Coronavirus – COVID-19
Arrangements are in place to maintain the helpline during the current crisis and to keep the charity running. However we ask you to be patient during this difficult time for us all.
The following advice was given to CMT UK by the team at Queen’s Square and has been reviewed by Prof Mary Reilly and Dr Matilde Laura.
COVID-19 advice for patients with neuromuscular diseases.
The following are general guidelines and are adapted from NHS website and Public Health UK.
Charcot Marie Tooth diseases (CMT) is a condition that affects sensory and/or motor nerves. Your risk is the same as the general public. HOWEVER- there are patients with CMT who have additional problems due to their CMT ( e.g. requiring help with their breathing such as NIV or CPAP at night or those with vocal paralysis). If you are on CPAP or NIV please contact your Respiratory Centre for information.
If you fall frequently or with balance problem please be MINDFUL. We need to bear in mind that A&E and GP services will be limited, diagnostics i.e. X-ray CT scan services will be limited. This will mean delays in all usual hospital operations.
If you are on regular medications contact your local GP services on how to avail your rescripts and their contingency plan in the event of decreased services.
Please visit the Centre for Neuromuscular Diseases website for more information: https://www.ucl.ac.uk/centre-for-neuromuscular-diseases/
COVID-19: Guidelines for the Neuromuscular Service, National Hospital for Neurology and Neurosurgery
Leading experts in neuromuscular conditions in the UK are working with colleagues across Europe to learn from their experience over recent weeks.
At this time, consensus of the clinical opinion is important. Clinicians who work across a wide range of nerve and muscle conditions, and lead the adult and children’s North Star and SMA REACH clinical networks, have reached the following conclusions.
We are advising those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in following social distancing measures.
This group includes those who are:
- aged 70 or older (regardless of medical conditions)
- under 70 with an underlying health condition listed below (ie anyone instructed to get a flu jab as an adult each year on medical grounds):
- chronic (long-term) respiratory diseases, such as asthma, chronic obstructive pulmonary disease (COPD), emphysema or bronchitis
- chronic heart disease, such as heart failure
- chronic kidney disease
- chronic liver disease, such as hepatitis
- chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy
- problems with your spleen – for example, sickle cell disease or if you have had your spleen removed
- a weakened immune system as the result of conditions such as HIV and AIDS, or medicines such as steroid tablets or chemotherapy
- being seriously overweight (a BMI of 40 or above)
- those who are pregnant
Patients with some neuromuscular conditions may also be at particular risk. All people with a diagnosis of a neuromuscular condition and their carers should consider social distancing at this time to minimise the risks of infection transmission.
In addition to those groups above, potential risk groups include those:
on oral steroids or other immunosuppressants (such as methotrexate, azathioprine or mycophenolate). People on steroids should not stop taking treatment and may require increased doses if they become unwell. People on immunosuppressants should not stop taking their medication as a disease flare may lead to the requirement for more treatment in the longer term at respiratory risk (ventilated (tracheostomy, BiPAP, CPAP), Forced Vital Capacity less than 60%, weak cough, Congenital Myasthenic Syndrome or myasthenia gravis, those usually advised to receive the annual influenza vaccine
with cardiac complications in their condition
who have difficulty swallowing such as myotonic dystrophy and OPMD
with risk of decompensation during infection such as mitochondrial disease.
What is Social Distancing?
Social distancing measures are steps you can take to reduce the social interaction between people. This will help reduce the transmission of coronavirus (COVID-19). There is excellent Public Health England published guidance on this.
*We are working hard with NHS England to get this guidance to include people with many neuromuscular conditions to the medical conditions listed on this webpage.
General Health Advice (from DHSC/PHE/FCO, updated 17 March 2020)
- 1. The risk of Coronavirus has been raised from moderate to high.
- 2. All non-essential travel has been discouraged both within and outside the UK. People who are returning to the UK and have symptoms of coronavirus have been advised to self-isolate for 14 days.
