Mom's Story

A discussion about Mom's Story and MS…

Archive for the tag “brain, chronic diseases, exercise, MS, multiple sclerosis, National Multiple Sclerosis Society, Neurology, NMSS, physical activity”

Prevalence of MS More Than Doubles Estimate

A new study funded by the National MS Society has confirmed that nearly one million people are living with MS in the United States, more than twice the original estimate from a previous study. This breakthrough is a pivotal moment in the MS movement as a scientifically sound measure of prevalence helps us better understand the disease and its impact. With twice as many people living with MS, solutions for MS are now twice as important.

In addition to the main paper outlining these results, two companion papers providing background information on prevalence in the U.S. and reviewing the study methods were also published in the February 15, 2019, online issue of Neurology®, the medical journal of the American Academy of Neurology.

Q: What is prevalence and how is it different from incidence?
A: Prevalence is the number of people living with a disease. Incidence is the number of people newly diagnosed with a disease within a given period of time.

Q: How many people are living with MS in the U.S. according to the new prevalence estimate?
A: Nearly 1 million people (913,925)

Q: How is the new estimate different than numbers used before?
A: More than twice as many people are living with MS than was previously thought.

Q: Where did the earlier MS prevalence number of 400,000 come from?
A: The previous figure of 400,000 was an estimate calculated from population growth since the national study of MS prevalence that was published in 1981.

  1. How did the prevalence number jump from 400,000 to 913,925?
    A. As part of a Society-funded study, researchers developed a novel method for estimating the number of people who are living with MS using large medical claims datasets. This method has produced a higher, and likely more accurate, count.

Q: Why is this information important? And what does it mean for people affected by MS and the work of the National MS Society?
A: Having this scientifically sound prevalence estimate will facilitate a better understanding of the needs of people with MS and the economic burdens imposed by the disease on families and society. It will be a starting point for researchers to understand if MS is increasing, or if there are MS geographic clusters that hold clues to factors that trigger MS. These data will also help ensure that the National MS Society is able to connect to and support all people affected by MS.

Q: Does this mean more people are getting MS than before?
A. We don’t know. Since solid information on the number of people being diagnosed with MS has not been available, it has been difficult to tell whether more people are getting MS or if the total number is just a reflection of overall population growth, better diagnostic procedures, the availability of disease modifying drugs, or other changes in the MS landscape. Going forward, this should become easier. Outside of the U.S., some studies have reported increases in the incidence of MS. More work is needed to understand all the factors that led to this increase.

Q: What was the process to reach this new number and why has it taken so long to get an updated prevalence number of people living with MS in the U.S.?
A: After an examination of what it would take to identify a scientifically sound estimate, the Society funded the work and established a work group of experts across the fields of epidemiology, statistics and health care. This group labored for nearly four years to develop and implement a plan for estimating prevalence as rigorously as possible given the sources of information available. They obtained the proper mix of administrative datasets, developed and validated a formula to identify people with MS then applied it, and the findings were published in a peer-reviewed journal.

Q: Will this change the global number?
A: Yes, this will change the global number (which is most recently estimated at 2.3 million). The global number is calculated through input from MS societies across the globe to the MS International Federation. The MS International Federation is planning to do an update of the “MS Atlas” and when complete, the global number is likely to increase not just from the new U.S. estimate but from other nations as well.

Q: How confident are we in this number?
A: A team of experts led a thorough study based on a sound, scientific process and followed the peer-review process to affirm these results. We have trust and confidence in the approach and methodology that produced these results. In addition, the figures for the US are as high or higher than figures found in other countries using a variety of different methods to calculate the number.

Q: Will this new prevalence estimate help us get to a cure for MS faster?
A: Research breakthroughs related to what causes MS and how to cure it are happening at a faster pace than ever before. Having sound information on how many people are living with MS and who gets MS is an important pathway to a cure.

Q: When and how will the prevalence number be updated again?
A: The National Neurological Conditions Surveillance System, which was authorized in 2016 through the 21st Century Cures Act, has been funded and will be able to update prevalence estimates on a regular basis. This is a culmination of more than a decade of work by MS activists and others across the neurologic community. This system will provide important demographic data to help researchers move more quickly toward cures for the millions of people who live with diseases like MS and Parkinson’s.

Q: Why do we only have an estimate of the number of people with MS, versus knowing the exact figure?
A: Unlike for certain infectious disorders, there is no requirement for healthcare providers to report to health authorities when a person is diagnosed with MS. Although a nearly exact count could be made by contacting doctors, hospitals, and other health care facilities, such a study would be prohibitively expensive and almost impossible to implement.

