I recently received a question from a health care journey follower with progressive Multiple Sclerosis asking me a profound question. To paraphrase here is essentially what she asked:
I am a 55 year old woman with progressive MS. I’ve tried numerous disease modifying drugs and either not tolerated them or not benefited from them. I eat well, I exercise regularly and I try to remain positive but I don’t know what else to do. Please provide some advice on what I should do.
Until yesterday I did not know how to answer this question without the usual platitudes. Perhaps I was just feeling down; after all, it is easy to let this disease bring you down when you see people every day wanting answers to questions for which there are none, as of yet. But then I received a copy of Louisa Kasdon’s recent article in the Boston Globe about her trip to China with her husband Michael. Follow the link below to the article and once your read it, you will know what to do.
Michael, who is confined to a scooter with primary progressive MS, used to be a patient of mine in Boston. Louisa and Michael are brilliant, witty, resourceful and lucky to have the means to live well. But these characteristics do not define their success with life or with MS by any means. Despite their own setbacks and tragedies - and we all experience them in life- Michael and Louisa are defined by their dedication to living, savoring every day and every experience. By living within the moment and savoring those moments and relationships, they maintain an optimism and a hopefulness about life that is an inspiration to us all. When Michael was under my care, a typical visit to the clinic usually began with both Louisa and Michael querying me about my family, my health and my happiness, often ending with an invitation to dinner, which I always accepted given Louisa’s exceptionable abilities as a chef and hostess. It was only after they were satisfied that all was well with their doctor that we could proceed with a discussion of Michael’s MS related problems. Following my evaluation, Michael, who is a physicist and engineer, would provide suggestions on inventions or gadgets that could benefit people with physical limitations. I can almost imagine Louisa and Michael inviting the four star general in their story to lunch so they could further discuss ways to help open the exposition they were visiting to more disabled visitors. So read it and try to emulate Michael and Louisa, as I try every day.
By Revere Kinkel MD
Director of the UCSD Multiple Sclerosis Program
How to find solutions and even a cure?
You can start helping now with MS HealthAllies and possibly win an award. http://www.mshealthallies.com/
We all know the power of the Internet to collect, sort, analyze and update data, and we generally accept the validity of the information we glean from our searches; Internet search references such as Wikipedia are now acceptable in school research projects at all grade levels and we share and learn from our social networks, particularly Facebook, on a daily basis. “To Google” is now considered a commonplace verb --an eponymous anthimeria for those of you who are etymologists -- referable to any internet search. Many of us continue to fall into the all too human habit of putting too much faith in single, unidentified sources (think blogs identified only by a username), but this is becoming far less common with time and experience.
Our smart phones have increased our flexibility and power to share data on a nearly continuous basis (also referred to as real-time data); they can track and notify vendors and contacts regarding our locations, sales deals, traffic conditions, our activity levels, our mood states, our caloric intact and even our heart rate and temperature. Tweeter feeds can even be used to identify and track the spread of epidemics.
In fact there are really only three hurdles to surmount before we recognize the full power of the Internet to collect, analyze and share data that provides useful information to us in our personal lives, especially as it relates to our health: data harmonization, maintenance of privacy and our own imaginations. The need to harmonize the data collected in health care encounters to allow linking of data sources (ex. different electronic medical record systems) or to catalog large datasets is being addressed through the nationwide PCORI network funded through the Patient Centered Outcomes Research Institute (PCORI) and the BD2K (Big Data to Knowledge) Project funded through the NIH.
Privacy issues will likely be with us for a long time but can be addressed through readily available mechanisms such as site verification, firewalls and strong passwords with ID/password confirmation. It is also important to separate crucial personal identifiers that link all your data sources. Unique to health related data is the requirement of HIPAA compliance and the requirement of providing adequate consent for research that is flexible and easy to revoke, if necessary.
How does this relate to the Health Care Journey website? The website is currently a vehicle for sharing information from validated and/or identified sources (people like me or the NMSS) through links to other websites, content we create or blogs that we write. All of this information may contain opinions not completely validated by controlled research studies, but you have the ability to know exactly who is the individual or individuals providing the links, creating the content, or expressing the opinion on a blog, and may choose, based on the biographical information and disclosures provided, to apply different weights to the opinions expressed.
This function of the HealthCare Journey website, what we call a “virtual MS Center”, is important but it limits your ability to learn from each other and our ability to learn from you. Most of the interactions on the site revolve around you the reader needing an answer to a question and receiving a prompt direct answer within the limits of the medium we are using. To be truly powerful and learn from your collective experience and unique characteristics requires additional functions on the website that will be introduced in the next few months:
First, we need a secure, personal site for people with MS to provide any information they desire about themselves and search for people with similar issues, concerns and experiences. We have just launched a beta version of this site, called MS Health Allies. Why is this important?
Accommodating to MS and repeatedly finding solutions that work for you and your loved ones is hard and requires a quality that psychologists call self-efficacy, defined as the belief that an action will have a desired result AND the belief that you will be able to sustain this action. Although I wrote a prior blog on this issue, the importance of this topic warrants repeating the main steps to achieving and maintaining self-efficacy:
MS HealthAllies will allow you to connect with other people with MS individually or you can reach out to many and form your own group. You can run these groups, develop rules of communicating and rules of behavior; provide links to useful information for your group. Your collective experience will create an amazing resource that allows people to achieve their goals with greater ease in shorter time intervals. The more you share or, as the techies call it, the greater the granularity of the data you provide, the more you and others will learn from one another in your journey.
