Well great, thank you for that nice introduction and it’s a pleasure to be doing this program tonight. I do all kinds of educational programs on a variety of topics and for a variety of audiences. This particular type of program is actually my favorite type of program to share this kind of information with people who have MS.
am going to cover information that was mentioned in the title to the program and then I'm going to expand to other approaches. In covering this large area, I am going to make mention frequently of alternative medicine or unconventional medicine. I think it's admirable that the MS Foundation has made efforts to provide good information on unconventional medicine.
And I think it's admirable that the forum tonight is open to discussing that topic, so I want to thank the MS Foundation for inviting me to do this program. Doing a program like this, up until the past few years, was sort of taboo. Sometimes, it was quite an uncomfortable feeling when I went various places to do programs. So it's nice that this is now more out in the open and people are talking directly about unconventional medicine and kind of mixing unconventional medicine with convention medicine.
And I've had an interest - a very in depth interest in this subject for about the past ten years and I used to do programs where I would cover dietary approaches and five or ten other unconventional approaches that people seemed interested in.
And then in doing those programs, people would always ask me afterwards, you know, that was interesting but of all the hundreds of different things out there, whether they're conventional or unconventional, you know, which ones do you think make the most sense.
So my talks have evolved over the years and the talk you're going to hear tonight is one where I tried to synthesize conventional medicine and unconventional medicine and give strategies, including dietary ones, for integrating those. That's really going to be the main focus of the program tonight. And as you'll see, built into that by necessity, are dietary factors that we'll consider in detail. So as you heard, I'm at the Rocky Mountain MS Center. And within that center we have a complementary and alternative program that I am the Director of and the information you're going to hear tonight was developed through that program.
Before I get started talking about conventional medicine and unconventional medicine, let me just define what the unconventional side of things is. Unconventional medicine typically refers to therapy not available in hospitals. They're therapies not typically taught in medical school. And then I have a book here that has a patient's definition of alternative medicine.
It says, "Those therapies which I have had to pay for out-of-pocket and never felt comfortable discussing with my physician." So, I think both of those definitions give a sense for what we're talking about tonight and that unconventional side of things.
What I am going to be referring more to tonight is actually referred to as complementary medicine and that means that the unconventional medicine is used in addition to conventional medicine. The mixing of the two is known as integrative medicine so that's conventional medicine with unconventional medicine.
And that's actually what most people who have MS do. They mix conventional medicine with some other kind of unconventional therapies. Alternative medicine is the term you see more often in the news or various other media and that term is usually used incorrectly. Alternative medicine means people are using unconventional medicine instead of conventional medicine. In the United States, that really is not a very common practice.
Then, the term that Chris referred to at the beginning of the program, CAM. That's C-A-M or complementary and alternative medicine. So you'll hear these various terms through the program tonight.
Just to give a little background information, the use of unconventional medicine appears to be high in people with MS and the general population in the United States. It’s probably about 50% of people who use some kind of unconventional medicine among people with MS. The use is probably 50% to 70%.
And then if you look at all people who have MS and just look at what kind of therapy they use, about 1/3 of people use just conventional medicine. And then it's about 2/3 of people who mix conventional medicine with unconventional medicine, so they use and they're practicing integrative medicine.
So I imagine most people who are on the phone tonight are practicing integrative medicine and probably - you may be doing it on your own and I think it's kind of interesting that most people are actively practicing integrative medicine but many people probably have not even heard of that term or didn't quite know exactly what it meant.
And then in terms of the use of alternative medicine, for people who just use unconventional medicine that's a very small number of people. We have done some large surveys through our center. There are other centers in the United States, Europe, Australia, Canada and these studies indicate that it's just a very - just a small percent of people with MS who practice alternative medicine.
So before I get into mixing conventional medicine with unconventional medicine. I just want to give some general precautions related to unconventional medicine. One of these is to avoid an area that's mentioned frequently in some alternative medicine books and that is that with MS you don't want to be activating the immune system.
We actually did a survey quite a while ago now, about eight years ago, where we went to various book stores in the Denver area, looked at the alternative medicine books, look to see what their recommendation was for MS and many of those books said that MS was an immune disease therefore you needed to take a dietary supplement to activate the immune system. And as many of you know, our treatment approaches in MS are actually the opposite.