Advertisements

Study Strengthens Link Between Low Vitamin D Levels and Risk of MS

SUMMARY

  • A study based on stored blood samples of 800,000 pregnant Finnish women found that vitamin D levels might predict who is at risk for later developing MS.
  • Vitamin D blood levels of 1,092 women later diagnosed with MS were compared to those of 2,123 women around the same age and region who did not develop the disease.
  • Women who developed MS later had average D levels lower than the women who didn’t.
  • More research is needed on how to best supplement vitamin D and to know whether and who it might help. Read more more about Vitamin D and MS.
  • The study was published on September 13, 2017 in Neurology.

DETAILS
Background: Researchers believe that several genetic and environmental factors influence whether a person will get MS. These factors may also impact the severity of the disease. Scientists are eager to find risk factors for MS that can be modified to possibly prevent MS and reduce disease activity. Research is increasingly pointing to reduced levels of vitamin D in the blood as a risk factor for developing MS, and studies are underway to determine if vitamin D levels influence MS disease activity.

This Study: This study — the largest such study to date – took advantage of a unique resource: stored blood samples from 800,000 Finnish women who had undergone routine prenatal testing during pregnancy. The study was designed to determine whether and to what extent vitamin D deficiency is associated with future risk of developing MS. The team identified 1,092 of the women who were later diagnosed with MS. The researchers compared their vitamin D levels to those of 2,123 women who were about the same age and lived in the same area but did not develop MS. Of those women whose medical records were available for examination, an average of 9.5 years had lapsed between the time of the first blood sample and the date of an MS diagnosis. For this study, classifications of blood levels of vitamin D (25-hydroxyvitamin D) included “deficient” (less than 30 nmol/L) and “adequate” (greater than or equal to 50 nmol/L).

Results: The team found that overall as vitamin D levels increased, the risk of later developing MS decreased. Women with the greatest deficiency in vitamin D had a twofold increase in the risk of developing MS, and those with the highest vitamin D levels had the lowest risk of a later MS diagnosis. Most of the women in the study were considered to have deficient or insufficient levels of vitamin D. Of the women who developed MS, 58 percent had deficient levels of vitamin D, compared to 52 percent of the women who did not develop the disease.

The researchers conclude that the results directly support vitamin D deficiency as a risk factor for MS and that correcting this among reproductive age women may reduce their future risk of developing MS. In addition, a previous study of this same group of women found that maternal vitamin D deficiency during pregnancy doubled the risk of MS in their offspring, and a Danish study found that low vitamin D levels in infants was associated with an increased MS risk in adulthood, suggesting that improving a woman’s vitamin D levels during pregnancy may also reduce the risk of MS in her children.

The study, by a team including Drs. Kassandra Munger and Alberto Ascherio (Harvard T. H. Chan School of Public Health in Boston), was published on September 13, 2017 in Neurology.

Comment: This largest study of its kind to date adds to growing evidence that low levels of vitamin D increase the likelihood of developing MS. Since this study included only women, who were mostly white, the results may not apply to men or to other racial groups. It also did not account for other potential risk factors that may have played a role.

An editorial in the same issue of Neurology by Drs. Ruth Ann Marrie Christopher Beck addresses the question of whether there is enough evidence now to make sweeping recommendations on vitamin D supplementation. They note, “Vitamin D supplementation is a simple intervention that would be highly cost-effective even if it prevents only a proportion of MS cases…,” concluding, “It is time to take an active approach to preventing MS, at a minimum targeting those individuals with an elevated risk of MS, including smokers, the obese, and those with a family history of MS.”  Read more more about Vitamin D and MS

 

Two Small Studies Find Benefits of Exercise for People with MS with Moderate to Severe Problems with Movement

 

Summary

  • Two small studies report on the benefits of exercise for people with MS who have moderate to severe mobility impairments. This research shows the importance of physical activity in enabling people with all forms of MS to live their best lives.
  • The National MS Society provides resources on exercise for people living with all forms of MS, as well as for healthcare providers. Further information on increasing physical activity in adults with disabilities is available from the Centers for Disease Control.

Details
Background: Growing evidence suggests that exercise is good for a person’s overall health and for reducing other health conditions (co-morbidities).  Research in MS has also suggested that exercise training is effective for improving aerobic capacity and muscle strength, mobility, quality of life, and may benefit cognition, fatigue and depression. However, research is limited on exercise options for people with MS who have moderate or severe mobility impairments. Two recent, small studies begin to address this gap.

