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Archive for the tag “multiple sclerosis”

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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18 Jul 2019

New Study Links Obesity to MS, and to Worse Treatment Responses in Children and Teens

SUMMARY:

In a new study from Germany of 453 children and teens with MS, compared with more than 14,000 children without MS, those who were overweight or obese had twice the risk of developing MS, compared with non-overweight children.

They also had significantly more relapses on treatment with first-line treatments, and increased use of second-line treatment. Otherwise, there was no association found between obesity and disease activity, imaging scans, EDSS progression, or other measures.

These findings need to be confirmed with further study. It is important to note that not everyone who is obese during adolescence will develop MS, and also that many people develop MS without having been obese during adolescence.

The team (Brenda Huppke, MD, Peter Huppke, MD, and colleagues at University Medical Center Göttingen, Germany) published their findings in JAMA Neurology (posted online July 15, 2019)
DETAILS
Background: Several risk factors, including genes, exposure to infections, and environmental factors, have been identified as increasing a person’s susceptibility to developing multiple sclerosis. In addition, there is a growing body of evidence that childhood/adolescent obesity can increase the risk of developing MS. In one study, being overweight or obese was associated with an increased risk of developing MS or clinically isolated syndrome (CIS, a first clinical episode suggestive of MS, indicating increased MS risk) in girls, in a study that compared 75 children or teens with MS or CIS with the health records of more than 900,000 healthy children or teens.

Additional research is needed to understand this association. It is important to note that not everyone who is obese during adolescence will develop MS, and also that many people develop MS without having been obese during adolescence.

The Study: The researchers reviewed the medical records of 453 children and adolescents with relapsing-remitting MS. They looked at disease activity captured on imaging scans; treatment information, and EDSS scores measuring levels of physical disability. They also compared body mass index with information obtained on 14,747 children/adolescents in a Germany-wide child health survey.

Results: The team found that both boys and girls who were overweight or obese had twice the risk of developing MS, compared with non-overweight children or adolescents. Comparing responses to treatment with interferon beta or glatiramer acetate, the team reported that obese children had significantly more relapses on treatment, and were more likely to have switched to second-line treatment. Otherwise, there was no association found between obesity and disease activity, imaging scans, EDSS progression, or other measures.

The team (Brenda Huppke, MD, Peter Huppke, MD, and colleagues at University Medical Center Göttingen, Germany) published their findings in JAMA Neurology (posted online July 15, 2019)

Conclusions: This study provides strong support for a link between obesity and development of MS in both boys and girls. It also indicates a significantly worse response to first-line MS treatments and a greater likelihood of switching to second-line treatments among obese children. The authors suggest that obesity may affect pharmacokinetics – how a drug moves into, through, and out of the body. Further research is necessary to confirm these findings, and to understand the mechanism.
 

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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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08 May 2019

Multiple Sclerosis and CBD

Multiple Sclerosis (MS) is a disease that impacts the body’s central nervous system (CNS) including the brain, optic nerves, and spinal cord. MS consists of an abnormal response of the body’s immune system. From here, the immune system targets myelin (a substance that surrounds and insulates the body’s nerves), and myelin gets damaged, which then produces scars (sclerosis). These scars are believed to be the cause of the painful symptoms MS patients experience.

Although MS causes various painful symptoms, over 85 percent of MS patients experience spasticity. Fortunately, though, based on the studies have been conducted on cannabis and MS so far, most indicate that cannabinoids are associated with self-reported spasticity improvements. It has also been found that CBD contains anti-spasm properties. Additionally, the American Academy of Neurology has expressed that cannabis is effective for the treatment of pain and spasticity. Then, one Israel study discovered that cannabis can safely alleviate pain in older MS patients and those with other chronic conditions, such as Crohn’s Disease.

Currently, 20-60 percent of MS patients consume cannabis, and many use topical cannabis products as their primary delivery method. To help treat muscle spasms and pain, it’s common for MS patients to use cannabis topically, so they can apply the medicine onto specific areas of their body. To achieve localized and rapid relief though, it’s recommended to use topical products with one example being CanniMed’s products, from which numerous Canadian MS patients have benefited.

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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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06 Jun 2018

New MS Research

Research on immune activity in MS

Understanding and stopping MS in its tracks requires a better understanding of the role that the immune system plays in this disease. This system is involved both in the inflammatory attacks on myelin and, very possibly, in the injury to axons (the wire-like nerve fibers) that contributes to longer-term disability. Research on the immune system includes studies on:

  • Understanding components of the immune system such as T cells, B cells, and antibodies
  • Identifying new targets for therapeutic intervention while leaving the rest of the immune system capable of fighting infections
  • Identifying substances and processes involved in the injury of axons
  • Identifying the body’s natural immune messenger molecules that can either turn on or turn off immune attacks

Significant progress is being made in understanding the immune system’s involvement in MS, which will help drive breakthrough solutions to change the world for everyone with MS.

We’re making progress

Studies of the immune system in MS laid the groundwork for every disease-modifying therapy now available, and these studies continue to hold promise for finding ways to stop MS. Here are reports of recent progress:

Researchers co-funded by the National MS Society report study results indicating that “Tregs” – regulatory immune cells that are known to be dysfunctional in people with MS – play a role in promoting formation of new myelin following damage. If the results are confirmed through further research, these basic laboratory studies could eventually be translated to promising new therapeutic approaches to stimulating myelin repair to restore function in people with MS. Read more

Treatment with ATX-MS-1467 (Apitope) – an injected immune therapy whose early development was supported by the National MS Society through Fast Forward, the Society’s commercial research funding program – was reported to reduce disease activity on MRI scans in two small open-label studies involving people with relapsing MS. This is an approach to identify pieces of human proteins, called “peptides,” that might be able to reinstate “immune tolerance” – in effect, train immune cells to ignore myelin – to suppress MS attacks. Read more

Scientists at the University of Florida, funded in part by the National MS Society, took a novel approach to turn off immune attacks in mice with an MS-like disease. The team used a harmless virus to deliver a gene coding for a specific component of myelin, a key target of immune attacks in MS. Further research is needed to verify and refine this approach before it can be tested in people. Read more

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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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