Neurology Insights – Helpful Information for Optimizing Your Neurology Office
This site is dedicated to office-based Neurology and PM&R practitioners and support staff.With the changes in healthcare, new opportunities and certainly new challenges face our customers. We will provide you—our clients—with helpful and actionable tips and tools on a weekly basis. Our hope is that these articles might help you continue to thrive in your office-based medical practice.
The introduction of e-cigarettes brought promise for good and bad. We hoped it would be the answer for smokers who really wanted to quit, offering a way to focus on tapering the nicotine addiction while reducing other substances, such as tar, that cause so many health issues. E-cigarettes also offer an outlet for the physical habits that accompany smoking.
But few studies have shown that e-cigarettes actually help people quit smoking. Some show they don’t reduce cigarette use, and a couple even suggest they increase cigarette use.
In addition, concerns over e-cigarette use among teens have been front of mind since their introduction. Vice reported way back in 2014 that there were 460 brands selling 7,700 flavors of e-cigarette juice with names like Atomic Cinnamon, Sour Apple, or Lava Flow. It sounds suspiciously like a new product targeting a young, untapped market rather than a smoking cessation product targeting established smokers.
At the American Academy of Neurology meeting last week in Philadelphia, Frances E. Jensen, MD, author of The Teenage Brain and Chair of the Department of Neurology at the Perelman School of Medicine at the University of Pennsylvania, mentioned e-cigarettes in her talk on The Teenage Brain: Neuroscience You Can Use. She pointed out that because of their brains’ increased plasticity, teens get addicted faster than adults (they learn faster, too, but that comes at a price, apparently). Jensen mentioned that a single JUUL cartridge contains 55–60 mg of nicotine, comparable to an entire pack of cigarettes. Marketing, plus a higher susceptibility to addiction, plus greater amounts of an addictive substance seems like a bad formula for our teens.
The report revealed that 35 cases of seizures, mostly among teens and young adults, occurred after e-cigarette use between 2010 and 2019. While this number may seem small compared to the total number of e-cigarette users, the FDA is concerned by the cases.
There may be no direct link between the reported seizures and e-cigarettes, but the concern is that seizures are a known symptom of nicotine poisoning. If e-cigarettes allow inadvertent increased ingestion of nicotine (see JUUL nicotine content above) or if people are intentionally using the product to take in higher levels of nicotine, this is a relationship that needs to be examined.
The FDA is urging people to report negative effects after vaping to The Safety Reporting Portal. With more data, the agency hopes to be able to determine whether there is a link between e-cigarette use and seizures. If a link does exist, they hope to discover common risk factors, or characteristics of the e-cigarettes themselves, that contribute to the problem.
For the neurologist, or any physician caring for patients with seizures, e-cigarette use is taking on a more significant part of the patient history. It will be years before a clear relationship is defined, if one exists at all. But attention from physicians will help illuminate any relationship that does exist, providing better information to keep patients, especially adolescents, safe from the bad, even if it is disguised as good.
“I would have thought more people would tell their doctors,” says Dr. Nina Sanford on her findings that 29 percent of cancer patients using alternative medicine during treatment don’t disclose its use. Dr. Sanford is an assistant professor of radiation oncology at the University of Texas Southwestern Medical Center, and she is lead author of a study just published (April 2019) in JAMA Oncology.
Despite a high use of Complementary and Alternative Medicine (CAM) among neurology patients, neurologist Sarah Mulukutla, MD, MPH, says, more than half of those patients are not telling their providers. “So what actually is going on, is that we have two separate healthcare models.” We’ve heard this before.
The disconnect between these two models of healthcare (CAM vs allopathic care) means that when physicians are deciding on the best treatment, they are missing half the picture. For cancer patients, who according to the JAMA study seek out CAMs at a higher proportion than others, this can be life threatening. Sanford cites the potentially adverse effects that high levels of antioxidants (in herbal supplements) may have during radiation treatment.
According to Sanford and her team, herbal supplements were the most commonly used CAM in her study, followed by chiropractic or osteopathic manipulation, massage, yoga, and mindfulness/meditation. The latter of these, Sanford acknowledges, may be beneficial in dealing with the stress of cancer treatments.