We want to be toning down the immune system because the immune system already is too active. Another approach I think that can be helpful when thinking about unconventional therapies is to be a little bit of a psychologist, get a sense for where the person is coming from who is giving you information or what kind of writing you're being exposed to. I think there are some people out there who are kind of on a rebellion against science or conventional medicine and I think they're kind of driven by that rebellion more than any one desire to give people good information.
Then just watch for other sorts of, I'll call them tell-tell signs of things that should raise concern and one is the strict reliance on just people giving testimonials to a particular therapy, if there's very little information. If the ingredients are - claim to be – secret, I'd be concerned about that. If they claim that one therapy can help hundreds of diseases, I'd be concerned about that as well. And if the therapy is very involved, like needing injections or requiring hospitalizations, I'd be concerned about that as well.
So now I want to move on to the main part of the talk tonight and that's really talking about kind of the answer to the question that people came up to me after my programs in the past, like of all the hundreds of things out there that are conventional or unconventional how do you make sense of it all. How do you choose what might be best for your particular situation?
And that's a huge task to try to go through and pick out which approaches and, you know, what are these various approaches used for. So I've tried to organize this in terms of five different steps and I'm going to go through each of these five steps and try to show ways to kind of make the best of what conventional and unconventional medicine has to offer.
In coming up with an approach, I tried to be unbiased and try to have it be evidence based, try not to have prejudices about particular therapies. And then another important aspect of any approach is to make sure it can be individualized. So, I have built some choice involved in the particular approaches that should account for who you are as a person and what kind of orientation you have and also should take into account the different effects that MS can have on different people who have the disease.
So I've condensed all this down to five different approaches and I'll spend varying times on the different steps that are involved. So just briefly the five different steps, and this kind of jumps back and forth between conventional and unconventional, so the first step is the disease and medication so that's on the conventional side. Step two is a dietary approach. Step three is the wellness approach.
Step four is exercise and step five is an integrative approach to symptoms management so I'd now like to go through kind of step by step through these and like I said the first step is the conventional disease and medication and I'm not going to spend much time on this tonight. I think this is a very important step but it really is not the main focus of the program.
But I think it is important to recognize that the best evidence that we have for any therapy modifying the course of MS is with the FDA approved medication and the includes glatiramer acetate or Copaxone and it includes interferons which are Avonex Betaseron and Rebif. Another FDA-approved approach is a chemotherapy approach and that's mitoxantrone or Novantrone.
And then many of you are probably familiar with Tysabri or (natalizumab) that was released in November of 2004. It was voluntarily withdrawn from the market in February 2005, so about a year ago, because there was some concern with serious side effects. It's now been a year where they've gathered information on the medication and the FDA actually is in the process of looking at the information.
There should be hearings next week to decide the fate of Tysabri. There already has been approval to proceed with clinical trials with Tysabri. In terms of whether the drug will be released back onto the market for general use, it has not been decided yet so that should be and I imagine that'll be in the news towards the latter part of next week. So that's really all I'm going to say on the conventional medicines. Like I said, that's not the focus of the program tonight.
But I think that is a very important step so - and that was aimed at treating the underlying disease process. The second step is a dietary approach and if any of you have tried to read information on dietary approaches in MS it's incredibly confusing.
It’s very controversial and you can find opinions anywhere from diet has nothing to do with MS all the way to saying that diet is a cure for MS. The - and I'm going to give a fairly detailed description of what information is out there. I'm going to condense the results of hundreds of studies on the basic science and clinical side.
But before I do that, the conclusion of all the information I'm going to present is that if you consume a relatively high intake of polyunsaturated fatty acids that might decrease the severity of MS, so that's the bottom line in terms of the information that's out there. Let me first just give a little bit of background information. Now there are - there's a whole group of food stuff called fats. They're the saturated fats that are found in butter, like the fat on red meat, which puts it in the saturated fat category.
The ones we're talking about tonight are the unsaturated. Those come in the monounsaturated form like olive oil. The ones we're going to focus on are the polyunsaturated fats. It's abbreviated PUFA and that's polyunsaturated fatty acids. And then within the polyunsaturated fatty acid category there are Omega 3 fatty acids which typically are found in things like fish oil and Omega 6 fatty acids which might be found in things like sunflower seed oil, safflower seed oil. So the fatty acids we're interested in are polyunsaturated fatty acids and among those really the Omega 3 and Omega 6 fatty acids.
