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Archive for the tag “National Multiple Sclerosis Society”

05 Jan 2021

New advice for people with MS

Advice for people with MS

Current evidence shows that simply having MS does not make you more likely to develop COVID-19 or to become severely ill or die from the infection than the general population. However, the following groups of people with MS are more susceptible to having a severe case of COVID-19:

  • People with progressive MS
  • People with MS over the age of 60
  • Men with MS
  • Black people with MS and possibly South Asian people with MS
  • People with higher levels of disability (for example, an EDSS score of 6 or above, which relates to needing to use a walking stick)
  • People with MS and obesity, diabetes or diseases of the heart or lungs
  • People taking certain disease modifying therapies for their MS (see below)

All people with MS are advised to follow World Health Organization guidelines for reducing the risk of infection with COVID-19. People in the higher risk groups should pay particular attention to these measures. We recommend to:

  • Practice social distancing by keeping at least 1.5 metres* distance between yourself and others, to reduce your risk of infection when they cough, sneeze or speak. This is particularly important when indoors but applies to being outdoors as well.
  • Make wearing a mask a normal part of being around other people and ensure that you are using it correctly by following these instructions.
  • Avoid going to crowded places, especially indoors. Where this is not possible, ensure to wear a mask and practise social distancing.
  • Wash your hands frequently with soap and water or an alcohol-based hand rub (70% alcohol content is considered most effective).
  • Avoid touching your eyes, nose and mouth unless your hands are clean.
  • When coughing and sneezing, cover your mouth and nose with a flexed elbow or tissue.
  • Clean and disinfect surfaces frequently especially those which are regularly touched.
  • Talk to your healthcare provider about optimal care plans, through video consultations or in-person visits where needed. Visits to health clinics and hospitals should not be avoided if they are recommended based on your current health needs.
  • Stay active and try to take part in activities that will enhance your mental health and well-being. Physical exercise and social activities that can take place outside and with social distancing are encouraged.
  • Get the seasonal flu vaccination where it is available and encourage your family to do the same.

Caregivers and family members who live with, or regularly visit, a person with MS in one of the higher risk groups should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.

* (National and international guidelines on physical distancing vary between at least 1 metre and 2 metres. People should consider their national guidance and be aware that these are minimum distances, longer being better.)

Advice regarding disease modifying therapies for MS

Many disease modifying therapies (DMTs) for MS work by suppressing or modifying the immune system. Some MS medications might increase the likelihood of developing complications from COVID-19 but this risk needs to be balanced with the risks of stopping or delaying treatment.

We recommend that people with MS currently taking DMTs continue with their treatment, unless advised to stop by their treating clinician.

People who develop symptoms of COVID-19 or test positive for the infection should discuss their MS therapies with their MS care provider or another healthcare professional who is familiar with their care.

Before starting on any new DMT or changing an existing DMT, people with MS should discuss with their healthcare professional which therapy is the best choice for their individual circumstances. This decision should consider the following information:

  • MS disease course and activity
  • The risks and benefits normally associated with different treatment options
  • Additional risks related to COVID-19, such as:
    • The presence of other factors for a more severe case of COVID-19, such as older age, obesity, pre-existing lung or cardiovascular disease, progressive MS, higher risk race/ethnicity etc, as listed above
    • The current and anticipated future COVID-19 risk in the local area
    • Risk of exposure to COVID-19 due to lifestyle, for example whether they are able to self-isolate or are working in a high-risk environment
    • Emerging evidence on the potential interaction between some treatments and COVID-19 severity

Evidence on the impact of DMTs on COVID-19 severity

Interferons and glatiramer acetate are unlikely to impact negatively on COVID-19 severity. There is some preliminary evidence that interferons may reduce the need for hospitalisation due to COVID-19.

The evidence available suggests that people with MS taking dimethyl fumarate, teriflunomide, fingolimod, siponimod and natalizumab do not have an increased risk of more severe COVID-19 symptoms.

There is some evidence that therapies that target CD20 – ocrelizumab and rituximab – may be linked to an increased chance of having a more severe form of COVID-19. However, these therapies should still be considered as an option for treating MS during the pandemic. People with MS who are taking them (or ofatumumab and ublituximab that work in the same way) should be particularly vigilant regarding the advice above to reduce their risk of infection.