Sanford’s cross-sectional study involved analysis of data from the Centers for Disease Control and Prevention’s National Health Interview Survey. Of the 3,000 participants reporting a history of cancer, one third (33.3%) reportedly used CAM in the previous 12 months. Of that third, 29.3 percent did not disclose CAM use to their physicians. The most common reasons for non-disclosure were that their physician didn’t ask or they (patients) didn’t think it was relevant. It is over that last finding that physicians may have the most control.
Americans spend about $30 billion out-of-pocket on CAM per year, and that appears to be growing. With this level of buy-in, it’s safe to say that CAM isn’t going anywhere, so to improve transparency and patient safety, it’s up to physicians to initiate a dialogue about it. Mulukutla and other members of the American Academy of Neurology’s (AAN) Section on Neurohealth & Integrative Neurology are trying to help neurologists do just that.
“Integrative Neurology is a group of physicians that are looking at the evidence base for various types of complementary therapies,” said Mulukutla at last year’s annual AAN meeting. The academy offered a CME-accredited course on integrative neurology at their 2018 annual meeting, and they are offering the course again this year. “The first step,” says Mulukutla, “is actually changing the dialogue from a disease-based model to a health-focused conversation.”
Shifting the discussion toward wellness may encourage more discussion about alternative treatments. It is also an opportunity to remind patients that you share their goal of achieving optimal health, and that all their pursuits toward that goal (including CAMs) are relevant to discuss with you. Let the non-disclosure rates in the JAMA study be a reminder that what may seem obvious to you may not be to your patients.
We are just days away from the annual meeting of the American Academy of Neurology (AAN), being held in Philadelphia this year. But we are already weeks into the buzz about it on Twitter. The hashtag for the conference, #AANAM, started showing up in early April in tweets from organizers, speakers, and future attendees.
Here is one:
The author of this tweet, David Evans, MBA (@davidevanstx), is a healthcare executive we interviewed for a post about practice management after he spoke at the AAN conference in 2018. What he and other #AANAM users know is that using Twitter before, during, and after a medical conference is a terrific way to leverage the platform. It is a unique opportunity to make your voice heard and to get value from the conference beyond the days you attend.
The AAN is so enthusiastic about this added value that they have set up a virtual scavenger hunt (with prizes) to encourage the use of Twitter and Instagram during this year’s conference. There is more information on this as well as their other tips and tricks in this guide to using social media during the annual AAN meeting.
If you are new to social media in general or Twitter more specifically, now is a great time to give it a try because you’ll get big bang for your effort. By taking part in activities like AAN’s scavenger hunt or otherwise using the hashtag #AANAM in your tweets, you will be tapping into a larger-than-usual group of your peers eager to share and connect. You may even find out about special events or meetups not included in the official conference program.
It isn’t often that so many people who share your specific professional interests are gathered in person at the same time and place. Yes, you will meet people in the sessions and probably even in line for Starbucks in between, but by using a social media platform like Twitter, you can find even more members of your tribe. “Tweetups” are one way to do this.
A tweetup is an in-person meeting on a specific topic that is arranged ahead of time on Twitter. It is an opportunity to turn virtual colleagues into real ones. “Tweetups” are easily arranged. Jeff Kraakevik, MD (@ohsuneuro), a neurologist and early adopter of social media, says, “At the last Movement Disorder Society meeting we had a ‘Tweetup.’ There were maybe 10 people who showed up—a bunch of movement disorder neurologists.” And if you know anything about how niche this field is, 10 is quite a good showing. Kraakevik says that meetups like this can expand your professional network and lead to new opportunities.
Live tweeting is another way to make use of Twitter during a conference. Here, a session attendee tweets out some particularly insightful or cogent argument made by a speaker, in real time. The tweet should include the speaker’s name and Twitter handle (ex; @ohsuneuro) if they have one, and the hashtag for the event. Here is an example of a live tweet from a session on stroke care at the 2018 AAN meeting:
Expanded Session Discussions
You know how at the end of a really good session, there is usually a line of people waiting to ask questions? You probably also know that there often isn’t enough time to get to everyone. Twitter offers a way to expand discussions on hot topics beyond the session’s time slot. If the speaker is on Twitter, you can probably even ask them your question directly. This way everyone who reads it can benefit from your one-one interaction.
Expanded discussions are usually precipitated by some of the live tweets made during a session. Using relevant hashtags and twitter handles, these discussions are opened up to more people through simple exposure on Twitter. Experts in the field—even those unable to attend the conference—from across the globe may weigh in, expanding the discussion even further.