So now I just want to briefly go through all of the these different studies and, like I said, there's lots of scientific information in this area and a little less clinical information directly relevant to MS but there are clinical studies that have actually been done in this area. So first of all if you just talk about test tube type experiments the real basic immunology experiments, what these studies show is that the polyunsaturated fatty acids associated with Omega 3 fatty acids appear to mildly inhibit the immune system.
So in theory that should be helpful for a disease like MS, so that's the and as I go through these I'm going to kind of present the positive evidence and then the concerns about the evidence. So to make for polyunsaturated patty acids they appear to mildly inhibit the immune system and in theory that should be helpful for MS but the concern with that is it's just scientific evidence. You can't take test tube results and conclude that that's an effective treatment.
The next more sophisticated approach is to doing animal model studies and in these studies, especially with the Omega 6 fatty acids if animals are given more Omega 6 fatty acids they tend to have less severe form of a disease so that's also on the - and also a very positive finding. The concern is the animal model of MS is by no means a perfect model for the disease. It's really not actually human disease.
So if you take another step closer to the human disease you can do epidemiology experiments where you look at large populations of people and that you do - there have been a few studies where they've looked at the intake of polyunsaturated fatty acids and looked to see how common MS is in those population and both studies indicate that a higher intake of polyunsaturated fatty acids tends to lead to less - it tends to decrease of developing MS.
The concern with these epidemiology experiments is that they're not clinical trials. They don’t take two groups of people and very objectively assess the effects of a dietary intervention versus some controlled approach. So this is encouraging data but once again it's not the ideal approach. In other clinical trials there's an older dietary approach. Many of you are familiar with it I'm sure, called the Swank diet.
It was developed by Dr. Roy Swank in the 1940s. He did some incredibly long clinical trials, decade-long trials. And what he found, using his dietary approach which involved the severe or significant decreased intake of saturated fat and then increased intake of polyunsaturated fat, what he found was that this dietary approach decreased the number of attacks people were having over time and also decreased their level of disability.
He got some very dramatic therapeutic effects in the data that he reported. The concern is that, you know, he did these studies many years ago and he started the studies before it was absolute convention to have a placebo treated group, so he really didn't have any group to compare these people to that he followed over time, so that's a significant concern.
He actually had to compare people in the study to just looking at reports of people in the literature and how they're disease typically progressed, so some limitations to that study as well, even though the results are encouraging. Some of the formal clinical trails there were studies of Omega 6 fatty acids in the form of sunflower seed oil.
There actually were three studies done with this approach. Two of the three studies showed a significant decrease in the severity of attacks. There is also concerning but there is concern with the one negative study. And then in terms of the Omega 3 fatty acids, specifically fish oil there's an older study that was done in the 1980s and there was a trend for that to show beneficial effects but by formal statistical analysis that was not significant.
And then there's a more recent study looking at fish oil in combination with MS injectable medications indicating a trend for a beneficial effect but it was not statistically significant. So as you can see the way I presented things are very encouraging, positive findings with test tube experiments, animal model experiments, epidemiology experiments, clinical trial experiments but the definitive information is not yet available.
The way that I interpret this for my patients I tell them that more information needs to be gathered but if I were someone who had MS, I would seriously consider taking this kind of approach. I would not do it instead of conventional medication but it's something I would think about doing in combination with conventional medication.
To make this dietary change is something I refer to as kind of a modified Swank diet, where saturated fat intake is limited and then fish is consumed at a higher than usual rate, such as two to three times per week. And then there are a variety of supplements that could be considered in this area and I don't want to go through these in excruciating detail but basically in terms of trying to increase Omega 3 fatty acid intake, fish oil probably makes the most sense.
The FDA has looked at the data on fish oil and has actually reviewed data in terms of long-term safety. There is safety information out for the general population for seven or eight years and then fish oil has the Omega 3 fatty acid, EPA and DHA in it. That's the main constituent of the fish oil. Other products that have Omega 3 fatty acids include cod liver oil but it can have high levels of Vitamin A and variable levels of Vitamin D. With high intake there should be concern about concern about Vitamin A toxicity.
