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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog is to provide information on various medical conditions, medications, treatments, for your personal knowledge and to keep you informed of current health-related issues. It is not a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.

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Friday, March 13, 2020

UPDATED information: The coronavirus and MS – What You need to know - ALL MS Patients need to Read this message

Last updated: 13th March 2020


 

Global COVID-19 advice for people with MS
  provided by: MS International Federation

COVID-19 is a new illness that can affect your lungs and airways. It is caused by a novel coronavirus that was first detected in people in China in December 2019 and has since spread to other parts of the world.
There is currently no evidence on how COVID-19 affects people with multiple sclerosis (MS). The advice below was developed by MS neurologists and research experts from MSIF’s member organisations. Click here to download the full statement including the list of consulted individuals and organisations.
This advice will be reviewed and updated as evidence about COVID-19 becomes available.

Advice for people with MS

People with underlying lung and heart conditions and those aged over 60 years are more likely to experience complications and become severely ill with the COVID-19 virus. This group will include many people living with MS, especially those with additional health complications, mobility issues and those taking some MS treatments.
All people with MS are advised to pay particular attention to guidelines for reducing the risk of infection with COVID-19. Older people with MS, especially those who also have lung or heart diseases should take extra care to minimise their exposure to the virus. The World Health Organization recommendations include:
  • Wash your hands frequently with soap and water or an alcohol-based hand rub
  • Avoid touching your eyes, nose and mouth unless your hands are clean
  • Try to keep at least 1 metre distance between yourself and others, particularly those who are coughing and sneezing
  • When coughing and sneezing, cover your mouth and nose with a flexed elbow or tissue
  • Practise food safety by using different chopping boards for raw meat and cooked foods and wash your hands between handling them.
In addition, we recommend that people with MS should:
  • Avoid public gatherings and crowds
  • Avoid using public transport where possible
  • Where possible, use alternatives to face-to-face routine medical appointments (for example, telephone appointments).
Caregivers and family members who live with, or regularly visit, a person with MS should also follow these recommendations to reduce the chance of bringing COVID-19 infection into the home.

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 a COVID-19 infection but this risk needs to be balanced with the risks of stopping treatment. We recommend that:
  • People with MS currently taking DMTs continue with their treatment.

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

  • Before starting on any new DMT, people with MS discuss with their healthcare professional which therapy is the best choice for their individual disease course and disease activity in light of COVID-19 risk in the region.

  • Those who are due to start on a DMT but have not yet done so, should consider selecting a treatment that does not reduce specific immune cells (lymphocytes). Examples include: interferons, glatiramer acetate, or natalizumab. Medications that reduce lymphocytes over longer intervals include alemtuzumab, cladribine, ocrelizumab and rituximab.

  •  The following oral DMTs may reduce the ability of the immune system to respond to an infection: fingolimod, dimethyl fumarate, teriflunomide and siponimod. People should carefully consider the risks and benefits of initiating these treatments during the COVID-19 pandemic.

  • People with MS who are currently taking alemtuzumab, cladribine, ocrelizumab, rituximab, fingolimod, dimethyl fumarate, teriflunomide or siponimod and are living in a community with a COVID-19 outbreak should isolate as much as possible to reduce their risk of infection.
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.

Advice regarding aHSCT

Autologous Haematopoietic Stem Cell Treatment (aHSCT) includes intensive chemotherapy treatment. This severely weakens the immune system for a period of time. People who have recently undergone treatment should extend the period they remain in isolation during the COVID-19 outbreak. People who are due to undergo treatment should consider postponing the procedure in consultation with their healthcare professional.

Advice for children or pregnant women with MS

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 US Centre for Disease Control and Prevention website.
There is no specific advice for children with MS; they should follow the advice above for people with MS.

More information from the World Health Organisation.

You can also find out the answers to some commonly asked questions about COVID-19 on the World Health Organization’s website.
Find out more about COVID-19 in the short informational video below, from the World Health Organization.


This article was published by  MS International Federation

and shared for YOUR Benefit by #MSViewsandNews
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Thursday, March 12, 2020

MS Views and News listing of MS Patient educational program postponements

Dear MS Community


As an MS patient and a human being, I truly do understand the need for each of us to remain healthy and to keep our families as healthy as can be, as well.

Though we know the importance of MS educational events for the learning and socializing, we also know when not to risk the safety of those in our community.

Due to the Coronavirus Pandemic outbreak, we have "postponed" our MS educational programs as showing below. Please know, that each of these events will be rescheduled later in the year.


3/18 - Dallas-Irving, TX
3/28 - MS Spring Summit, Davie, FL.
4/4   - Cincinnati, OH
4/6   - Dayton, OH
4/18 - Memphis, TN
4/20 - Paducah, KY

Decision on May events will be decided in early April

All that were registered for these events, will remain registered and will be informed of the date changes.

We expect also, to provide a few virtual programs during this unfortunate outbreak.