There is no doubt that the use of social media in and around medical conferences can be a really good thing. And its use is becoming increasingly popular. However, like most things medical, it does not come without a few warnings. Everything you put out there on Twitter is public, so you need to conduct yourself in a professional manner and follow HIPAA guidelines.
Come By and Say Hi at AAN 2019
We, the creators of the Neurology Insights blog (#neurologyinsights) will be at the AAN conference this year, and we’d love to meet you! Come by the Ambu booth in the Exhibit Hall and say Hi. While you are there, we’ll be offering quick, 5-minute tutorials on how to utilize our free patient education newsletter. This unbranded newsletter focuses on a different topic each month, and provides your patients with helpful information in short, easy-to-read articles along with a patient education video.
When the Pokémon Go game launched a few years back, there was much talk about the possibility of it creating healthy habits by getting kids moving around in the outdoors. But Pokémon Go seems to have gone the way of most video games—a fun distraction at best, a dangerous habit at worst. But the idea of video games providing health benefits isn’t dead, and in fact, new research demonstrates a potential role for them in stroke rehabilitation.
Specifically, scientists at Northwestern University’s Feinberg School of Medicine wondered if there was a way to aid rehabilitation by providing feedback through a video game, the idea being that we learn through trial and error, with feedback being the key to learning from the errors.
Much of the motor difficulty stroke patients experience is because their muscles abnormally coactivate so that the action of one muscle works against the action of another. So the researchers developed an 80s-style video game that provides feedback to help these patients learn from their movements.
The concept is simple. If the patient is able to move the cursor in a strictly vertical or horizontal plane, it means they successfully overcame the abnormal coactivation of muscles with that movement. But if their motion moves the cursor diagonally, the muscles are working against one another. As they move the cursor, they get immediate visual feedback and can adjust accordingly.
The scientists studied the effects of using the video game, and the research was published on March 19, 2019, in Neurorehabilitation and Neural Repair. Researchers enrolled 32 patients with moderate to severe impairment after stroke. The disabling stroke was at least six months in the past for all patients, with an average time since stroke of six years. The results were exciting and even unexpected. Patients gained an average increase in active elbow extension of 11 degrees. For severely impaired patients such as these, the intervention is ideal because it requires such a small amount of muscle activation. Almost any patient can engage in this activity, even when standard physical therapy is beyond their ability or has concluded, which would be the case after six years. In addition, access to this game therapy at home would allow them to engage in the activity far more often than standard rehabilitation would provide.
The widespread application of this technology is still well into the future, but it promises to offer an entry to rehabilitation that is accessible to the severely impaired, affordable for most budgets, and available in the patient’s own home, overcoming the most common barriers to outpatient rehabilitation.
In this digital age, we worry about the effect of screen time on developing brains. But if we shift our gaze from youth to the elderly or disabled, the possibilities are exciting, with a number of potential benefits from playing video games. It’s exciting to think that improved health may end up being one of those benefits.
Primum Non Nocere. In practice, “First do no harm” might be more accurately stated “First do no relative harm.” Medications have side effects and surgeries have complications, but an ethical physician counsels a patient on a course of treatment in which the benefits outweigh the risks.
Neurologists who prescribe disease-modifying therapies (DMT) for multiple sclerosis (MS) know this all too well. While DMT can slow disease progression, these medications can produce significant and sometimes dangerous side effects. Here balancing risks and benefits to “do no harm” is not a simple or straightforward task.
For this reason, the American Academy of Neurology released guidelines for the use of DMT in MS in 2002, with updates to the guidelines released in April of 2018. They offer significant guidance on starting, switching, and stopping patients, with a heavy emphasis on counseling patients. The guidelines recommend stopping DMT in patients who do not have ongoing relapses (or gadolinium-enhanced lesions on MRI) and have not been ambulatory for at least 2 years. The guidelines also acknowledge that there are no randomized-controlled trials to address this question.
In spite of these recommendations, DMT use in patients with secondary progressive MS (SPMS) actually increased between 2000 and 2009. A study presented as a poster at the Americas Committee for Treatment and Research in Multiple Sclerosis (ACTRIMS) Forum 2019 found that DMT use in SPMS increased from 47.2 percent to 51.5 percent during the period, even after the AAN guidelines were released. This means that many patients are shouldering a high cost of treatment and at risk for adverse events while the benefit side of the risk-benefit scale grows lighter.
