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News and Opinions about MS, Health & Disability

Healthy eating can improve MS symptoms, but societies won’t endorse any one diet

Multiple sclerosis organisations around the world back the idea that eating a healthy diet can help people with the disease. But they are refusing, correctly in my view, to get behind any one diet.

dietA new study, published in Neurology, says that eating a healthy diet may be linked with reduced disability and fewer MS symptoms. Such a diet would include fruits, vegetables, and whole grains.

I have never attributed any importance to people saying that diet cured them of MS. In fact, it’s nothing short of hogwash. But that’s not to say that diet cannot help, just that it is not a cure by itself.

There are a number of dietary plans for which claims are sometimes made, and about which strong views are held. These include the Swank and Overcoming MS diets. Supporters of Swank, for example, believe it can reduce the frequency of flare-ups and lessen the severity of symptoms.

However, the US’s National MS Society and the UK’s MS Society say there is not enough evidence to recommend any one diet.

The authors of the new study, led by Kathryn C. Fitzgerald, acknowledges that there is a lack of evidence on the potential influence that diet may have on MS symptoms.

Fitzgerald works in the Department of Neurology, Johns Hopkins School of Medicine in Baltimore, Maryland, USA. She says: “People with MS often ask if there is anything they can do to delay or avoid disability. Many people want to know if their diet can play a role, but there have been few studies investigating this.”

Severe disability 20% less likely

To examine the role that diet may play in MS, Fitzgerald’s team looked at questionnaires completed by 6,989 people with MS as part of the North American Research Committee registry.

The team found that people in the group with the most healthy diet were 20% less likely to have more severe physical disability than people in the group with the least healthy diet.

Fitzgerald adds: “While this study does not determine whether a healthy lifestyle reduces MS symptoms or whether having severe symptoms makes it harder for people to engage in a healthy lifestyle, it provides evidence for the link between the two.”

The authors acknowledged that the study has two limitations:

·         First, participants were mostly older white people who had been diagnosed with MS for an average of 20 years. So, although people with all types of MS were included, the findings might not apply to everyone with the disease.

·         Second, the study’s design does not provide an insight into whether healthy diets might influence MS symptoms in the future.

What can a diet do for someone with MS? In my opinion, about the same as it can do for someone without the disease; a balanced diet helps to achieve and maintain a healthy level of fitness. But it is not a cure and never can be; don’t let anyone tell you otherwise.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Note: Health-related information available on 50shadesofsun website is intended for your general knowledge only and is not a substitute for medical advice or treatment for specific medical conditions. I am not a doctor and cannot and do not give you medical advice. You should seek prompt medical care for any specific health issues and consult a doctor before starting a new diet or exercise programme. Any opinions expressed are purely my own unless otherwise stated.

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Nearly 1 million Americans have MS, not 400,000 as previously thought – NMSS Study

A new National MS Society (NMSS) prevalence study estimates that nearly 1 million people have multiple sclerosis in the USA. And that’s more than twice as many as previously thought.

The new estimate is that 947,000 people have MS, compared with the long-accepted figure of 400,000.

Study results were published as “The Prevalence of Multiple Sclerosis in the United States: A Population-Based Healthcare Database Approach”. The poster was unveiled at the recent Joint ECTRIMS-ACTRIMS Meeting in Paris.

The findings are currently tentative, pending completion of a peer review and the prevalence study’s publication in a scientific journal. This could happen as early as next year.

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Dr Nicholas LaRocca.

NMSS vice president of healthcare delivery and policy research, Dr Nicholas G LaRocca. has headed the MS Prevalence Initiative since its launch in 2014.

Speaking with Multiple Sclerosis News Today (MSNT), LaRocca said the findings were “definitely not what we expected.”

He told MSNT that the dramatic jump seen in the prevalence study has more to do with methodology than an actual rise in the number of MS cases — though he doesn’t discount that possibility.

“In the past, prevalence was looked at as the number of people diagnosed with a given disorder at a particular point in time. But people with a given condition don’t necessarily have the sort of contact with the healthcare system that would appear to generate a valid diagnostic report.

