Many people reached out through their PAG to contact clinicians, and as a result MDUK has compiled the following regarding muscle wasting conditions. please see below for information written and compiled by MDUK which we would like to share.

What does this mean for me, if I have a muscle-wasting condition, or someone in my family does?

We have gathered guidance and advice from a group of neuromuscular clinical experts, who are leaders in their field. They have worked with people with a range of neuromuscular conditions, and they lead the adult and children’s NorthStar and SMA REACH clinical networks.

What should we do?

In addition to making sure you have an alert or symptoms card to hand, which can help in times of an emergency, we recommend that you, and any personal assistants or carers who support you, follow the NHS guidelines.

• Always carry tissues with you and use them to catch your cough or sneeze. Then bin the tissue, and wash your hands, or use a sanitiser gel.
• Wash your hands for at least 20 seconds with soap and water. If you are not shielding, this is particularly important before leaving home, after using public transport (although we recommend that you avoid public transport if at all possible), upon arriving somewhere, before and after eating, and after using the bathroom. Use a sanitiser gel if soap and water are not available.
• Avoid touching your eyes, nose and mouth with unwashed hands.
• Avoid close contact with people who are unwell.

Am I at increased risk of getting COVID-19?

There is currently no specific information on whether people living with a muscle-wasting condition are at increased risk of infection with COVID-19. But the clinical expert group agrees that people with any diagnosed or undiagnosed neuromuscular condition (in other words non-specified conditions) should consider themselves as being at high risk of getting seriously ill from coronavirus and they should practice shielding.

Those who are at high risk of severe illness from COVID-19 fall into the category of being “extremely vulnerable”. This category includes, for example, people on immunosuppression therapy, and people with severe respiratory conditions. People with muscle-wasting conditions are currently not on the government’s list, but we are working with the clinical experts to change this.

One significant proposal is that we propose that people in the group at most risk of serious illness should have their whole household shield, while others should shield themselves but household social distances. This is the group for whole household shielding:

• on oral steroids or other immunosuppressants (such as methotrexate). You should not stop treatment, and if possible ensure that you have a supply at home. If you become unwell, you may need to increase the dose as advised by your specialist service
• at respiratory risk (ventilated (tracheostomy, BiPAP, CPAP), Forced Vital Capacity less than 60%, weak cough, congenital myasthenic syndrome or myasthenia gravis
• usually advised to receive the annual influenza vaccine
• with cardiac complications in their condition
• who have difficulty swallowing, such as those with myotonic dystrophy and OPMD
• with risk of decompensation (functional deterioration of a bodily system) during infection such as mitochondrial disease.

Shielding is particularly important for people who are:

• on oral steroids or other immunosuppressants (such as methotrexate). You should not stop treatment, and if possible ensure that you have a supply at home. If you become unwell, you may need to increase the dose as advised by your specialist service
• at respiratory risk (ventilated (tracheostomy, BiPAP, CPAP), Forced Vital Capacity less than 60%, weak cough, congenital myasthenic syndrome or myasthenia gravis
• usually advised to receive the annual influenza vaccine
• with cardiac complications in their condition
• who have difficulty swallowing, such as those with myotonic dystrophy and OPMD
• with risk of decompensation (functional deterioration of a bodily system) during infection such as mitochondrial disease.

If you fall into this list, it is advisable that if possible your whole family or household practices shielding. If it is not possible for your whole household to shield, you may want to identify one member of the household who is responsible for making essential trips, and who practices stringent social distancing measures and the precautions listed below whenever they return to your home.

We can also share this advice from the Association of British Neurologists, which makes clear that people with a ‘muscle disease’ may be significantly at risk of being severely ill from COVID-19.

You may of course require visits from care providers, and these should continue, with your care providers taking full precautions to ensure that they do not expose you to the coronavirus. See below for more information regarding care workers, including things you may need to consider if you employ your own carers.

Public Health England has more information below about who fits into the category of “extremely vulnerable”.

What is shielding?

Shielding is a practice used to protect the “extremely vulnerable” from coming into contact with COVID-19. It means minimising all interaction with other people, in case they are carrying COVID-19. So those who are extremely vulnerable should not leave their homes. Within their homes, they should minimise all non-essential contact with other members of their household.

If you have a condition that makes you “extremely vulnerable” then you can register for support, such as help with deliveries or getting essential supplies, via the Government website. We know that there are issues around this which we are highlighting and seeking to have addressed.

What does this mean?

You are strongly advised to stay at home at all times, and to avoid any face-to-face contact for a period of at least 12 weeks – this period of time could change.

Letters are being sent by GPs and your specialist neuromuscular teams to those people they consider to be “extremely vulnerable” – if you have not received a letter and feel you fit into this category please contact your specialist neuromuscular team who understand your condition.