Omega 6 fatty acids come in a variety of forms. Sunflower seed oil is one form. Evening primrose oil also has Omega 6 fatty acids. And then a combination of Omega 3 and Omega 6 comes in the form of flaxseed oil. With these other approaches the safety of long-term use really has not been looked at. There are studies indicating that, at least for short-term use, these are well tolerated. There are some products I would be concerned about in terms of polyunsaturated fatty acids. Those include borage seed oil, which can have potential liver toxicity.
Black currant seed oil really has never been looked at in terms of safety related issues and the spirulina or blue green algae may have contaminants and they have variable content of polyunsaturated fatty acids. So that you can see as I go through these various approaches the fish oil approach probably is most reasonable. So if you do take this approach I would not do this instead of conventional medications.
I would talk with your physician or other healthcare provider about taking the approach but there can be some side effects and interactions with these supplements. It's also important to realize that if you increase polyunsaturated fatty acids you can deplete your body's levels of Vitamin E. So it would be reasonable to take some Vitamin E along with some kind of polyunsaturated fatty acid but it does not need to be mega doses of Vitamin E, so even a dose as low as 100 units a day is probably more than adequate.
So that's a second approach and the second approach is aimed at trying to push even harder to control the underlying disease process, kind of like or in the same way that the medications target the underlying disease process.
Another approach aimed at kind of pushing hard in terms of the underlying disease process is what I call a wellness approach. The term wellness is used so many different ways it's started to lose its meaning. What I mean is that it's very personalized. It's optimistic. It can create some empowered attitudes. It takes advantage of the mind-body interaction like you might see with a placebo effect in a clinical trial.
And I'll talk about all of this in a little more detail. So sometimes it's helpful to talk about what something is not to understand what something is so in terms of things that are not wellness, one of those would be a negative - the expectation of some kind of health outcome and there's actually something called a nocebo. That's the opposite of a placebo so it's a negative placebo and with nocebos sickness is actually caused by an expectation that someone will be sick.
So an example of this is - this was a very cool line of research this nocebo research. So there are various studies where they suggest to people that they're going to have some bad health outcome. So an example is a study where they gave people sugar water but they actually told people that it was going to make them vomit and what happened was 80% of the people vomited just by drinking sugar water.
So that's a small social environment, you know, the researcher, the patient and maybe a family member is there and there is sort of a mild negative health expectation with vomiting. So a few people and a mildly negative health expectation. Another question is what happens if you push that to the extreme. What if you have a really negative health expectation with that, what does that suggest and what if you have that kind of imposed upon you by your whole society, by your friends, by your family, and this is a very controversial area, but there are some reports in the medical literature of this.
This is what's referred to as voodoo death where some Shaman or witch doctor places a curse on someone and then typically within a day or two a person dies. There have actually been some autopsy studies where they've looked at people who have died in this situation and there are some documented cases where there wasn’t any poisoning. There wasn’t any trauma. There was no other apparent cause of death so this is surprisingly - it's still present in many parts of the world.
Actually Chris, at the beginning, mentioned that I was on the MSF Cruise last year. We actually - the cruise went through the Caribbean including the Dominican Republic and I had a chance to talk with some people from the Dominican Republic who had been to some actual voodoo ceremonies in Haiti and I won't give you the details but I was shocked by the things that they described during these voodoo ceremonies.
It seems like they were quite truthful in what they were describing. So in terms of this voodoo deaths it's really still not fully understood what the cause for this is but you can imagine that being just some extreme type of fear or some extreme kind of hopelessness. So that's really kind of pushing things extreme on the negative side. Please don’t go back to your doctors and tell people that the Rocky Mountain MS Center practices voodoo medicine. I'm just using this as an example. So we push the negative side to the absolute maximum.
Now let's go the other direction in terms of placebo effects. This is a positive expectation for some health outcome. If you look at the various clinical trials with the MS medications like Betaseron, Avonex, Rebif, Copaxone if you look at those trials all of them show that people have improvement after they're treated just with placebo. And if you look at the numbers the attack rate decreases by 15% to 40% in those clinical trails.