Prevalence study needs to look at several years

“In order to get an accurate estimate, you can’t look at one point in time or even a year or two, but several years. That really opened up the possibility that the numbers would be much greater than we anticipated,” LaRocca said.

The new NMSS prevalence study involved a working group of up to 20 epidemiologists, statisticians and neurologists meeting virtually every week. It cost $1 million.

It drew on data culled from five national databases. These were Optum, Truven Health Market Scan, Department of Veterans Affairs, Medicare and Medicaid. There was also one regional database, Kaiser Permanente of Southern California.

Together, these databases provided information on more than 100 million people — a third of the US population. Researchers reasoned that nearly all persons with MS, except the uninsured, would be captured in one of these programmes.

However, it does exclude children, Native Americans, undocumented residents, and prisoners. It also misses people who seek treatment at alternative medical clinics rather than through the healthcare insurance system.

The study showed an overall MS prevalence of a staggering 402.8 cases per 100,000 inhabitants. This is a significant increase from 58 per 100,000 in 1976, and 85 per 100,000 for the years 1989-94.

“When you’re talking about the unmet needs of a given population, if you don’t know how large that population is, it’s hard to effectively advocate for them,” La Rocca said. “It’s also important from a scientific perspective.”

Interviewed by MSNT, LaRocca pointed out that four decades have gone by since the last “really solid study” of MS prevalence in the US.

“The last time there was a really solid study of MS prevalence in the United States was 1976. Over time, that estimate was updated, adjusted and corrected, so that after a while it started to fray,” he said.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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Registry set up to compare approved MS therapies

I think it’s great that therapies approved as treatments for multiple sclerosis are to be compared for safety and effectiveness. The move is long overdue.

Corrona Multiple Sclerosis Registry, which is to carry out the work, has been set up as a result to an important collaboration. A meeting of minds of the US’s National Multiple Sclerosis Society (NMSS) and Corrona led to the launch of the new registry.

effectivenessThe Corrona company is based in Cambridge, Massachusetts, and conducts observational cohort studies. These offer analytic expertise for clinical data, patient-reported measures and others to compare effectiveness, post-market safety reporting and commercial applications.

USA’s Food and Drug Administration (FDA) approved the first MS disease modifying therapy (DMT) in 1993. Today there are many more.

The registry will collect and analyze outcomes associated with several MS therapies. It has already enrolled its first patient, but plans to recruit 5,000 people with MS.

Effectiveness and safety: Data collection lags behind

Founding president of the Medical Partnerships 4 MS, Daniel Kantor, said in a press release: “MS research in the US lags behind other fields in collecting reliable real-world data to compare the safety and effectiveness of these therapies.”

Corronna says the registry will collect data from patients and their treating neurologists through questionnaires. It will include physician assessments and patient-reported outcomes.

Executive vice president of research at NMSS, Bruce Bebo, said: “Identifying the optimal treatment strategy is critical for people with MS and their healthcare providers. The collaboration with Corrona on the MS registry addresses this challenge. It furthers our goal of ensuring that people with MS have information, tools and resources to live their best lives.”

“Corrona is honored to partner with the National MS Society and US neurologists to create a national MS registry that can help guide treatment decisions for patients based on real-word comparative effectiveness and safety analyses,” said Jeff Greenberg, Corrona’s chief scientific officer.

For more information about the Corrona MS Registry, including enrolment details, you can contact ms@corrona.org or call (508) 408-5398.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a freelance medical writer and editor for various health information sites. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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A view from the ground: Understand and cut risks of falls

I fall, you probably fall. In fact, anyone with mobility issues that include problems with balance is more than likely to fall from time to time.

fallsAnd that’s how I came to find myself sitting on the ground beside my car. My knee gave way as I was trying to transfer to the car from my wheelchair.

This happened just two days ago, after Lisa and I left a restaurant to head home. I tried and failed to get up, both by myself and with help. Then a police car pulled up and the two officers helped me to my feet.

