Category Archives: Research

At-home treatment studied for MS “brain fog”

(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)

One of the most troubling symptoms of multiple sclerosis, especially for those of us who are still working, is “brain fog”…not being able to concentrate… not feeling “sharp” when working on a task or solving problems.

So it was interesting to read about a new study that reports that patients with MS had better problem-solving ability and response time after training with a technology called transcranial direct current stimulation, or tDCS. 

During tDCS, a patient wears a headset through which a low amplitude direct current is applied to the scalp. The stimulation makes it easier for neurons in the brain to fire. The result, say the researchers, is an improvement in the learning that takes place when patients use cognitive training games during rehabilitation. And, importantly, this technology doesn’t have to be applied in a clinic; it can be used by a patient at home.

“Our research adds evidence that tDCS, while done remotely under a supervised treatment protocol, may provide an exciting new treatment option for patients with multiple sclerosis who cannot get relief for some of their cognitive symptoms,” lead researcher Leigh E. Charvet, PhD, associate professor of neurology and director of research at NYU Langone’s Multiple Sclerosis Comprehensive Care Center, says in a release on this research. “Many MS medications are aimed at preventing disease flares but those drugs do not help with daily symptom management, especially cognitive problems. We hope tDCS will fill this crucial gap and help improve quality of life for people with MS.” 

In this study, published in the Feb. 22 issue of Neuromodulation: Technology at the Neural Interface, the tDCS was targeted at the brain’s dorsolateral pre-frontal cortex. That’s an area linked to fatigue, depression and cognitive function. Twenty-five participants were provided with a tDCS headset that they learned to apply with guided help from the research team.

In each session, a study technician would contact each participant through online video conferencing, giving him or her a code to enter into a keypad to start the tDCS session. That allowed the tech to control the dosing. Then, during the stimulation, the participant played a research version of computerized cognitive training games that challenged areas of information processing, attention and memory systems.

Researchers found participants in the group treated with tDCS showed significantly greater improvements on sensitive, computer-based measures of complex attention and increases in their response times compared to the group that did cognitive training games alone.

The NYU team is currently recruiting for additional clinical trials involving 20 tDCS sessions and a randomized sham-controlled protocol, to gather additional evidence of benefits of tDCS. If you are interested in participating in one of the studies, call 646-501-7511 or email nyumsresearch@nyumc.org.

Caution: There are tDCS-type products that are being sold directly to patients, without being supported by researchers or information about how to use them. The researchers suggest you stay away from these. If you’re considering tDCS, they say, first speak with your doctor.

 

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Have a say in what MS researchers research

Our friends at iConquorMS have a couple of new, quick on-line surveys available for MS patients to answer.  I’ll tell you about them in bit but first let me tell you about iConquorMS. (I first wrote about this groups a few weeks ago the column I write for http://www.multiplesclerosisnewstoday.com).

Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background?

Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years from MS patients who’ve volunteered to fill-out online surveys. Though the group of patients is small, so far, their data is fascinating. For example, you can go to the iConquerMS.org website and register to see graphs outlining the ages, employment status and other demographic information about the unidentified volunteers. Or, you can see how they’ve answered questions about their social activities, sleep disturbances, mobility issues, and so on.

Patients get a say in the research

The goal of the project is to give people living with MS the ability to play an active role in research about the disease. This is done by giving them a way to securely provide health data for researchers to compare, to propose research topics that are important to the patients themselves and to become informed about the research process and specific studies. “Our ambitious agenda is nothing less than establishing a new model for research in multiple sclerosis,” says Robert McBurney, PhD, president and CEO of the Accelerated Cure Project for MS.

Using patients’ information to improve life with MS

Last August, iConquerMS launched its signature research project: REAL MS (Research Engagement About Life With MS). It’s a long-term study that will use the answers submitted via the online surveys to address things that impact the daily lives of MS patients. For example, information about which drugs and supplements work best for which people, which symptoms have the biggest impact on quality of life, or what people with MS can expect from making lifestyle changes.

REAL MS is modeled on the Framingham Heart Study, a community-based research study that has had a profound impact on the understanding of the causes of heart disease and how to treat and prevent it.

The project is supported by many top MS organizations, including the National Multiple Sclerosis Society, the Multiple Sclerosis Association of America, the Multiple Sclerosis Foundation, and Can Do MS.  “Understanding the MS experience from the patient’s perspective is vital to improving the care of people with MS and to creating effective treatment paradigms,” according to the National MS Society’s Timothy Coetzee, PhD, on the project’s website.