More data on the use of alemtuzumab and cladribine during the COVID-19 pandemic are required to make any assessment of their safety. People with MS who are currently taking these therapies and are living in a community with a COVID-19 outbreak should discuss their current lymphocyte counts with their healthcare professional. (Lymphocytes are a type of white blood cell that helps protect the body from infection). If their counts are considered to be low they should isolate as much as possible to reduce their risk. Recommendations on delaying second or further doses of alemtuzumab, cladribine, ocrelizumab and rituximab due to the COVID-19 outbreak differ between countries. People who take these medications and are due for the next dose should consult their healthcare professional about the risks and benefits of postponing treatment. People are strongly encouraged not to stop treatment without the advice of their clinician

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14 Jul 2020

Survey on Complementary/Alternative Medicine Points to Increasing Use by People with MS

The use of complementary and alternative therapies – including vitamin/mineral supplements, mind-body therapies, diet, and exercise – is widespread in MS (81%), according to researchers from Oregon Health & Science University who report on a survey of 1,014 people with MS. It is also on the rise; the team compared these survey results to those of a similar survey conducted in 2001, and found that use of all therapies increased significantly. Respondents to the current survey were nine times more likely to speak with their neurologist about use of these therapies than in 2001.

Many complementary/alternative therapies are considered to be outside the realm of conventional medicine, although others, including vitamin D, exercise, acupuncture, and cooling strategies, for example, have established their role in comprehensive care through scientific study and clinical trials. The survey results highlight the need for  more research to determine the safety and effectiveness of specific complementary and alternative therapies, conclude the study authors. This study was partly funded by the National MS Society. Lead author Elizabeth Silbermann, MD, is funded by the Society’s Sylvia Lawry Fellowship, which trains individuals to conduct clinical research in MS.

Read more on the OHSU website

Read a scientific summary of the paper in MS and Related Disorders

Read more about complementary therapies and MS, including questions to ask when considering a complementary/alternative therapy

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13 Jun 2020

What Type of MS Do You Have? Experts Clarify How to Describe MS to Improve Care and Clinical Trials

An international committee of MS experts has published a statement that clarifies how to describe the different courses of multiple sclerosis and disease activity. The statement was prompted by inconsistencies in the way MS descriptors are used by the MS community. These clarifications can improve care and access to treatments, and refine the selection of clinical trial participants so that trial outcomes can be better applied to clinical care.

The statement was an effort by the International Advisory Committee on Clinical Trials in Multiple Sclerosis, which is jointly supported by the US National MS Society and the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). The Committee provides perspective and guidance in areas of interest to planning and implementing clinical trials for new agents for the treatment of MS.

“With this published statement, we’re encouraging the healthcare and regulatory community to use the terms as described for the different subtypes of MS and for describing disease activity,” noted Fred Lublin, MD (Icahn School of Medicine at Mount Sinai), who is senior author of the statement and two previous papers defining MS subtypes that were published in 1996 and 2013 under the auspices of the committee. “It’s critical not just for improving patient care, but also for selecting participants for clinical trials, so you are comparing apples to apples.”

Inconsistent use of the terms: The 2013 paper defined four categories of MS based on current clinical course: clinically isolated syndrome (an initial episode of neurological symptoms), relapsing-remitting MS, secondary progressive MS, and primary progressive MS. The paper also recommended adding terms to describe an individual’s current disease state, such as “active” (shown by relapse or changes on MRI) and “progression” (shown by worsening of disability independent of relapse activity). While the time period for the activity was not specified, it was recommended that an assessment be performed at least annually.

Since the 2013 paper was published, there has been confusion in the use of the terms describing a person’s current disease state and the terms have been used without reference to a timeframe. For example, in the prescription indications for recent MS therapy approvals, neither the European Medicines Agency nor the U.S. Food and Drug Administration specified a timeframe for determining disease activity. Moreover, the agencies defined activity differently; the European Medicines Agency defined “activity” as either clinical relapse or MRI-detected inflammation, whereas the U.S. Food and Drug Administration defined “activity” only in terms of relapses.

Clarifying definitions: The recently published statement reiterates the definition of “activity” as clinical relapses or imaging features of inflammatory activity, evaluated annually or over another specified interval. The definition of “progression” is reiterated as clinical evidence of disability worsening, independent of relapses, in individuals in a progressive phase, evaluated annually or over another specified interval. Also, the more general term “worsening” refers to any increase in impairment or disability as the result of residual deficits caused by relapses, or increasing disability during progressive phases of MS.