That’s when things became a bit confused. First were communication problems as my basic Spanish language skills matched with one officer’s basic English abilities.

Anyway, after I established that alcohol was not involved, I explained that I had “esclerosis multiple” (pronounced ‘mool-ti-play’). So far, so good – but it became evident that police training does not go as far as MS. Despite my protestations, they wanted to ship me off to hospital and, so, called an ambulance.

At least the ambulance team understood MS, and quickly realized I did not wish to go to hospital. They explained the situation to the police, and said that I was ok to drive. Then we were on our way.

Overall, I felt that the whole experience may have been frustrating but I cannot fault the care from either the police or ambulance crew.

Give falls more thought

All that got me to think about last Friday (September 22) being Falls Prevention Awareness Day in the US. This is designed to encourage people with multiple sclerosis and others who are likely to fall to give more thought to why we fall.

Although the awareness day is coordinated by the National Council on Aging, the National Multiple Sclerosis Society (NMSS) this year presented research into MS-related falls, as well as resources to identify risk factors of falling.

This included the fact that typical MS symptoms, such as poor gait and balance, or the loss of perception of where body parts are, all contribute to your falls. These often happen at home, while you do everyday activities.

According to the NMSS, neurological symptoms are not the only factors as psychological issues are another risk area.  Further, fear of falling, overconfidence, or inactivity can also be factors.

“As MS changes over time and walking becomes more difficult, you may find that you resist accepting help,” the NMSS writes in its guide for minimizing the risk of falls.

It says: “Being able to walk confidently and independently is important, so the idea of losing that independence may be frightening. Tools and tips that can prevent future falls will help to keep you more independent rather than take your independence away… being receptive to them is half the battle.”

Another plus is that the NMSS has also developed the Free From Falls program. This contains eight modules with webinars, downloadable educational material and video-guided exercises.

These materials teach people like you and me about the various risk factors, and also offers tips and strategies to reduce the risk of falls.

I, for one, will be paying close attention.

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Affiliate disclaimer: This affiliate disclosure details the affiliate relationships of MS, Health & Disability at 50shadesofsun.com with other companies and products. Read more.

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50shadesofsun.com is the personal website of Ian Franks, a Clinical Writer with Healthline, the fastest growing health information site. He enjoyed a successful career as a journalist, from reporter to editor in the print media. He gained a Journalist of the Year award in his native UK. Ian received a diagnosis of MS in 2002 and now lives in the south of Spain. He uses a wheelchair and advocates on mobility and accessibility issues.

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MS medications: Improve access

A call is being made for a change to improve access to medications to treat multiple sclerosis.

American National MS Society president and CEO Cyndi Zagieboylo said: “It is time for change. People with chronic illnesses need to have confidence that they’ll be able to get the life-changing medication they need.”

The Society’s latest initiative aims to make the availability of MS medications affordable, simple and transparent and spotlights Abigail Bostwick, 36, who was diagnosed with multiple sclerosis in 2013.

She says she never thought it would hit her as hard as it has — not physically — but financially but added: “Our savings quickly drained. We’ve sold a lot of our things. We live paycheck to paycheck.”

accessLike many people living with MS, Bostwick has struggled to afford her MS medications and navigate the complicated system of prescription medication insurance coverage, says the society.

In a report on its website, it continues:

People with MS report high and rapidly escalating medication prices, increasing out-of-pocket costs, confusing and inconsistent formularies (lists of medications covered by an insurance plan), and complex approval processes that stand in the way of getting the treatments they need.  These challenges can cause delays in starting a medication or changing medications when a treatment is no longer working.

Delays may result in new MS activity (risking disease progression without recovery) and cause even more stress and anxiety about the future for people already living with the complex challenges and unpredictability of MS.

In 2004, the average annual cost for MS medications was $16,000; today it is $78,000 — that’s an increase of nearly 400 percent!