Now there may be multiple explanations for this. And one is a genuine placebo effect. It also could be just fewer attacks over time. That's another factor and then there's a statistical argument known as regression, which could explain some of that decline. There's an interesting placebo result if you look at the clinical trials for MS symptoms. There was a study that was done for fatigue where they looked at a medication we used to use.
We don’t use it so much now, known as Cylert or pemaline. In that study 30 - about 30% of people had beneficial effect with the medication and about 50% had benefit with the placebo, so the placebo actually did better than the active medication. And there are many other kinds of fascinating examples on the placebo side. And now let's push the placebo further, kind of like we did the nocebo and pushed that all the way down to voodoo death, let's push positive expectation further and there are lots of examples of this.
But one example would be optimism and there is a study done through the Mayo Clinic where they studied nearly 1,000 people and with optimism you can imagine that someone has positive health expectations generally and they include friends, the family, other people in the process of a large social network and a very positive expectation that they have.
And what they found in this study through the Mayo Clinic was that they followed people over 30 years and kind of divided them into people who are optimists, pessimists and people who had kind of a mix of optimism and pessimism. And if you looked at the mortality rate over the 30-year time period of the highest and the people who were pure pessimists, lowest and the people who were pure optimists and kind of an intermediate range for people who had a mix of optimism and pessimism.
So that - I think that kind of points to what I'm talking about in terms of wellness as opposed to something that's positive, empowering and include other people in the process with you. And there are lots of ways to pursue this. This really requires some individuality in terms of choice.
I'll give a few examples. If you're spiritual then religion and prayer can be a way to pursue this. Exercise for people who feel empowered and relaxed when they're exercising and that can be a good approach. A mix of spirituality and exercise can be found with things like yoga or Tai Chi. There are a variety of relaxation methods, such as meditation or imagery.
For people who use conventional medicine and are a little suspicious of it, it could be helpful to use some kind of alternative medical system like traditional Chinese medicine or Ayurveda for people who have some significant psychological issues, psychotherapy could be a reasonable approach.
And then it's interesting we don't use placebos in clinical practice or we don't deliberately use them but quite a few of my patients know that I have an interest in this area and there are a few every month who come in kind of begging me to get them started on some kind of placebo approach. So it would be nice if we could somehow do that but there are significant ethical issues there. So those - that's the third step that I wanted to talk about tonight. That's a wellness approach.
And so these first three steps for disease, medication, the diet, and wellness approach, those are all aimed at trying to push as hard as you can with conventional or unconventional approaches to try to control the underlying disease process, not the symptoms but the underlying pathology of MS. Some of those wellness approaches could also help on the symptomatic side.
Now I want to talk about the fourth step and that's the exercise approach. The previous approach with exercise and MS was basically to not exercise. It would just use up the limited energy that someone might have. That attitude really has changed over the years. And there was some very important studies done in the 1990s that showed that exercise really provided multiple benefits for people with MS.
The benefits can include improved strength, improved walking ability. There really are quite a few studies out there showing emotional benefits with exercise and I knew that there was a connection there but I - not until six or seven years ago I didn't know how many studies actually were out there so there are actually more than 1,000 studies of exercise and depression, most showing a beneficial effect. Exercise can also improve anxiety and the anger.
One of the paradoxical effects of exercise for people with MS is that it may improve fatigue and it may help prevent severe fatigue episodes. Exercise can also potentially help bowel and bladder function. People with MS can be prone to osteoporosis. Exercise is a nice way to prevent that. Exercise can also be helpful for heart disease. So there are a lot of benefits for exercise.
The exercise can be pursued with a conventional form of exercise, often that can be modified for people who have disabilities. Physical therapists are great people to work with to develop an exercise program. Also something that hydrotherapy or water therapy and that's basically exercising in water. The nice thing about water is that it can help keep you from getting overheated while exercising and that can be significant for people with MS.
Also it takes away much of the effects of gravity and that's especially helpful for people who have a walking disability.
Then, for those on more conventional exercise programs, there are some unconventional exercise programs, such as Tai Chi. A few studies have been done with Tai Chi in MS. These studies suggest that this might improve walking stability, might decrease spasticity, might help multiple other symptoms, so there are some suggestive results with Tai Chi, not absolutely definitive.