Future work: “As part of its ongoing activities, the committee plans to continue to reevaluate and refine course descriptors, especially when new evidence-based methods enable pathological distinctions between MS phenotypes, said Professor Alan Thompson, Chair of the International Advisory Committee on Clinical Trials in MS and Dean of University College London’s Faculty of Brain Sciences. “This would vastly improve prognosis, treatment choices, and the development of more selective therapies.”

Read the recently published open access statement, “The 2013 clinical course descriptors for multiple sclerosis: A clarification” by Fred D. Lublin, Timothy Coetzee, Jeffrey A. Cohen, Ruth Ann Marrie, Alan J. Thompson. Published online in Neurology on May 29, 2020.

Read more about types of MS

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02 May 2020

More on COVID-19 and MS

Coronavirus Risk for People Living with Multiple Sclerosis (MS)

MS itself does not increase the risk of getting COVID-19. However, certain factors associated with your MS may increase your risk for complications:

  • Chronic medical conditions, such as lung disease, heart disease, diabetes, cancer, smoking and asthma
  • Significantly restricted mobility, such as needing to spend most of your day seated or in bed
  • Age 65 or older
  • Possibly taking certain disease modifying therapies that deplete immune system cells
  • Severe obesity or BMI higher than 40
  • Living in a long-term care facility

Sometimes, the body’s response to infections, including COVID-19, may cause a temporary worsening of MS symptoms. Typically, these symptoms settle down once the infection clears up. If you are experiencing new MS symptoms or have any concerns about any of your MS symptoms, please contact your MS healthcare provider.

Protecting Yourself from Coronavirus

The Centers for Disease Control and Prevention (CDC) provides recommendations on how to prevent the spread of COVID-19 and what to do if you show symptoms.

Working and Coronavirus (COVID-19)

MS Healthcare ProvidersHealthcare providers who treat people living with MS can find additional information in our Professional Resource Center.

Healthcare Workers Who Have MS

  • There is no increased risk of you getting COVID-19 because you have MS.
  • If you are concerned about your risk of getting COVID-19 because of the DMT you take, please contact your MS provider for advice.
  • There are no special PPE instructions for people with MS. You should follow the same precautions as other healthcare workers. If you are concerned about your risk due to your DMT, please contact your MS provider for advice.

Employee RightsThere are many protections that could be available to you if your employer is not being flexible with work from home options or workplace accommodations. Visit our employment resources page to learn more or contact an MS Navigator to discuss your individual rights and options.

Children with MS

There is no specific advice for children with MS; they should follow the advice above for all people with MS. The CDC has specific recommendations for children and COVID-19.

Pregnancy

At this time there is no specific advice for women with MS who are pregnant. There is general information on COVID-19 and pregnancy on the CDC website.

Additional Resources

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28 Feb 2020

What You Need to Know about Coronavirus

February 27, 2020

What is the coronavirus 2019 (COVID-19)?
Coronavirus 2019 (COVID-19) is a respiratory illness  that can spread from person to person. At this time, it’s unclear how easily the virus that causes COVID-19 is spreading between people.

What are the symptoms of COVID-19?
Most people who contract COVID-19 will have mild symptoms, but some people will have more severe symptoms. Symptoms can include:
• fever
• cough
• difficulty breathing (shortness of breath)

How can I help protect myself?
There are simple everyday preventive actions to help prevent the spread of respiratory viruses.
These include
• Wash your hands often with soap and water for at least 20 seconds. Use an alcohol-based hand sanitizer that contains at least 60% alcohol if soap and water are not available.
• Avoid close contact (at least 3 feet away) with people who are sick.
• Avoid touching your eyes, nose, and mouth with unwashed hands.
• Cover your cough or sneeze with a flexed elbow or tissue, then throw the tissue in the trash.
• Clean and disinfect frequently touched objects and surfaces.

What does COVID-19 mean for people living with MS?
Many disease modifying therapies (DMTs) for MS work by modifying or suppressing the immune system. People with MS who are treated with these therapies can face an increased risk of infections. If you are taking a DMT and believe you have been exposed to COVID-19 or are confirmed to have this infection, please contact your neurologist or primary care healthcare provider.

Other resources

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30 Jun 2019

Stem cells hold promise for MS

Stem cells

There is exciting and innovative research and progress occurring related to the potential of many types of stem cells for slowing MS disease activity and for repairing damage to the nervous system. In light of the urgent need for more effective treatments for MS, particularly for those with more progressive forms of the disease, we believe that the potential of all types of cell therapies must be explored.