Study author Revere Kinkel, MD, acknowledges that a clinician may have good reason to deviate from guidelines in individual patients. But, according to the study, “prescribers were not aware of or were not following evidence-based guidelines for individuals with non-relapsing courses, over age 54, and severe disability.” So physicians must consider, and patients must be educated about, the risks and potential benefits of DMT. They must also consider its cost, which the study found averaged around $16,000 to $19,000. All the options must be fully discussed so a shared decision about treatment can be reached by patient and physician.
Physicians must remember that these are guidelines to consider along with all the other factors used to make treatment decisions. In the end, more evidence is needed, as no randomized clinical trials address the issue. Until that time, more education is needed to ensure patients receive the most appropriate treatment for their circumstances. Strong evidence and consistent education are the best route for helping the sick when it’s tricky to “do no harm.”
Indeed, the cry for increased nutrition education among physicians is getting louder. In an article out this month (March 2019) in JAMA Cardiology, Devries et. al. say, “Requirements for meaningful nutrition education in all phases of medical training are long overdue.” The authors put an emphasis on cardiac issues like [type 2] diabetes and cardiovascular disease, which have particularly well-established links to diet. If you read the word diabetes and think peripheral neuropathy or the words cardiovascular disease and think stroke, you realize, of course, that the authors are talking about neurological issues as well.
“I see physicians all the time walking around with sodas, snack packs, and quick processed foods from all the demands of the profession,” says Baute. But she sees a change in the new generation coming up. “The students now are noticing that there is a disconnect between physicians, patients, and nutritional habits.”
According to Devries et. al, in the recent JAMA article, an average of just 19 hours is currently devoted to nutrition during the four years of medical school. Further deficits in training span the three or more years of graduate medical education. One reason nutrition education deserves special attention now, say the authors, is because of “increasing attention on the wellness and self-care of residents and fellows.” Not to mention, the high rates of burnout among physicians themselves.
The more students demand change, the more likely it will happen, however slowly. In service of speeding up that process, Devries et, al. suggest that nutrition education be integrated into existing curricula. For example, “a lecture on the clinical management of hypertension could include detailed information about the Dietary Approaches to Stop Hypertension (DASH) study.”
In the meantime, what about all those physicians well past their educational years? It’s definitely not too late.
It wasn’t until Baute had completed her training and entered practice that she realized she needed more nutrition education and then did a fellowship at the University of Arizona Center for Integrative Medicine in Tucson. “I was blown away in our nutrition classes that it was all new to me, and for many of the other 100 classmates of mine who were also physicians.”
Baute realizes a fellowship like this isn’t an option for everyone but says nutrition education is still highly accessible, especially in this digital age. Baute, who presented on the science of nutrition and neurology at last year’s annual meeting of the American Academy of Neurology (AAN), recommends checking out their section on Neurohealth & Integrative Neurology. The AAN meeting is coming up again soon and already looks to have several talks on nutrition scheduled.
Even easier, Baute recommends starting at your local farmers market. “Just try one fruit or vegetable that is in season per week, and see which one you actually like.That is making a huge step toward improving your own nutrition.” Tell your patients you just tried a rutabaga and you liked it. Then, when you give them nutrition advice, they’ll know you are not asking them to do anything you wouldn’t do.
“Physician visits are ideal opportunities to reinforce the message that attention to nutrition and lifestyle are critically necessary for optimal health…,“ say Devries et, al. in their JAMA article.
Besides, as payment for medical services becomes increasingly value-based, “An emphasis on nutrition is not only good medicine, but is also becoming sound economics.”
If you do end up attending the annual meeting of the American Academy of Neurology, come by and see us at the Ambu booth in the Exhibit Hall. We’ll be offering quick tutorials on how to make the most of our free unbranded patient newsletters.
We are just about a month away from the annual meeting of the American Academy of Neurology, held this year, May 4–10, in Philadelphia. Most people are firming up their plans to attend by now (Neurology Insights team included), but you may still be on the fence. You’ve probably already weighed the value of all the new science and networking opportunities the meeting offers. But you may not have thought about how much you might gain from the personal stories you’ll chance to hear if you attend. Why are these stories important?
Because practicing neurology today can be really hard.
