One of what I call the “social symptoms” of multiple sclerosis (MS) is the relentless advice about complementary and alternative medicine (CAM) approaches that “you simply must try.” As soon as you are diagnosed with multiple sclerosis, you find that advertisements and promises are everywhere for non-medical “cures.” People start telling you about a friend of a friend who was confined to a wheelchair until they discovered wheatgrass juice, a certain Chinese pharmacy or magnet therapy. Now, according to these wide-eyed and fervent individuals, the formerly-paralyzed person with MS just completed a hike up Mount Everest. Worse than the advice is the judgment that comes when you choose not to pursue the recommended therapy – clearly (in the head of the person offering this valuable information) you are not serious about your health.
On the other hand may be your doctor, who is offering you medications that are proven to reduce relapses and lesions, and not understanding why you think you may need more. The neurologists are thrilled with the advances that they have seen in very recent years, and are often reluctant to see patients spend money and effort on therapies that are scientifically unproven and may even be harmful.
What is CAM?Complementary and alternative medicine (CAM) covers a variety of therapeutic or preventive health care practices that do not follow generally-accepted medical methods and may not have a scientific explanation for their effectiveness. “Complementary” medical approaches are undertaken in conjunction with Western medical treatment (i.e. acupuncture to relieve nausea from chemotherapy), while “alternative” approaches are used instead of other treatments (i.e. practicing yoga to relieve spasticity rather than taking medication). CAM approaches include: acupuncture, herbal medicine, reflexology, massage, reiki, yoga, meditation, aromatherapy, homeopathy, chiropractic and many others.
Why Don’t Most Doctors Take CAM Seriously?It is difficult for doctors to recommend CAM because, as they will often say, there is usually no scientific evidence that they work. “Scientific evidence” is gained through multi-million dollar randomized clinical trials, such as are performed to test new medications. All of the disease-modifying therapies were “proven” effective through this process, as the patients in the trial who took the medications had fewer relapses and less disability than the patients taking the placebo.
Most CAM approaches have not been tested in such a rigorous way. The types of clinical trials mentioned above involved thousands of patients and many clinical sites, and were designed and analyzed by epidemiologists, physicians and statisticians to measure statistically whether the drug being tested worked. Also, the large trials were undertaken after several “phases” to determine safety and likelihood of efficacy.
CAM is different because:
- There is usually not a specific “product” being tested, rather most approaches are based on something a therapist does. Therefore, it is hard to raise enough money to conduct a large-scale trial, as the profits from the success of the therapy would be diffuse, rather than concentrated in one company.
- It is hard to standardize most CAM approaches so that they could even be compared across sites.
- While there are many small studies and case reports of success of some of the individual approaches, it is hard to claim true “success,” because: the studies are too small to analyze for statistical significance, there are no true comparison groups, the endpoints are primarily self-reported data on symptoms (rather than lesions on MRI scans or other biomarkers), the effects from the therapy are usually mild and transient and the studies are often not rigorous enough to stand up to the scrutiny of the scientific community.
Does That Mean CAM Doesn’t Work?Not necessarily. While no CAM approach has ever come close to showing promise in slowing the progression of MS (there are some dietary approaches that make this claim, however – an entirely different discussion), CAM may offer the following benefits:
- Symptom Relief: Several CAM therapies have shown success in relieving symptoms such as pain, spasticity or sensory disturbances.
- Relaxation: In my opinion, this is one of the biggest benefits of many of the approaches – when you relax deeply, your mind quiets, beneficial chemicals (like nitric oxide) are released, while harmful ones (like cortisol and adrenaline) are reduced, and everything gets a little better.
- Body Appreciation: Several of the therapies increase body awareness, which may result in a greater appreciation of the things that your body can do, rather than a primary focus on your MS symptoms.