Stem cell therapy is any treatment that uses or targets stem cells, which are the types of cells that differentiate into many different specialized cells in our bodies. Stem cells are found in both embryos and adults.

Many types of stem cells are being explored for their potential benefits for treating multiple sclerosis. Only when the results of these and subsequent clinical trials are available will it be possible to determine what the optimal cells, delivery methods, safety and actual effectiveness of these current experimental therapies might be for people with MS.

Although cell based therapy has generated a great deal of interest and holds promise, the field is in its infancy and much more research is needed before cell based therapies become a MS treatment option.

Different Types of Stem Cells

  • HSCs (haematopoietic stem cells) – adult stem cells that are found in bone marrow and blood. HSCs are capable of producing all of the cells that make up the blood and the immune system.
  • MSCs (mesenchymal stem cells) – adult stem cells found in several places in the body, including the bone marrow, skin and fat tissue. They produce cells which help other stem cells function properly.
  • NSCs (neural stem cells) – specialized stem cells responsible for repairing nerve-insulating myelin in the brain. These can be derived from other types of stem cells such as mesenchymal cells.
  • hESCs (human embryonic stem cells) – stem cells derived from donated embryos. They can naturally produce every type of cell in the body. One concern about their potential therapeutic use is that they have been found to cause tumors.
  • iPSCs (induced pluripotent stem cells) are engineered from adult cells to produce many types of cells. One concern about their potential therapeutic use is that they have been found to cause tumors.

www.nmss.org  The National Multiple Sclerosis Society

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23 Dec 2018

Novel Molecule May be Used to Track and Treat MS

Scientists at Purdue used a novel approach to show that a molecule called acrolein is elevated in blood and urine from mice with MS-like disease and from people with MS, compared to those without the disease. Acrolein is normally a waste product, but seems to accumulate in people with neurologic disease, becoming toxic to nerve cells. They are now testing whether acrolein levels correlate with disease activity, to determine if this molecule may eventually be used to identify MS with a simple blood test. Medications targeting acrolein are already on the market, raising its potential as a therapeutic target for MS.

 

Read more in Purdue University News

Read the paper in Frontiers in Neurology

 

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04 Mar 2018

Zinbryta (daclizumab), a Therapy for Relapsing MS, is Withdrawn from Market

  • Biogen and AbbVie have announced the voluntary withdrawal Zinbryta ™ (daclizumab) from the worldwide market.
  • Zinbryta is an immune-modulating therapy that was approved in 2016 for people with relapsing MS and generally reserved for people who had an inadequate response to two or more MS therapies.
  • According to a company press release, the European Medicines Agency had raised new safety concerns related to reports of inflammation of the brain or its surrounding tissues (inflammatory encephalitis and meningoencephalitis) among people taking Zinbryta.
  • Individuals currently taking Zinbryta should contact their healthcare providers to determine alternative treatment options, and to continue safety monitoring. According to the medication guide, this would include monthly blood tests to monitor liver function for up to six months after the last dose.
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25 Aug 2017
3 Comments

Study Questions Influence of High-Salt Diet on MS

SUMMARY

  • Some recent studies have suggested that high intake of salt in the diet might influence MS disease activity and progression, but other studies have not confirmed that link.
  • In work partly funded by the National MS Society, researchers took advantage of data accumulated from a previous clinical trial involving 465 people with possible early signs of MS (CIS) whose salt levels in urine were measured over the course of 5 years.
  • They found no connection between salt intake and MS activity.
  • The study, “Sodium Intake and Multiple Sclerosis Activity and Progression in BENEFIT,” was published in the July 2017 issue of the Annals of Neurology (2017;82:20-29).
  • Although this study does not support a link between high-salt diets and MS disease activity, research suggests that most Americans eat more salt than is recommended by federal guidelines. Reducing dietary salt is considered by most to be beneficial to the heart and circulatory system.

DETAILS
Background: Several recent studies have suggested that dietary salt (sodium chloride) could potentially influence MS disease activity and progression. For example, one study of 70 people with relapsing-remitting MS, who were followed for two years, found that higher levels of salt measured in urine samples were associated with a higher rate of relapses and larger brain MRI lesions. In addition, mice fed a high-salt diet developed a more aggressive course of EAE, a laboratory model of MS. But two studies in pediatric MS did not find a relationship between self-reported salt intake and MS risk or relapse rates. Resolving this question is important because it offers the possibility that reducing salt intake might improve a person’s overall health and their course of MS.