And then there is a very nice study done with yoga in people with MS and in this study people who were treated with no exercise, conventional exercise or with yoga and what was found was that people who received conventional exercise or yoga both had decreased levels of fatigue.
I hear reports that people, my own patients, reporting that yoga helps with anxiety, muscle stiffness, pain. I don't know of any - there certainly aren't any formal studies of those particular symptoms with MS. And then a very exciting area with exercise research is now looking at growth factors. Growth factors are proteins that are present in different parts of the body. There are some specific growth factors in the brain.
And there's been relatively recent research showing that initial studies were done in animals, showing that regular exercise program increases the levels of the growth factor. And growth factors have multiple effects that could be helpful for MS. They're anti-inflammatory so that can help with an inflammatory disease like MS. It can help protect nerves that are on the verge of being injured by some process such as MS. And then the growth factors can also stimulate new nerve growth for nerves that have already been injured.
So much of the research in this area actually has been done with other neurological diseases so in Parkinson's disease and in the animal models of Lou Gehrig's disease or ALS so the animal model of both of those diseases exercise actually decreases the severity of the disease.
Now there's some more recent studies in the animal model of Lou Gehrig's showing that actually exercise plus an approach that - (unintelligible) and other approaches increases growth factor levels. That actually is the most effective therapy in the animal model of Lou Gehrig's disease.
And then there are some studies with Parkinson's disease suggesting that regular exercise may decrease the risk of developing Parkinson's disease. So these studies raise questions as to whether, you know, could a regular exercise program and someone with MS increase growth factor levels on a regular basis and could that affect in a beneficial way the underlying disease process in MS. And that's an unanswered question at this point.
And then the final step is symptom management and this - what I want to talk about is an integrated approach using conventional medicine and unconventional medicine and this is a huge topic. This would take three or four hours just to cover this since there are many different MS symptoms. I would like to just talk about a few different or just in terms of the symptoms that people can have there are a whole variety.
Fatigue is one of the more common MS symptoms, depression, weakness and many others and then symptoms can vary. They can be present just with an attack or they can come on with an attack and stay with you but very day-to-day or week-to-week as to how severe they are. So what I want to do just to give you some strategies about assessing convention and unconventional therapies is just to go through a typical common MS symptom such as fatigue.
And if you look at the therapies that are out there, it's amazing how many different approaches there are. There are approaches on the conventional side. I think they want this and it's quite important at the diagnostic evaluation and sort out what the cause of the fatigue is and be sure it is MS-related and make sure it's not due to medications or some other medical problem.
In terms of treatment approaches, there's something called energy conservation and often occupational therapists can work with someone to conserve energy through the day by thinking about how you approach various activities when you do different activities during the day. And then there are medications that we use. One of the newer ones is Provigil or (modafinil). There's an older one known as Amantadine or (Symmetrel®). Some antidepressant medications, such as Prozac, may have an activating effect. And there are some other medical approaches used for fatigue so that's, you know, the conventional side.
On the unconventional side, there are some limited studies suggesting that cooling may be helpful for people who are heat-sensitive. Like I mentioned, exercise may also be helpful. There are some small devices that emit a very weak electromagnetic field. There are some suggestive studies that those may be helpful. Caffeine is used for fatigue by many people with MS. There are - there's never been any strictly formal study of that, you know, whether that's helpful.
B vitamins are used by some people with MS, and there has not been a formal study with that, so those two are kind of in the unknown category. And then unconventional approaches to be cautious about, one is Asian and Siberian ginseng. Both of those can potentially activate the immune system and there are not good studies for either showing that they help with fatigue. DHEA is also sometimes recommended for fatigue. There's no evidence that it helps for MS fatigue. They also can also potentially increase risk for heart disease and cancer.
Spirulina I mentioned before, the blue green algae. It's expensive and may have possible contaminants. There's no evidence and no study showing it helps with MS related fatigue. So I've kind of quickly given an overview of the different therapies on the conventional and unconventional side that you could consider for MS related fatigue. And that's only a partial list.
So it gets quite confusing and we have through our center wondered what therapies people find helpful for different MS related symptoms. So we've been able to address questions of conventional and unconventional therapies for particular MS symptoms and also address other questions of relevance to MS through a Website and this Website addresses unconventional therapies and talks a lot about the integrative medicine approaches to MS.
