Multiple Sclerosis (MS) discussion groups cover all kinds of treatments for MS, from the injections of Betaseron to Hyberbaric Oxygen to Bee Stings.
Sometimes we actually discuss them without having disagreements over the standard of proof on which claims are based.
This is not always the case, but each time we argue it raises an important point, one that we have been over many times.
It merits repeating: while there is something uniquely trustworthy about findings thathave been demonstrated using the scientific experimental method there is still a place for the alternative treatments that have evolved around our disease.
So while the trustworthiness of scientific findings do not necessarily invalidate all other treatments, the difference does make it essential to distinguish between the scientific findings about treatments for MS and the non-scientific or alternative treatments for the symptoms of MS.
It is not only essential for our own thinking individually, but it is even more necessary for the group that is regularly involved in the MS forum. Adequate delineation will allow us to communicate with each other about treatments without rehashing old familiar arguments at every point.
At the risk of oversimplifying, let me review the two categories of treatments, suggest why some treatments deserve greater status as scientifically sound, discuss why people with MS are particularly vulnerable to false promises but then also review why we shouldn't dismiss alternative treatments out of hand.
The scientific findings are marked by statistically significant experiments published in peer reviewed scientific journals. On the basis of this kind of research physicians and scientists can say authoritatively that this or that thing is demonstrated to be true or untrue.
Now not every scientific experiment offers absolute proof. Scientific researchers often speak an arcane language about probabilities and likelihoods. There are also few treatments for the symptoms of MS that one can categorically say will work all the time for everyone. There is also no treatment that works directly on the cause of MS, since the cause is not known.
Some of the treatments for MS symptoms that have the full support of science include Betaseron, Baclofen, a variety of steroids and many others, most of which are symptom specific. Many of these have significant side effects and their effectiveness is often very limited.
This is one of the many frustrating things about MS. Modern science has not provided a cure, or, for many, even significant symptom relief. This leads to those other treatments that do not have full or even any scientific support.
Because MS is a devastating disease and because it leaves those who have it with few scientifically supported tools to throw at it, many with MS have turned to alternative medicine for cures or treatments of one sort or another.
The alternative or non-scientific treatments are not supported by scientific research. These treatments have no scientific studies to support them, or they may have some research that is either old, has proven to be unrepeatable, or has been refuted in some way in the scientific community.
These treatments, as a class, are supported primarily by the personal experience of people who feel they have benefited. Among these treatments is a variety of vitamins and other dietary supplements like Evening Primrose Oil, antibiotic treatments for hypothesized causal spirochetes, specific diets like the Swank diet, and some treatment regimes, like Hyperbaric Oxygen and bee stings.
Such alternative approaches have a long history of use in the history of medicine and many advocates. These treatments often do no harm, though they can sometimes cost substantial amounts either in fees or because they are supported by funds coming from benevolent organizations that might be used more fruitfully for research.
Like some scientific treatments, there are also times when they have very devastating side effects, for example when someone who takes bee stings finds that they have allergic reactions. Less like most scientific treatments, alternative approaches have been used to take financial advantage of vulnerable people with MS.
People with MS are more vulnerable to false or misleading claims by practitioners of alternative medicine. Part of the reason is the desperation of people who are faced with the terrifying truth that our disease does not have a cure and is something that may reek havoc in the plans and expectations we have for our lives and futures.
The prospect of disability at any level is terrifying and while only a minority of people with MS get to the most severe levels of disability, everyone with MS is aware of this potential. This fear is a powerful motivator to try anything that may have the slightest promise of cure or improvement, sometimes without regard for cost or physical danger.
The other reason why people with MS are particularly vulnerable to such claims is that the effectiveness of treatment is hard to judge.
There are many spontaneous improvements in the course of the disease and many opportunities for someone to mistakenly or fraudulently take responsibility for these improvements. The disease is very unpredictable.
Nevertheless, alternative treatment should not be dismissed out of hand. Such treatments can have an indirect effect on the course of MS or its symptoms by enhancing the natural placebo effect that is very potent for all illnesses and in addition some may have an unquantified and unknown positive effects.
Alternative treatments are not without value, but they should take second place to those that have proven scientific research behind them.
Demonstrating effectiveness for any treatment is no small affair. Researchers spend countless hours devising often ingenious strategies to indicate what is effective in reducing discomfort or even in reducing symptoms.
Once devised, experiments utilize the experience of often hundreds of subjects, some taking the real treatment and others taking the placebo or fake treatment.
Reams of paper are consumed to keep subjects and researchers alike blind to who is taking which treatment so as to avoid bias and false results. When such experiments turn out to show a positive effect for a medicine or other treatment, one can truly count on this effect to work as claimed.
It is the confidence that we can have in scientifically demonstrated treatments that set them far apart from alternative treatments. For many of us this distance is so far that it appears silly or even foolish to follow what we see as the pied pipers of alternative cures.
It would seem in this way that to try anything but a proven treatment is a complete waste of time. Others will try anything that may have any small promise of usefulness. Often these folks were already skeptical of the claims of modern medicine before their MS diagnosis.
Many have been takers of vitamins and utilizers of health enhancers from conventional non-medical treatments like chiropractic to less conventional things like meditation or yoga. What is very important to remember is that the human body does respond to a certain degree to anything that we do to enhance our health.
In research this is a problem called the placebo effect and leads to the need for the double blind study. If someone has a headache and takes a sugar pill he or she believes to be aspirin or acetaminophen, he or she is likely to perceive that their headache is better in 10-15 minutes.
Sometimes in experiments human contact alone in the absence of any fake medicine is enough to trigger this placebo effect. In MS there can be real symptom relief that results from the belief that the treatment one is taking will help. What does this tell us?
One thing is clear; experimenters must be very careful to make sure the treatments they test are themselves making a difference beyond this placebo effect. But for the rest of us, who are not trying to prove something experimentally, it suggests that we ought to do some things to trigger our placebo response.
The placebo response is not something to disparage, but rather is a valuable way that our bodies work to heal themselves. One can say that a placebo has triggered the body's natural and potent self healing powers. Often the use of non-traditional or alternative medicine treatments serve to trigger these responses.
As such, they are directly valuable for those who chose to use them. Regardless of the possibility that alternative approaches may benefit us, it still remains important to distinguish these alternative approaches from the scientifically demonstrated treatments that are offered by neurologists and other scientists.
False hopes abound for those of us with MS. Alternative approaches should never be offered without significant caveats and explanations. Indeed, even scientific approaches can't be offered without substantial warnings.
When offering both scientifically proven treatments and alternative methods for managing symptoms care should be taken to avoid false promises or claims. If this is done consistently, it is unlikely that anyone will be offended by our discussion of any treatments - from the most sound scientific medication, to the most arcane, mystical or superstitious practice.
by: J. Lamar Freed, Psy.D., May 17, 1996.
This article may be printed or posted without permission, but not without attribution.
Dr. Freed is a psychologist in private practice in the northern suburbs of Philadelphia, Pa. He has been diagnosed with MS since 1993.