doing interesting research on auto immune disorders at the University of Bristol.
“Sometimes, it feels like the upshot is that if I don’t try the corn-free diet or the vibration therapy, it’s my own fault when I’m ill, or I am threatened with more MS problems if I don’t take action.”
Thank you for this. I experienced similar things – directly and indirectly – during my dad’s experience with cancer. It often felt like we were under some kind of surveillance from people who knew all the secrets, and if we just listened and made him eat organic, or give up meat, or practice aromatherapy, he would suddenly get better — and that not trying those methods was keeping him sick. But it just wasn’t that simple.
All healing is “faith healing” in that belief in the practitioner and belief that the treatment will work is very important. In face it has been know to cause problems with double blind clinical trials. There have been studies on this. I guess I’m on the other side of this issue. I don’t have MS but I have similar complaints about people who feel the need to tell me to give up the “crazy new age stuff” and go to a “real” doctor. 🙂
Thanks for your comment! I agree with you that it’s not helpful for people to criticize your choices about your health care. (Like I said in the blog post, I consider dance to be a treatment modality in my case; I’d be really annoyed if someone pooh-poohed it as an appropriate choice for me to make for myself, even if it’s not supported by an RCT.) I also agree that it’s important for a person to “buy into” whatever treatment she uses, based on her judgement about all aspects of her life, not just the specific disease and the specific therapy. All treatments come with costs, in terms of money, or time, or side effects, and any of those can potentially be more problematic than the disease. If someone finds a treatment modality that gives her better health broadly construed (including peace of mind and general well-being, whether or not it provides relief from the specific condition that provoked her to seek care), I am all for it, proven by RCT or no. If instead, she feels pressured to pursue a whole bunch of alternative treatment modalities at the expense of things for which she would rather spend the time, money, energy, and hope, then I see a real problem. Alternative therapies are often valuable because practitioners address the whole person, provide relief at the time of the therapy, and provoke minimal side effects. If an unproven therapy does not give these benefits, but rather operates more like most drug therapies, with unpleasant side-effects and without immediately demonstrable benefits, then I would, as a patient, demand an RCT before I’d invest my money and my life in it.
This is a great post. As someone with multiple chronic illnesses, I, too, feel tired of the unlimited advice both from standard medical treatments and “alternatives.” It always feels like it’s my fault when I’m not feeling well, and I never know what to do about it.
Reblogged this on Conversations I Wish I Had and commented:
Thank you for this great read, but mostly, thank you for speaking of your personal experience. It’s invaluable to speak from the patient’s side, a side too rarely heard of.