There is one unique feature of MS HealthAllies that is not available in any other social network site. We have created a button on the site that allows you to directly ask an MS expert in our Virtual MS Center a question. Let’s say you are communicating with one or more MS HealthAllies’ members about a topic and this discussion raises a question about an unresolved issue or a concern about the validity of the information being discussed. Simply press this button and ask a question and we will respond to the best of our ability as soon as we can.
You will hear more about this effort over time as we role out individual components; for now stay tuned to notifications from the website and sign up for the beta test version using the link below. In the very near future we will announce a sign up challenge with awards for certain activities. Without giving away too much information let me hint strongly that there will definitely be awards for people who sign up for the beta test and continue to participate after the role out of MS HealthAllies.
You can sign up here http://www.mshealthallies.com/
Most MS specialists are open to the idea of various supplements, particularly vitamin D. The reason supplements are not at the top of the agenda items during a routine clinic visit is the relative lack of data behind them. That is not to say that supplements can't help the MS disease course, it just means that the data is limited to come to that conclusion when compared to the FDA approved disease modifying therapies.
The field of medicine is in an era of evidenced-based medicine. Physicians spend much of their time outside the clinic keeping up to date on clinical research that impacts their patients. With this data, we have to balance the significance behind the research data in terms of a therapeutic's efficacy (ability to positively impact the disease) compared to the risks (in regards to safety, tolerability, and drug-drug interactions). If the evidence if there, and the balance is favorable, we share this in clinic which helps patients make informed decisions about their care.
Although this is a responsible way to deliver medical care, we have to acknowledge that there is much we don't know, particularly around supplements where the data is not as strong (or completely non-existent) to guide recommendations. The FDA does not regulate supplements (aka, nutraceuticals or 'complementary alternative medicine'-CAM) the same way pharmaceuticals are. It is not uncommon for supplement manufacturers to make claims about their products that are not supported by rigorous scientific evidence, but around a couple anecdotes. Simply put, anecdotes do not equal proof. Moreover, supplements do have potential to interact with prescribed medications, so it is important to let you doctor know everything you are taking.
It is my belief that supplements are acceptable if there is no significant concern for harm (particularly in regards to drug-drug interactions with other medications you are on), and there is a plausible scientific mechanism that may confer benefit for MS. Supplements such as vitamin D and fish oil appear to have the capacity to influence the immune system (or modulate it). For instance, there are vitamin D receptors on cells of the immune system (ie, t-cells, b-cells, etc.). That fact right there makes vitamin D biologically plausible to help MS. Add this to the fact that there are observational studies that have shown an association between low blood levels of vitamin D and more active brain scans and clinical relapses when compared to patients with higher levels of circulating vitamin D.
Taken together, this is strong circumstantial evidence that vitamin D is helpful for the MS disease course. BUT... this is where the story diverges from the FDA approved therapies. Rigorous scientific evidence demands a head to head trial of the experimental therapeutic to placebo in order to establish a "cause and effect" relationship which effectively "proves" that a therapeutic is beneficial. Association studies cannot do this, only prospective placebo controlled trials (or active comparator trials) can do this. All of the 12 FDA approved therapies to date, have exceeded this requirement. The supplements have not.
The reason for this comes down to money. Placebo controlled trials are extremely expensive. Since the FDA does not regulate supplements the same was as pharmaceuticals, anyone can market a supplement without having to prove their product's effectiveness. Because of this, manufacturers are not going to put millions of dollars into clinical trial testing since they will never recoup that money by selling the product (which is especially true if the testing proved no benefit over placebo).
As physicians who work under the premise of evidence-based medicine, we would like to see placebo-controlled data on the supplements because we want to be able to provide our patients with the best information on the subject. In the case of vitamin D, the circumstantial evidence is so compelling that there are such trials underway. These are physician/investigator initiate trials. The final verdict is still out.
With that said, I frequently recommend vitamin D in clinic because it has known benefit for bone health, may very well help MS, and has very little down-side in regard to side effects/risk. I have primarily discussed vitamin D in this blog post, but I would encourage you to read what Dr. Allen C. Bowling has written and discussed on the subject. He is a MS neurologist in Colorado who has published actively on CAM therapies and discussed what evidence there is behind them. In fact, I believe he has published a book on the subject for MS patients. This is such a huge topic that it can't all be discussed here, but I would encourage you to check out what Dr. Bowling has written about the subject. In fact, here is an extensive interview he gave: http://www.msfocus.org/article-details.aspx?articleID=310
I will end by saying that because I feel strongly that evidence-based medicine should drive MS care, I cannot recommend CAM as the sole therapy for a patient with relapsing MS. If CAM is to be used, it really should be in conjunction with a proven MS therapeutic. I would encourage readers to also look at Dr. Kinkel's blog that discusses this topic: http://www.healthcarejourney.com/q--a-for-virtual-ms-center/platform-therapy-for-ms-5-essential-steps
A. Scott Nielsen MD MMSc
Virginia Mason Multiple Sclerosis Center
The medical information and opinions on this site are provided as an information resource only, and are not to be used or relied on for any diagnostic or treatment purposes. The information and opinions expressed do not create any patient-physician relationship, and should not be used as a substitute for professional diagnosis and treatment. Please consult your health care provider before making any healthcare decisions or for guidance about a specific medical condition.