“You are dealing with life and death and an ever-changing body of knowledge,” said neurologist Heidi Schwarz in our post The Financial Cost of Burnout. “That’s been the same for years and years. What’s been added is the frustration of another layer of bureaucracy and documentation that distracts us from what led us to medicine in the first place.”
Finding out how someone else has faced and solved any one of these increasingly complex issues can be reassuring and even life-changing. New perspectives given via personal stories may come from old friends or complete strangers at the AAN meeting. In our experience some of the most inspiring stories come from speakers, whether shared during talks or in conversation after.
Like the stories about volunteering in Haiti after the 2010 earthquake, shared by neurologists Anthony Alessi and Elaine Jones at the 2017 meeting. They highlighted the value neurologists can bring to poor and underserved countries like Haiti. They also talked about how much they received from their experiences. Alessi described the experience as life-changing, and both he and Jones have continued their volunteer work since.
Also at the 2017 meeting, neurologist Donn Dexter shared how he combats burnout through advocacy. Before 2012, Dexter says he was like a lot of neurologists experiencing “emotional exhaustion, cynicism, depersonalisation, loss of empathy and career dissatisfaction.” Then, he spent a weekend taking part in the Palatucci Advocacy Leadership Forum (P.A.L.F.). The training inspired Dexter to get involved in advocacy at the national level, which he says helped him get his spark back.
Also at last year’s meeting, neurologist Kim Hutchison shared how an innovative new daily exercise she calls Joy Rounds helped her and her colleagues bring much-needed levity and humanity back into their work environment. Hutchison says she was thinking about the negative correlation between burnout and resilience when she developed the exercise. Even if you just use it as an icebreaker, the exercise can increase connectedness among team members during a single meeting.
These personal stories are just the tip of the iceberg; we have many more under the category Neurologist Highlight here on our blog. If you do decide to jump off the fence and attend the 2019 annual AAN meeting, come by the Ambu booth in the Exhibit Hall and share your story with us.
At the booth we’ll also be offering quick, 5-minute tutorials on how to utilize our free patient education newsletter. This unbranded newsletter focuses on a different topic each month, and provides your patients with helpful information in short, easy-to-read articles along with a patient education video.
When Shawn Jorgensen, MD, and his brother joined their small private PM & R practice in upstate New York, they had no established referral base for electrodiagnostic (EDX) testing. So they got to work and developed specific strategies that have led to their success in building their EDX practice. They did this by aligning their electrodiagnostic practice with the needs of patients and referring providers. Key elements of this include staff buy in, prioritizing availability, and optimizing communication. READ MORE >
“It was just getting so complicated and so stressful, constantly having to see more patients and worry about all the regulations,” says neurologist Elaine C. Jones, MD, of running her small private neurology practice. Then she began working in telemedicine, which allowed her to cut back on her practice hours without losing money. Today she does telemedicine full-time from a home office in Rhode Island and ports of call like Thailand, Japan, and Haiti. “This is a fabulous supplement to a practice,” says Jones. “It’s fun, and I do enjoy it.” READ MORE >
Here on Neurology Insights, we have written a lot about content marketing because it can be such a good fit for physicians who want to grow their practice. Unlike traditional advertising, this form of marketing is focused on the needs and wants of the customer. For patients, this is the provision of good health information, something you are an expert at anyway. You can provide this value outside your clinic via informational pamphlets, community lectures, Facebook Live events, blog articles, and social media engagement. READ MORE >
Continuing with our theme of content marketing this season, we wanted to remind you again about the free, unbranded newsletter we have created just for you and your patients. In this post, we go into detail about the benefits of using a patient-focused monthly newsletter. Each month, the patient newsletter focuses on a different neurological topic (diabetic neuropathy, meningitis, etc.) and includes an engaging informational cartoon video on the subject. The newsletter is full of useful information, relevant health news, and a delicious recipe to boot. READ MORE >
Wondering what to blog about, tweet, or otherwise share with your community (via content marketing) this month? Ask Chipotle. March is Essential Tremor Awareness Month, and the food chain has gotten on board, helping to raise awareness. As an expert in neurological disease, you are in an even stronger position to help shine that light. Even if you don’t take part in this campaign, it is still worth learning how to use the resources that go along with medical awareness months. Then, when the next one comes along you’ll be read to help spread the word, raising awareness for a good cause and showing that you are the go-to expert in your community. READ MORE >
Identifying differences in types of dementia can help narrow down appropriate treatment pathways. It can also avoid confusion about how to approach the different causes of similar diseases. But, as researchers out of Northwestern University’s Feinberg School of Medicine were recently reminded, commonalities can lead to important breakthroughs in care and treatment, too.