A few more volunteers would be nice

When the iConquerMS project began in early 2015 it was hoped that 20,000 MS patients would be recruited to contribute their health data and research ideas. Unfortunately, at the end of 2016 only about 3,100 volunteers have signed-up to participate in the database. I’m one of them.

The latest surveys

We are back today with two new requests from scientists collaborating with iConquerMS.  One research team is looking for input from people with progressive forms of MS and the other is seeking input from people who have been or are currently on Tysabri.  We want to make sure the design of these studies reflects the preferences and priorities of people with MS and are turning to you for input.

If you are diagnosed with a progressive form of MS:

Researchers at Stanford University, including a scientist who is also a member of iConquerMS, are writing a funding proposal for a study that could lead to less fatigue, pain and depression among people with MS.  Your answers to a few questions will help in the design of the study and the writing of the proposal.

If you are interested in assisting and you have a progressive form of MS, please go here and fill out the short survey.

If you have in the past or are currently taking natalizumab (Tysabri):

A team of neurologists from NYU is writing a funding proposal to study dosing patterns of Tysabri.  They have asked the iConquerMS community to assist by answering a short survey, which should take no more than 5 minutes to complete. The information you provide will help them better understand the current knowledge and practices of people who have been or are currently on Tysabri.

If you are interested in assisting and you have in the past or are currently taking Tysabri, please go here and fill out the short survey.

If you have any questions on either survey, contact us at info@iConquerMS.org.

 

Fatigue

Are You Ready for Bed at Noon?

(This post first appeared as my column on http://www.multiplesclerosisnewstoday.com)

I thought that I’d finish writing this last night, but I was too tired.

Same thing the night before…and I’m sure this sounds familiar to a lot of you. The National Multiple Sclerosis Society estimates that about 80 percent of the people who have MS have fatigue as one of their symptoms. (Only 80 percent?  The other 20 percent must be faking alertness).

I use the drug Provigil (Modafinil) to improve my alertness. I like to swim in the summer and do some strength exercises in the winter.  And that helps. But is there something we’re overlooking?  Something like another illness on top of our MS.

Is it a Sleep Disorder?

A 2014 study in the Journal of Clinical Sleep Medicine indicates we may be closing our eyes (sorry, I couldn’t resist that) to the fact that actual sleep disorders, such as narcolepsy or sleep apnia, are disrupting our sleep and causing some, or most, of the fatigue that we attribute to MS.

Researchers at the University of California, Davis and Boston University studied a group of MS patients who said they had excessive daytime sleepiness (based on the Epworth Sleepiness Scale) or an abnormal level of fatigue (based on the Fatigue Severity Scale).  Of that group, 38 percent screened positive for obstructive sleep apnea, 32 percent for moderate to severe insomnia and 37 for restless legs syndrome. Yet, only between 4 and 12 percent of that group reported that they had been diagnosed for those illnesses.

This seems to be more evidence that something known as “diagnostic neglect,” which I wrote about several weeks ago, is going on.  Many of our doctors seem to have tunnel-vision when it comes to the possibility that a problem other than MS may be causing one of our MS symptoms.  Even my neurologist, who I love, has never suggested that I be tested for an illness such as sleep apnea.  I’m up twice, sometimes three times, a night and we’ve always attributed that to bladder problems.  Maybe it’s something else.  I plan on asking her about this on my next visit.  If you’re tired much of the time, maybe you should have the same conversation with your doc.

Before You See the Doc…

Before you have that chat, there’s a good overview about MS and sleep problems on the web site of the National Multiple Sclerosis Society.  Taking the time to give it a read will give you a good foundation for that talk.

 

 

 

Getting Older With MS – Some Tips from MS “Seniors”

(This was first published in my column on http://www.multiplesclerosisnewstoday.com)

I hate to admit it, but I’m getting kind of old.

That’s not to say that 68 is really old, but I’m probably older than a lot of the people who are reading this.  I’m also 36 years old in “MS years.”  I was diagnosed the month that Ronald Reagan won the Republican nomination to run for U.S. President and I’ve had MS nearly half of my life.  In other words, my MS and I have traveled down lots of roads together.  Can you learn anything from the way that MS senior citizens have handled our disease?

A recent study looked nearly 700 of us who are older than 55 and who’ve been living with MS for more than 20 years.  The goal of the researchers at Memorial University, St. John’s, Newfoundland was to uncover common factors that allow us to age well, even with our MS. It’s hoped that learning from those experiences can help young and middle aged people with MS plan to live better lives as they grow older.

Seven themes were identified in the research, which was published in the Multiple Sclerosis International journal last August:  social connections, attitude and outlook on life, lifestyle choices and habits, health care system, spirituality and religion, independence, and finances.  But the first three jumped out as being the most important.

