Clinical guidance for people with muscle-wasting conditions and their families

The following guidance is based on advice from a group of neuromuscular clinical experts, working across a wide range of neuromuscular conditions, and who also 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 especially 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.

Will I be impacted more severely if I get COVID-19?

The clinical expert group agrees that many (although not all) people with a diagnosed or undiagnosed neuromuscular condition (in other words non-specified conditions) fall into the official category of being “clinically extremely vulnerable” to COVID-19 and should be practicing shielding (staying at home at all times). People with a neuromuscular condition likely to fall into this group are those;

·        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 abnormal cardiac function as part of 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.

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.

If your condition means that you fall into the “clinically extremely vulnerable” group you should have received a letter or other communication from the NHS confirming this. If you think you fall into this category but have not heard anything, you are advised to contact your neuromuscular specialist team or your GP. If you need contact details for your specialist neuromuscular team, we can help with this.

If you fall into the category of “clinically extremely vulnerable”, it’s advisable that 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. It’s vital they practise stringent social distancing measures and take all the precautions listed above whenever they return to your home.

You may of course require visits from care providers, and these should continue. Your care providers will need to take full precautions to shield you as mentioned above.

See below for more information regarding carers, 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 “clinically extremely vulnerable”.


What is shielding?

Shielding is a practice used to protect the “clinically 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 “clinically 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. The Government is currently advising “clinically extremely vulnerable” people to do this until the end of June.

With advice changing so often, and the uncertainty we all still face, Cure DM would suggest that patients us this as a minimum and also follow the guidance on their shielding letter or personalised medical advice – this may mean some people are shielding until a later date.


Is there specific information for families of people with Duchenne muscular dystrophy?

On 24th April 2020 the journal Muscle Nerve published an article entitled ‘The care of patients with Duchenne, Becker and other muscular dystrophies in the COVID-19 pandemic’.

Leading neuromuscular expert clinicians have also developed this guidance for people with Duchenne, who use steroids:

·        be sure to have a sufficient supply of steroids available at home

·        ensure you have a strategy or at least knowledge of how to deal with the adrenal suppression in case of a severe superimposed infection

·        The World Duchenne Organisation has regularly updated information about COVID-19 and Duchenne muscular dystrophy (people living with Becker muscular dystrophy may also find this a useful resource)

·        where possible, make sure you have an alert or symptoms card to hand, which can help in an emergency.


Latest update: 30.04.2020