This Study: In work partly funded by the National MS Society, researchers set out to determine if a high-salt diet is associated with faster conversion from a first neurologic episode (known as clinically isolated syndrome or CIS) to a diagnosis of definite multiple sclerosis, or with MS disease activity. Kathryn C. Fitzgerald, ScD (Johns Hopkins School of Medicine), Alberto Ascherio, MD, DrPH (Harvard T. H. Chan School of Public Health) and colleagues took advantage of data accumulated from a previous clinical trial involving 465 participants who participated in a trial called BENEFIT (Betaferon/Betaseron in Newly Emerging Multiple Sclerosis for Initial Treatment) over 5 years. The trial compared benefits of giving interferon to individuals with CIS early versus later. Each person provided an average of 14 urine samples throughout the five-year follow-up. The researchers estimated average long-term sodium intake from the multiple urine samples, adjusting for age, sex, height, weight, where participants lived, and many other variables.

Results: Researchers found that neither average nor high urine sodium levels were associated with conversion to definite MS. They also weren’t associated with new MRI lesions at any point in the five years, relapse rates, or progression of disability. These results suggest that high sodium intake does not play a major role in influencing MS disease course or activity in people treated with interferon, at least in the early stages of the disease.

While the study has several strengths, including its length, large sample size, and systematic collection of data, it has limitations: BENEFIT participants were treated nearly uniformly with interferon, and the results may not apply to people on other therapies or no therapy. In addition, participants in the BENEFIT trial were primarily Caucasian and resided in Europe and Canada, and it isn’t known if similar results would apply to other populations and ethnicities. The results also don’t answer the question of whether salt intake affects the risk of developing MS in the first place.

The study, “Sodium Intake and Multiple Sclerosis Activity and Progression in BENEFIT,” was published in the July 2017 issue of the Annals of Neurology (2017;82:20-29).

Comment: Although this study does not support a link between high-salt intake and MS disease activity, research suggests that most Americans eat more salt than is recommended by federal guidelines. Even in the absence of direct evidence that MS immune activity is influenced by salt, reducing dietary salt is considered by most to be beneficial to the heart and circulatory system.

Read More: Diet, along with exercise, cognitive health, and other healthy behaviors can make a big difference to how you feel as you deal with MS. Learn more about living well with MS

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28 Jul 2017

Researchers Recruiting People with Primary Progressive MS for Genetics Studies – Key to finding treatment options

Primary progressive MS is characterized by steadily worsening neurologic function from the onset of the disease. There are still many gaps in the knowledge we have about what differentiates relapsing-remitting from primary progressive MS, and the underlying mechanisms of primary progressive MS. The MS Genetics Group at the University of California San Francisco is recruiting people with primary progressive MS for a research study involving a one-time blood sample donation with the goal of identifying genetic factors driving the course of the disease. The team also is looking for people without MS who are not related to serve as controls. The team hopes to identify the major genetic factors that play a role in disease presentation and progression. Please note: you do not have to be located in or travel to California to participate. Everything for the study can be done remotely and is free of charge to participants.

Rationale: Specific subtle variations in the human genome are known to play a role in determining who is susceptible to developing multiple sclerosis, and may also influence the course of the disease. People living with MS can make a difference in studies searching for these genes by donating their DNA with a blood sample. Identifying the exact location and role of MS genes could help determine who is at risk for developing the disease and can provide clues to its cause, prevention, and lead to better treatments.

Details: Once an individual has completed the initial online intake form, they will receive a call from the study coordinator to discuss details and answer any questions. The consent form and health information privacy form can be signed electronically. Participants will then be emailed a link to two additional short online surveys and sent a blood-collection kit. The kit includes everything necessary for the blood draw, which can be taken to your local Quest Diagnostics Lab and returned in a prepaid envelope to the lab at UCSF. There is no cost to participants.

Contact: To participate or request additional information, please complete a brief intake survey.
OR you may contact UCSF directly:
Clinical Research Coordinator
UCSF Multiple Sclerosis Genetic Susceptibility Project
675 Nelson Rising Lane, Suite 235A, Box 3206
San Francisco, CA 94158
Email: msdb@ucsf.edu
Toll Free Phone: 1-866-MS-Genes (1-866-674-3637) or Office Phone: (415) 502-7202

 

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