Their study, published in the March 6 online issue of Neurology, examined similarities in patients with Primary Progressive Aphasia (PPA) and Alzheimer’s disease (AD)—specifically neuronal damage.
In patients with PPA, damage occurs in the areas of the brain responsible for language first, so their ability to communicate, and then understand, progressively declines. This is somewhat different from patients with AD, where the areas of the brain responsible for memory show damage first. This difference would suggest dissimilar pathological processes and explain the lack of treatment options for PPA relative to Alzheimer’s disease (which are slim enough).
However, the study showed that a similar loss of cholinergic neurons and axons in the forebrain occurs in both PPA and AD. Current treatment for AD includes cholinesterase inhibitors, which prevent the breakdown of acetylcholine, affecting its impact on cholinergic neurons. Since the study demonstrated deterioration of the same neurons in PPA, the new discovery suggests that the same drugs that are effective in AD could be beneficial in PPA patients.
Researchers suggest that the results of the study should trigger further research into using cholinesterase inhibitors to treat PPA.
Of note, this study focused on a specific type of PPA that shows the formation of plaques and tangles in brain tissue, as found in AD. Of those with this type of PPA, 80 percent had moderate to severe deterioration of basal forebrain cholinergic neurons, where only ten percent and zero percent of the other two types of PPA showed basal forebrain cholinergic neuron deterioration. Those types would not expected to respond to cholinesterase inhibitors.
The authors conclude, “The demonstration of cholinergic denervation with an anatomy that fits the clinical picture suggests that cholinergic treatment is justified in patients with PPA who have positive AD biomarkers.”
Clearly strides are needed for treatment of all kinds of dementia. But because of the prevalence of AD, we have a larger pool of individuals to draw conclusions from. It is an unusual circumstance to discover that pathology similar to Alzheimer’s disease could be a good thing, but in this case for those with PPA, it could end up being the key to effective treatment.
Living with the effects of Bell’s palsy is a frustrating experience. This frustration is compounded by the fact that most treatments don’t work well and patients can’t be sure when the symptoms will subside. These facts make it frustrating for the physicians who care for patients with Bell’s palsy, too.
But what if we had a better understanding of the course of the disease—a map of the typical pathways to resolution? Could this map be used to predict disease course and response to treatment? If so, we perhaps could relieve some of the stress for affected patients by outlining a probable timeline of symptoms, and we could tailor treatment based on likely response.
This may sound like a stretch right now, but one lab is working on just such a map. The Facial Animation Lab is led by Carroll Ann Trotman, Professor and Chair of Orthodontics at Tufts School of Dental Medicine. Initial research in the lab focused on mapping for cleft lip and cleft palate surgery with the hope of providing “surgeons with a tool to more accurately assess the extent of impairment and degree of disfigurement, and ultimately tailor revision surgeries to a patient’s individual needs.”
Now the lab has turned its 3-D cameras toward 34 patients with facial paralysis, specifically Bell’s palsy. The patients are fitted with a grid of reflective markers and then directed through a series of facial movements which are recorded by the cameras. This is repeated multiple times over 12 weeks and then the 3-D images are animated, providing a window into the recovery of individual patients and an opportunity to analyze similarities and differences among patients.
Restoring the Power of the Face - Vimeo
Trotman has also designed the study, funded by the National Institute of Dental and Craniofacial Research, to assess the ways patients cope with the emotional impact of facial paralysis throughout their recovery. Her hope is that physicians armed with the study results will be more equipped to care for patients with all aspects of facial paralysis, from the physical symptoms to the psychological effects.
It’s easy to imagine the potential of this type of information. As this study is completed and used to develop further research protocols, can specific pathways of recovery be identified? Do certain characteristics make a patient more likely to respond well to certain treatment types? Can these methods be used to learn more about other disorders such as focal dystonias?
Time will tell. But at the very least this research can arm patients and their physicians with more specific information about the course of the disease and its recovery. Even if it doesn’t lead to improvements in treatment, it may help reduce the frustration of not understanding what is happening for the patient. That in itself is good medicine.