Social Connections

Social connections was the most common factor that participants said contributed to their healthy aging.  This included relationships with family, neighbors and even pets; Activities outside the home that provided opportunities for social engagement were also highly valued and included support groups, volunteer work, and community organizations.

Said a 59 year old woman from Quebec, “my volunteer work with my dog and the hospital (patient advocacy) has kept me stimulated.”  And a 66 year old woman from Nova Scotia valued “people close to me who accept my MS and give me all the encouragement and support that I need, plus allow me to do the activities that I wish to do and at my level and speed.”

Attitude and Outlook

Attitude and outlook was the second in importance. Older people with MS reported adopting ways of thinking that helped them to cope with the challenges of living with MS. That meant doing simple things such as having a positive attitude and being optimistic.  Determination and perseverance was also important.

Michael, 64 years old from Ontario, reported: “Being determined has helped – I should have stopped work (teacher grade 1-3) five years before I did, perseverance.”

Participants also reported that they accepted their MS. They said they understood how to work within their limitations and to focus on their abilities. Humor and maintaining their self-identity were also important.  People frequently explained that “I am not my disease.”

Lifestyle Choices

This, basically, meant they took care of themselves.  Choices included eating healthy getting exercise and adequate rest, managing medications and using alternative therapies.

“I have a healthy diet and get lots of rest,” 57 year old Karen reported. “This year I am able to take Wednesdays as a sick day. This is extremely helpful. I can’t walk because I don’t have much strength in my legs. I get exercise on my exercise bike. I do 20 minutes a day. It really helps me feel better. I do not eat red meat.”

It also meant doing things like having a hobby, working, being outdoors and traveling.  Very interesting to someone like me, who writes about MS, is that this included searching for resources and information about MS as an activity that contributed to their sense of purpose.

 

 

 

 

Can you measure how tired I am?

[This post first appeared last month in my column on www.multiplesclerosisnewstoday.com]

Feeling tired? No surprise there. Fatigue is as much a part of living with Multiple Sclerosis as sand is a part of the beach where I live.

It’s interesting, then, that neurologists seem to have no good system for measuring levels of MS fatigue or any treatments that are really effective over the long term.

Physiologists at Colorado State University are raising those issues in a paper titled “Fatigue in Multiple Sclerosis: Misconceptions and Future Research Directions,” published in the Aug. 2 issue of Frontiers in Neurology. In it, they assert that “fatigue remains poorly understood and [because of that people with MS] continue to suffer from a lack of effective fatigue treatments.”

The paper points to research by B.M. Kluger and others, and puts it this way: “Current treatments are nonspecifically targeted to a vaguely defined symptom with unsatisfactory outcomes.” In addition, says Kugler, MS studies often fail to understand the difference between fatigue, depression and lack of sleep. I translate those statements to say: They’re shooting in the dark.

Defining MS fatigue

The Colorado State physiologists hope to find a way to shine a light on that target. They begin by offering this definition of fatigue: “The decrease in physical and/or mental performance that results from changes in central, psychological, and/or peripheral factors.” They define “central” factors as things related to the central nervous system. “Psychological” factors include mood disorders, motivation, performance feedback, and arousal. “Peripheral” factors are physical changes.

All of these depend upon what the authors call “conditional dependencies”: what the person with MS is doing, the conditions (e.g., heat and cold) where the person is, and the physical and mental condition of that person. These all interact with each other, as well as with the “factors” listed in my previous paragraph.

Assessing MS fatigue

Since MS fatigue isn’t a one-size-fits-all problem, the physiologists suggest that doctors measure it using multiple tests. These include electromyography, metabolic measurements, transcranial magnetic stimulation, magnetic resonance imaging (MRI), and near infrared spectroscopy.

Then, overlay the test results against the standard definition of fatigue that the Colorado State physiologists have proposed. “By using a uniformed understanding and measurement of fatigue,” they write, “progress may finally be made in effectively treating the symptoms of fatigue and improving quality of life” for MS patients.

A patient’s view

Sounds pretty logical to me.

There’s no doubt that my fatigue is affected by a number of factors, just as the Colorado physiologists suggest: heat, lack of sleep, stress, occasional depression. If I told a doctor I felt warm I’d expect to have my temperature taken … or my blood pressure measured if I was stressed. But no one has ever measured my fatigue.

How, and how much, does my fatigue change from day to day, and how can it best be treated? A drug like Provigil can be prescribed to improve my alertness if my fatigue is due to lack of sleep, but what if it’s due to stress or depression … or a combination of them?

