Johns Hopkins Fatigue Research Study

Several weeks ago I got an email from a research nurse at Johns Hopkins asking if I was interested in participating in an educational study about how fatigue impacts MS patients. After a few exchanges to find out more about the study, I found out it would involve a couple of short intake surveys, 8 educational sessions conducted over the phone, and another survey after the sessions were complete. I like learning and I figured the only thing I had to lose by participating was a bit of my time so I signed right up.

This study was first conducted at the University of Washington by Dr. Dawn Ehde and is called Take Charge of My MS. Dr. Ehde put together a handbook for participants and gave permission to the research nurse at Hopkins to use it for her own study. This handbook is filled with lots of great info and resources. It is set up by session topics: intro to study, fatigue, understanding pain, mood, sleep and MS, nutrition, activity, and MS, communication and healthcare relationships, and social support. Each session has facts and info about the topic with some short readings at the end for me to read on my own. During each session we go over the info together and the nurse asks me lots of questions about how each topic relates to me personally. The handbook states that the purpose of this study is to give me information about different symptoms that MS patients experience, learn about options and strategies for improving the symptoms, find out more about how other aspects of my life impact my symptoms, and to give me ideas for how to make positive behavior changes that can improve my health and well-being.

I am so glad that I decided to do this study. The nurse is great and I am learning so much more than I thought I would. It has also really made me look at some of the ways that I have not been taking having MS seriously and the ways I have been pushing myself too hard. I learned about the top three hypotheses for why MS patients have fatigue: changes to the central nervous system, changes to the immune system, or changes to the endocrine system. I learned that the emotional aspects of pain take place in the limbic system—the structures in the brain that deal with emotion, memory, and behavior. I learned that steroids—which are often used to treat MS flare ups—can cause mania and depression. When we talked about relaxing drinks in the evening I was given the nurse’s grandmother’s recipe for warm milk (heat milk on the stove with cinnamon, nutmeg, and honey). One of the biggest take aways I have gained from participating in this study so far is that there are a lot of negative feedback loops that one can get stuck in trying to manage the symptoms of MS and that the best way to not get stuck in the negative feedback loops is to be aware of them and make better decisions throughout each day.

When we first spoke, the nurse explained that she has worked with MS patients and my neurologist for over a decade and how he helped her get the funding for this study when the pandemic hit the nation. For some reason hearing all that was reassuring, for all it’s institutional faults it is good to hear that the people support and encourage each other there. She has been so awesome to talk to, just in general but also I am learning so much more than I expected I would during the sessions. She has gone way above and beyond her role as a research nurse during this study. She stepped right up when I had some not so fun side effects from the generic version of the medication I take.

During the course of this study, a generic of the medication I take to treat the MS was put out and my insurance company was no longer willing to pay for the name brand so I had to start taking the generic, which is a fairly common practice. But after two rounds of intense abdominal pain within the first week and a half of switching to the generic I was wondering if other people experienced the same thing with the switch from brand to generic. So I sent a message to the neurologist through the MyChart system to start the conversation about being able to switch back to the brand name medication. The very next day in one of my phone sessions with the research nurse and before we even got into the study part of the session she asked me about the side effects because she had seen my message in the MyChart system. She explained that they call it a “treatment failure” when that happens and that they could get insurance to approve the brand name medication because of it. She told me not to worry, that she had a really good track record of getting insurance to be willing to cover the brand name. And she was right, about a week later I was able to reorder the brand name medication.

I feel like this research nurse went above and beyond for me. She has not been involved in my regular care or treatment and my interactions with her have been strictly related to the study. It meant a lot that she saw the MyChart note about medication side effects and got involved to make sure it was taken care of. People from Hopkins took time out of their busy days to make sure that I would get the medication that worked better for me and to make sure that the insurance company would cover it. How incredibly lucky am I? That easily could have been a fight for someone else; a fight with the doctor, a fight with the insurance company, a fight that could take months to resolve. But I didn’t have to fight to be heard, I just was and by someone I did not expect. Going through the study with her and the general experience with John Hopkins this past year has been incredibly humbling. Something about this pandemic has humanized a lot of the folks I interact with from Hopkins and while I still have anger for how messed up the medical system is I can see how these folks are trying to give me the best care they can even though the system is messed up.