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• Policy and Advocacy response to COVID-19

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*Last Updated: Thursday, December 3rd, 2020

Questions on COVID-19? Email ResourceCenter@mdausa.org

COVID-19 Recommendations for the Neuromuscular Community

Current guidelines for COVID-19 exposure have focused on specific communities related to risk to travelers, the elderly and those with conditions that affect respiratory health. In order to inform the neuromuscular community of specific information which is relevant to COVID-19, MDA has prepared the following information which expands on the CDC recommendations for the general population in order to keep the neuromuscular community up to date on best practices for managing the global spread of SARS-CoV-2.

A few general points will help patients and families to have a better understanding of the current situation:

  • About COVID-19

    The new virus is called SARS-CoV-2, which is part of the family of betacoronaviruses that are common in people and various animals, including camels, cattle, cats, and bats. The original spread from live animal markets in China has now continued with person to person transmission leading to global spread which is evolving rapidly. The disease caused by SARS-CoV-2 is now known as COVID-19.

    The virus is spread from 1) person-to-person exposure (principal means of transmission) and 2) surfaces exposed to the virus. Exposure is by respiratory droplets produced when an infected person coughs or sneezes leading to transmission to others in close proximity. A challenge is that some transmission can occur before an infected individual becomes ill making it hard to isolate that individual. The highest risk of spreading is from those that have symptoms of fever and respiratory illness. Late in the illness there is the potential for gastrointestinal infection and exposure from stool. Spreading from infected surfaces can be managed by careful hand washing (see below).

  • Symptoms

    Symptoms may appear 2-14 days after exposure. People with the following symptoms or combination of symptoms might have contracted COVID-19:

    • Coughing
    • Shortness of breath or difficulty breathing

    Or at least two of the following symptoms:

    • Fever, Chills, Repeated shaking with chills, Muscle pain, Headaches, Sore Throat, and New Loss of Taste/Smell
  • What to do if you are sick?

    For neuromuscular disease (NMD) patients, it is important that you seek prompt medical attention if you or anyone in your household is identified with symptoms consistent with COVID-19 or for documented exposure to an individual who has tested positive. Before seeking care, you should contact your healthcare provider and tell them that you have symptoms consistent with COVID-19 or have been exposed to someone who has or is being evaluated for COVID-19. It is important to notify your healthcare provider of your symptoms and potential exposure prior to entering a healthcare provider’s office to ensure proper precautions can be taken to help keep other people in the office or waiting room from getting infected or exposed. Contact your healthcare provider or health department to see if you should be tested. Your healthcare provider will provide guidance for having your symptoms evaluated and monitored.

    If you have a medical emergency and need to call 911, notify the dispatch personnel that you or a member of your household has, or is being evaluated for SARS-CoV-2. You should immediately get emergency medical care if you are having an emergency warning sign (including trouble breathing. It is important that you call ahead to the facility and notify them if you or a member of your household has or is being evaluated for SARS-CoV-2.

    The CDC has developed guidelines to slow down the spread of COVID-19 if you are sick. The World Muscle Society also has some guidelines for the NMD community surrounding COVID-19.

  • Prevention and Management

    There is currently no preventative vaccine or specific treatment for COVID-19. The best way to prevent illness is to avoid being exposed to the virus. However, as a reminder, CDC always recommends everyday preventive actions to help prevent the spread of respiratory diseases, including:

    • Avoid close contact with people who are sick.
    • Avoid touching your eyes, nose, and mouth.
    • Stay home when you are sick and separate yourself from others until it is safe.
    • Ask your healthcare provider for advice and testing.
    • Cover your cough or sneeze with a tissue, then throw the tissue in the trash, and immediately wash or sanitize your hands
    • Clean and disinfect frequently touched objects and surfaces using a regular household cleaning spray or wipe
    • Follow CDC’s recommendations for using a cloth face covering.
      • Choose masks that have two or more layers
      • Make sure mask covers nose and mouth
      • Wash mask regularly
    • CDC does recommend wearing a cloth face covering to reduce the spread of infection in case you are infected and not showing symptoms.
    • Cloth face covering should be used to help prevent the spread of the disease to others. The use of medical grade face masks are reserved for healthcare workers and some first responders.
    • Wash your hands often with soap and water for at least 20 seconds, especially after going to the bathroom; before eating; and after blowing your nose, coughing, or sneezing.
    • If soap and water are not readily available, use an alcohol-based hand sanitizer with at least 60% alcohol. For information about hand washing, see CDC’s Handwashing website.
    • Clean hands if you have been in contact with items and surfaces in a public setting that may be touched frequently by other people.
    • For information specific to healthcare, see CDC’s Hand Hygiene in Healthcare Settings.
    • Practice Social Distancing to reduce the spread of COVID-19. CDC recommends to stay at least 6 feet apart.

    These are everyday habits that can help prevent the spread of several viruses. CDC does have specific guidance for travelers.

  • Caregivers and Household Members

    It is important that caregivers and household members take all necessary precautions to avoid the risk of contracting COVID-19 and spreading the illness to someone with a neuromuscular disease. We recommend that neuromuscular patients and caregivers work together to identify a backup caregiver who will be able to provide care for the neuromuscular patient in the event that the caregiver gets sick. In addition to the preventative measures listed above, caregivers should also wash their hands or use hand sanitizer before and after providing care (such as feeding, bathing, and dressing), wear a cloth

    face covering, clean and disinfect frequently touched objects and surfaces to help decrease the risk of exposure for the patient. Use EPA approved disinfectants that are effective against COVID-19.

    The CDC website lists additional precautions for People at Risk for Serious Illness from COVID-19 and Guidelines for Caregivers at Home. The World Muscle Society on COVID-19 has additional guidelines for the the NMD community.

  • Guidelines for Healthcare Professionals

  • Reopening Guidelines

  • COVID-19 Clinical Trial

    The Department of Health & Human Services (HHS), in coordination with NIH and Operation Warp Speed, has launched a central web portal called Combat COVID (https://combatcovid.hhs.gov/).

    Visit combatCOVID.hhs.gov to learn more and please consider linking to this important public resource from your organization website.

  • Vaccinations

    • Visit CDC’s Vaccine Information page to learn more about vaccine safety for you and your family.
    • CDC is making coronavirus disease 2019 (COVID-19) vaccination recommendations for the United States based on input from the Advisory Committee on Immunization Practices (ACIP). ACIP is a federal advisory committee made up of medical and public health experts who develop recommendations on the use of vaccines in the U.S. public. ACIP holds regular meetings, which are open to the public and provide opportunity for public comment.
  • Additional Resources

COVID-19 and Myasthenia Gravis/Lambert-Eaton Myasthenic Syndrome

An international working group of MG experts has just released recommendations regarding treatment practices for MG and Lambert-Eaton Myasthenic Syndrome (LEMS) during this pandemic of Covid-19. Read the article here, or Download the PDF.

General Information

How to stay prepared from Ready.gov
Resources from the World Health Organization

Resources from the CDC

References:

  1. Centers for Disease Control and Prevention