I think the Colorado State researchers have the right idea. Now, I’d like to hear the thoughts about this approach to handling MS fatigue from the neurologists and other medical professionals who may be reading this.

Volunteers wanted for MS diet study

People with MS often wonder if their MS is affected by what they eat.  Articles about the reported benefits of various diets appear regularly.

Now, researchers at the University of Iowa are going to study two of the most well know MS diets to see what impact they have on MS symptoms, specifically on the level of a patient’s MS-related fatigue.

Both MS Diets Eliminate Meat

The diets to be studied are the Wahls Elimination diet and the Swank diet. The Wahls Elimination diet excludes all grains, legumes (such as peas, beans, lentils and peanuts), dairy, eggs, and nightshade vegetables (such as eggplant, peppers, potatoes and tomatoes). Swank is a low saturated fat diet that eliminates red meat but includes whole grains and low fat dairy. Both diets include certain vegetables, fruits and dietary supplements.

Study investigators will be recruiting 100 people with relapsing-remitting MS who experience fatigue.  The clinical trial will last 36 weeks. Participants will follow their usual diet for 12 weeks and then be randomly assigned to follow a low saturated fat diet (Swank diet) or a modified Paleolithic diet (Wahls diet), for the next 24 weeks. Their health and activities will be extensively monitored during the study. The study requires 4 visits to the University of Iowa Hospitals and Clinics in Iowa City, Iowa. Reimbursement will be provided for some aspects of the study.

Individuals interested in being considered for enrollment in this study should complete screening questionnaires at: https://redcap.icts.uiowa.edu/redcap/surveys/ and use code:  JMJPYEJHP.  For questions, email: MSDietStudy@healthcare.uiowa.edu or call 319-384-5053.

Wahls and Swank

Terry Wahls, MD created the Wahls Protocol diet after being diagnosed with MS and progressing to the point where she began using a wheelchair. She’s spent more than a decade studying the origins of certain foods and vitamins and their effects on the body. Whals tells the University of Iowa web site that, after following her own diet, “In three months the fatigue was gone. In six months I was walking without a cane, and after nine months, I was biking around the block. A year after I started, I did a 20-mile bike ride.”

Roy Swank, MD, PhD, began studying MS in 1948 and created the low saturated fat Swank Diet around 1950 after he observed a higher incidence of MS in geographic areas that ate meat, milk, eggs, and cheese – foods that are high in saturated fat — and a lower incidence in areas that ate fish.  He spent more than 50 years recommending this diet to his patients and monitoring their health.

Both diets have been shown to have a positive impact on patients with multiple sclerosis.

The National Multiple Sclerosis Society in the U.S. has granted $1 million to Dr. Whals, at the University of Iowa, for this clinical study.

Biogen

MS drug maker getting new top guy

If you have Multiple Sclerosis the chances are good that you’ve used, or will use, a drug made by Biogen.  The biophamaceutical company makes Avonex, Tysabri, Tecfidera, Fampya, Plegridy and Zinbryta to treat MS.  I’ve used two of them myself and participated in the double-blind study for Avonex, way back when.

Now, Biogen’s Chief Executive Officer, George Scangos, has announced that he’s leaving.  What will that mean to those of us who depend upon companies, such as Biogen, to continue to produce new, and hopefully better, MS drugs?

It’s been a roller coaster ride for Biogen over the six years that Scangos has been at its helm.  Financially, the company had a strong second quarter this year.  But sales, overall, have slowed.  The Wall Street Journal reports that “sales of its biggest drug, Tecfidera, continued to cool in its latest quarter….Revenue from Avonex, Biogen’s No. 2 treatment, slipped from a year earlier.” Last month Opicinumab, an experimental MS drug for which Biogen had high hopes, failed to improve the health of patients in a midstage study.

The Boston Globe quotes biotech analyst Eric Schmidt as saying “George is leaving the company in good health, but this company, which wants to be a leader in treatments for neurodegenerative diseases, has a lot of wood to chop to strengthen the pipeline.”  Does this mean less focus on MS drugs and more on drugs to treat other neurodegenerative diseases, such as Alzheimer’s and spinal muscular atrophy?  Says Bloomberg biotech columnist Max Nisen: “Scangos deserves credit for building the world’s leading MS drug franchise. But his follow-through has been less exciting. Instead of spending $5 billion on something that might shift Biogen’s narrative of slowing growth and excessive risk, investors are getting a buyback. Scangos’s successor will need to be more creative.”

From the viewpoint of this MS patient, a patient who’s been helped by medicines that Biogen has developed, let’s hope that “more creative” doesn’t mean less attention to the needs of those of us with this lousy disease.