If you have any questions for us, please direct all emails to:
  info@msviewsandnews.org  (copy and paste this email into your address bar)

Stay Healthy and Safe


Sincerely,

Stuart Schlossman
Founder & President
   and MS patient
MS Views and News
@msviews.org 



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The Power of Relationships When it Comes to Advanced MS

Written by: Cathy Chester , an Empowered Spirit

This post is part of a paid collaboration between myself and Novartis. All opinions expressed are, as always, completely my own.
Living with multiple sclerosis (MS) is like riding a roller coaster: the ride is long and unpredictable, there are tremendous ups and downs, and you can experience physical or emotional distress without warning. 
relationships
Since I was diagnosed back in the 1980s, I’ve written many articles on the importance of nurturing relationships, and for good reason. It’s a fact that our lives are richer and healthier when we have the love and support of others. But when you live with a chronic illness like MS, cultivating close ties is even more important. The unpredictability and unrelenting nature of the disease can be scary and overwhelming. Having someone stand by your side during your darkest hours can boost self-worth and help you cope with any traumas that come your way.
relationships
Strong connections of unconditional caring and compassion can reduce anxiety, stress, depression, and feelings of loneliness. They help you manage the unpredictable and often frustrating road you’re traveling. 
Unfortunately, relationships often suffer when illness strikes. For example, soon after my diagnosis, I volunteered as a support group leader. When I entered the meeting room I noticed that half of the women sat in wheelchairs. During the meeting, I found that many were filled with anger, their spouses having left them or verbally abused them after they were diagnosed with this debilitating disease. It also became apparent that the women were upset that a newly-diagnosed patient thought she could help them, and I can understand why. They suffered heart-wrenching hurt and humiliation based solely on their disabilities. Having just been diagnosed, I was not yet equipped to lead them.
Since then, I’ve heard many stories of abandonment, neglect, or abuse. It’s a double-whammy to receive a devastating diagnosis and then be deserted by a loved one. There’s a deep sense of loss that leads to feelings of betrayal, doubts about one’s self-worth, and other emotions that can darken one’s mental health. 
It’s tricky to maintain healthy relationships while living with an unpredictable illness. 
Patients like me who live with relapsing remitting multiple sclerosis (RRMS) endure symptoms that wax and wane and are not always apparent to others. It is challenging. Yet those with progressive MS face hurdles that are very visible and even more formidable. Those with progressive MS depend on the assistance of a cane, a walker, or a wheelchair to remain ambulatory; this requires tremendous patience and understanding from a care partner. 
It is common for those with advanced MS to lose partial or full use of their hands and or legs. They require assistance with their activities of daily living (ADL), such as bathing, cooking, cleaning, eating, shopping, toileting, incontinence, paying bills, managing money, and using transportation.1 Such patients experience a significant loss of independence. 
Social activities for those with progressive MS present accessibility issues that need to be addressed to ensure a fun and safe way of life. 

CLICK HERE to continue reading
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Tuesday, March 10, 2020

re: COVID-19 - An Important read: Recommendations by The National MS Society’s National Medical Advisory Committee


The National MS Society’s National Medical Advisory Committee recommends the following:
1)      People with MS should follow CDC guidelines and these additional recommendations for people at risk for serious illnesses from COVID-19.

2)      People with MS should continue disease modifying therapies (DMTs) and discuss specific risks with their MS healthcare provider prior to stopping a DMT.

3)      Before starting a cell depleting DMT* or a DMT that carries warnings of potentially severe increase in disability after stopping**, people with MS and their MS healthcare providers should consider specific risks (e.g. age, comorbid health conditions, location) and benefits.

These recommendations are the expert opinion of the National Medical Advisory Committee and are based on their clinical experience and assessment of the limited data available regarding COVID-19 and MS DMTs. They have been endorsed by the Consortium of Multiple Sclerosis Centers (CMSC) and members of the MS Coalition***. We are continuing to monitor this quickly evolving situation and these recommendations may be modified as more data becomes available.

* Cell depleting therapies include: Lemtrada, Mavenclad, Ocrevus and Rituxan (used off-label in MS)

** DMTs with a warning of potentially severe increase in disability after stopping include: Gilenya and Tysabri

*** Members of the MS Coalition include: 
Accelerated Cure Project for Multiple Sclerosis, Can Do MS, Consortium of Multiple Sclerosis Centers, International Organization of Multiple Sclerosis Nurses, MS Views and News, 
Multiple Sclerosis Association of America, Multiple Sclerosis Foundation, 
National Multiple Sclerosis Society and United Spinal Association 



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Monday, March 9, 2020

Transportation Assistance Grant offered by MS Foundation

he Transportation Assistance Grant program was established to help members of the MS community remain as independent as possible, and ensure all people with MS have the transportation necessary to get the best medical care.

The program provides funding for reasonable paratransit fees or minor auto repair. In partnership with Lyft and Uber, the program can also provide funding for transportation to and from appointments for MS care, limited to neurologist visits and infusion centers, at no cost to the person with MS.

How does it work?
To qualify for the program a person must have a documented diagnosis of MS. For transportation through Lyft or Uber, the applicant must be able to enter the vehicle independently or with the help of a caregiver who will accompany them, and any mobility aids they require must fit in a standard vehicle trunk. They must also have a cellular device capable of receiving and sending text messages.

How to apply
Individuals with MS can apply for this program online at msfocus.org; or request an application form by emailing transportation@msfocus.org, or call 888-673-6287.
Please note: Restrictions may apply.
Click here to complete an online application




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