The society’s “Make MS Medications Accessible” initiative is calling on leadership from everyone involved — pharmaceutical companies, insurance providers, pharmacy benefit managers, specialty pharmacies, healthcare providers, policy makers, people with MS and others — to work together to focus on getting people with MS the medications they need to live their best lives.

“Medications can only change lives if people can access them. Medications — and the process for getting them — must be affordable, simple and transparent. No single stakeholder has all the solutions; we can only find the solutions together,” said Zagieboylo.

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ian profile50shadesofsun.com is the personal website of Ian Franks, who is Managing Editor (columns division) of BioNews Services. BioNews is owner of 50 disease-specific news and information websites – including MS News Today. Ian has enjoyed a successful career as a journalist, from reporter to editor, in the print media. During that career he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.

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Help for Anyone Newly Diagnosed with MS

Being diagnosed with MS can be more than a bit of a shock at first. Yes, you finally know what you’ve got, what all those symptoms you’ve having mean, and you have heard what your neurologist told you.

Well, you may have heard, but you didn’t take it in because you weren’t actually listening. The doctor was droning on while you were lost in your own thoughts, your own despair.

helpMultiple what? Sker … what?

You leave the consulting room not knowing much at all, but grasping an information sheet to read at home.

So, once you get the name of the disease sorted out, where can you find more information? Fortunately, most countries have MS charities, or nonprofits, that publish a host of leaflets and pamphlets that can help. As an example, I looked at what is on offer to the newly diagnosed in the U.S.and U.K.

Each country has the luxury of two charities.

Newly Diagnosed with MS in the US

The National Multiple Sclerosis Society (NMSS) offers:

  • Knowledge Is Power (KIP): An educational series for people newly diagnosed with MS or those with a loved one recently diagnosed.

The Multiple Sclerosis Association of America (MSAA) also provides a “Multiple Sclerosis information” (MSi) collection, offering online educational videos, webcasts and webinars. These are easy to access through the MSAA’s website by selecting the topics of interest to you. For individuals who are newly diagnosed, or who are experiencing initial symptoms and have yet to be diagnosed, a portion of these MSi videos and webinars may be particularly helpful. These include:

Newly diagnosed with MS in the UK

On the other side of the Atlantic, the MS Society (MSS) has published the booklet, “Just Diagnosed – an Introduction to MS,” available in English and a number of other languages.

The information is for anyone who either has just been, or is in the process of being, diagnosed with MS.

The MSS website says: “You also could be the partner, relative or friend of someone who’s received this diagnosis. You may be experiencing a huge range of emotions, among them anger, shock, fear or even relief (especially if it has taken some time to be diagnosed).

“It’s likely that you also have hundreds of questions, many of which you don’t know who — or how — to ask. While we can’t promise that we can provide all the answers here, this booklet aims to give you an introduction to MS and to provide the means for you to seek the information and support you need.”

The booklet is also available in audio format.

Alongside the society, the MS Trust (MST) says it can provide as much information as is needed, either at diagnosis or later. It says: “You may feel emotional and probably have lots of questions. The MS Trust can help you.”

The MST also has other information if you’re concerned that your symptoms might be MS, or have been diagnosed with clinically isolated syndrome (CIS).

Here is a list of available information from the MST:

So, if you are newly diagnosed with multiple sclerosis, or are caring for someone who is, remember you are not alone. Fear of  the unknown can be terrible, but there is plenty of information prepared especially for you.

This article, written by me, first appeared on Multiple Sclerosis News Today.

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Ian Franks
Ian Franks is our Chief Columnist and Patient Specialist at Multiple Sclerosis News Today. He has enjoyed a successful career as a journalist, from reporter to editor, in the print media; during which he gained a Journalist of the Year award in his native UK. He was diagnosed with MS in 2002 but continued working until mobility problems forced him to retire early in late 2006. He now lives in the south of Spain and uses his skills to write his own flourishing specialist MS, Health & Disability blog at www.50shadesofsun.com. Besides MS, Ian is also able to write about both epilepsy and cardiovascular matters from a patient’s perspective and is a keen advocate on mobility and accessibility issues.
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