Exercise for severe mobility impairments: Investigators randomly assigned 12 people with progressive MS to receive total-body recumbent stepper training (similar to climbing stairs) or body weight–supported treadmill training. Both are used for people with severe mobility impairments, but the authors wanted to see if stepper training showed similar benefit to treadmill training, because it is significantly less costly to use and maintain the equipment. Participants completed three weekly 30-minute sessions for 12 weeks. Both training programs were safe, and although participants enjoyed both, stepper training was reviewed more favorably. There were no changes in physical function, but both reduced fatigue and improved quality of life.

The team (Lara A. Pilutti, PhD, now at the University of Ottawa, and former colleagues at the University of Illi­nois at Urbana-Champaign) has published results in the International Journal of MS Care (2016;18:221–229).

A cycling option for non-ambulatory people: Functional electrical stimulation (FES) offers people with significant weakness and mobility problems a cycling option, using low-level electrical impulses to stimulate the activation of leg muscles. Researchers evaluated whether this type of cycling improved symptoms and quality of life in 16 people with moderate to severe MS who were unable to walk. Participants cycled for 30 minutes, two to three times a week for one month. Significant improvements were noted in cycling performance, and physical and psychosocial aspects of fatigue, as well as reductions in reported pain. There were no significant changes in spasticity, cognitive aspects of fatigue, or muscle strength. Further research in larger numbers of people would help to clarify how benefits might be optimized.

The team (Deborah Backus, PhD, PT, and colleagues at the Shepherd Center, Atlanta, GA) report their results in the International Journal of MS Care (Published online, August 9, 2016).

Read More: The National MS Society provides resources on exercise for people living with all forms of MS, as well as for healthcare providers. Further information on increasing physical activity in adults with disabilities is available from the Centers for Disease Control.

Summary

  • Two small studies report on the benefits of exercise for people with MS who have moderate to severe mobility impairments. This research shows the importance of physical activity in enabling people with all forms of MS to live their best lives.
  • The National MS Society provides resources on exercise for people living with all forms of MS, as well as for healthcare providers. Further information on increasing physical activity in adults with disabilities is available from the Centers for Disease Control.

Details
Background: Growing evidence suggests that exercise is good for a person’s overall health and for reducing other health conditions (co-morbidities).  Research in MS has also suggested that exercise training is effective for improving aerobic capacity and muscle strength, mobility, quality of life, and may benefit cognition, fatigue and depression. However, research is limited on exercise options for people with MS who have moderate or severe mobility impairments. Two recent, small studies begin to address this gap.

Exercise for severe mobility impairments: Investigators randomly assigned 12 people with progressive MS to receive total-body recumbent stepper training (similar to climbing stairs) or body weight–supported treadmill training. Both are used for people with severe mobility impairments, but the authors wanted to see if stepper training showed similar benefit to treadmill training, because it is significantly less costly to use and maintain the equipment. Participants completed three weekly 30-minute sessions for 12 weeks. Both training programs were safe, and although participants enjoyed both, stepper training was reviewed more favorably. There were no changes in physical function, but both reduced fatigue and improved quality of life.

The team (Lara A. Pilutti, PhD, now at the University of Ottawa, and former colleagues at the University of Illi­nois at Urbana-Champaign) has published results in the International Journal of MS Care (2016;18:221–229).

A cycling option for non-ambulatory people: Functional electrical stimulation (FES) offers people with significant weakness and mobility problems a cycling option, using low-level electrical impulses to stimulate the activation of leg muscles. Researchers evaluated whether this type of cycling improved symptoms and quality of life in 16 people with moderate to severe MS who were unable to walk. Participants cycled for 30 minutes, two to three times a week for one month. Significant improvements were noted in cycling performance, and physical and psychosocial aspects of fatigue, as well as reductions in reported pain. There were no significant changes in spasticity, cognitive aspects of fatigue, or muscle strength. Further research in larger numbers of people would help to clarify how benefits might be optimized.

The team (Deborah Backus, PhD, PT, and colleagues at the Shepherd Center, Atlanta, GA) report their results in the International Journal of MS Care (Published online, August 9, 2016).

Read More: The National MS Society provides resources on exercise for people living with all forms of MS, as well as for healthcare providers. Further information on increasing physical activity in adults with disabilities is available from the Centers for Disease Control.

Post Navigation