It's a very detailed site. It's ms-cam.org, so it's ms-cam.org and that's the alternative medicine website at the Rocky Mountain MS Center. We now have more than 25,000 users on this site and there is MS relevant information on more than 40 different therapies. We have a lay version and there's also a version for health professionals with references to the medical literature - scientific literature.
There's also a forum where people can discuss various approaches that they have tried and then through this website we have an email survey system and that's how we're able to access people's experiences with different alternative therapies. We did a survey a couple of years ago where we asked people if they had fatigue and then tried to sift through to identify who appears to have MS related fatigue and then (unintelligible) MS related fatigue we ask what kind of response they've had, good or bad, with various conventional and unconventional therapies.
The detailed results of our information on fatigue and all the survey results are available on the Website if you'd like to see them. I'll just briefly summarize them tonight. So Provigil, that's the medication I mentioned. That was found to be helpful for about 90 cooling and fatigue management or energy conservation and that was helpful for about 80% of people.
One of the other medication approaches helps and that's Symmetrel or Amantadine and that helped about 70% of people. Exercise or yoga helps about 60% of people. Coffee, and this is the only study I know of coffee or caffeine and MS related fatigue, we found that about 55% of people had a beneficial effect with coffee.
And coffee actually did a little better than Prozac but Prozac helped about 47% and then Vitamin B12 and Vitamin B complex and that was a positive effect for about 40% of people. Now this was not an absolutely rigorous clinical trial, this would be people's self-reported response. This is retrospective information, that is, people kind of recalling what response they had, so it's not perfect, like the clinical trial information, but I think it's interesting to know people's actual experiences in the real world with these various approaches.
If you think of all the results that I just gave, you can imagine some kind of integrative approach where you have some kind of regular exercise program or yoga to try to exercise on a regular basis. You also go to Starbuck's every morning to get your coffee. That's just a joke. I don’t have any financial connections to Starbuck's.
And then for people who are heat-sensitive, especially in the warm months, cooling strategies would be important to have available. And then for days, or also just on a regular basis, to have - be thinking about the energy that you use with energy conservation approaches and then for days when you have more severe fatigue to use a medication such as Provigil or modafinil.
So you can see what I just mentioned is kind of jumping back and forth between the conventional and the unconventional. So that's the symptom management approach. Like I said, that's a huge category and I just kind of gave a brief overview of how to approach that with the fatigue side of things.
So these last three steps of the wellness approach, exercise and symptom management, that's aimed at controlling the symptoms and then disease medications, diet and the wellness approach also that's aimed more at trying to control the underlying disease process.
If you want more information, there is all kinds of information on the website that we have at the Rocky Mountain MS Center. We, like I said, now have more than 25,000 users, people from all 50 states. We have, I think it's more than 70 different countries represented, in terms of the users that we have. It's a very large group of people interested in the subject and sharing information. Another information source is a book I've written that Chris mentioned, Alternative Medicine and Multiple Sclerosis.
That's available through Demos Medical Publishing. And then there are various other references and there are detailed references to the medical and scientific literature on our website for the book that I mentioned.
All of the royalties from that book go into our alternative medicine program at the MS Center and that money is used to support developing further information. I would like to thank various collaborators. Tom Stewart, who has been very helpful through development of this whole program. We've received support from multiple drug companies who have provided support just to help develop this program.
Rocky Mountain MS Center has provided much of the funding for this program and then I'm sure some of our website users are out there and I want to thank you all for participating and sharing any experiences you have with unconventional therapy. So I'd like to end with a couple of thoughts.
One is that there is limited information on unconventional therapies and I think sometimes people have this sort of knee jerk reaction like they're all positive and they're all negative about alternative medicine. I hope I've shown that you really need to think about each particular therapy in the context of a particular disease like MS and then if you do that, some look promising, some don't look promising at all, and on nearly all, we need to do more research to understand further.
But even with the limited information we have I think there are ways to safely and wisely mix conventional medicine with unconventional medicine. And I hope I've given you some strategies to do that in the program tonight. So I think with that I'll end and we have time for some questions. |
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