- 3. Patients with symptoms to suggest Coronavirus should self-isolate for 7 days and contact 111. This advice is likely to change very regularly. Patients with neuromuscular disease contacting 111 should state that they have a neurological condition and if they are taking immunosuppressant medications state the name of the drug, dose and duration of treatment.
- 4. Preventing Coronavirus infection:
- a. Avoid close contact with any other people, not only those who are unwell.
- b. Active social distancing as above
- c. Hand hygiene is very important for preventing spread of infection – wash hands with soap and water (or use alcohol hand gel) as often as possible especially after going outside.
- d. Cover the mouth and nose when coughing or sneezing with a tissue or a sleeve
- e. There is no evidence that wearing surgical masks reduces the risk to an unaffected individual.
- f. If you have a new continuous cough or high temperature please self-isolate for 7 days. If a member of your family or somebody that you live with has symptoms then your household will need to self-isolate for 14 days.
- 5. Advice from PHE is updated daily https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public
- 6. Consult your patient information booklet for the medication you are taking for specific advice. If you don’t have one please contact your team.
- 7. If you or any members of your family have mild or manageable symptoms suggestive of coronavirus please do not come to the hospital.
- 8. Avoid all unessential travel. Check the government website for updates regarding current travel restrictions – https://www.gov.uk/guidance/travel-advice-novel-coronavirus
People who are immunosuppressed may be at increased risk of COVID-19 infection., and infection may in some cases be more severe.
If you are on IVIg or SCIg or receiving regular PLEX your treatment will not be altered, unless your blood test results indicate that you are at a particularly high risk of infection. IVIG and SCIG augment your immune response but do not suppress it; the treatments offer no specific benefit against COVID19.
If you are already being treated with azathioprine, methotrexate or mycophenolate your care will continue as before. These agents take many weeks or months to leave the body stopping the drug may lead to a flare of symptoms and potentially more risk. Please be very careful to follow the advice in 1-4 above.
If you have already been treated with cyclophosphamide or rituximab your care will continue as before, though the Neuromuscular team will be in contact if you are due repeat treatment soon, to discuss if this treatment will go ahead as planned or be deferred.
If you are waiting to start a treatment such as cyclophosphamide or Rituximab the Neuromuscular Team will be in contact with you to discuss this; in many cases, where possible, this will be deferred.
High dose steroids
- High-dose steroids may increase the risk of developing COVID-19 infection, and potentially the risk of severe infections.
- The decision about whether the symptoms you are experiencing require steroid treatment will be decided by your Consultant, as sometimes the risk of stopping may outweigh the risk of continuing. Please contact us specifically if you are concerned about this, or contact 111 as above if you have symptoms.
Intravenous immunoglobulin infusions (IVIg) do not increase your risk of contracting COVID-19 or being more unwell due to COVID-19. All IVIg treatments are continuing as planned at the National Hospital for Neurology and Neurosurgery. Please do not attend if you are unwell, contact the day care unit on: 0203 448 8988 to reschedule your appointment.
Your consultant will contact you if the there is a specific reason why we should delay your IVIg for now.
If you have a clinic appointment booked with the neuromuscular team, these appointments are almost all being undertaken by telephone. DO NOT come to you clinic appointment unless you are specifically asked to do so. You will be telephoned to either check on your status or to re-schedule. In exceptional circumstances we will ask you to attend.
If you are due to have routine monitoring blood tests for your treatment you will still need to have these blood tests done, either in a hospital or via your GP and we will access the results remotely. Please let us know if you have done this.
If you are unwell, and have any symptoms suggestive of coronavirus- please do not attend outpatients or the hospital unless absolutely necessary, please contact 111 as suggested above.
Should you be advised that you have coronavirus, please do inform the Neuromuscular Team as soon as possible.
Frequently asked questions:
Am I at increased risk?
Currently there is no specific information on whether people living with a muscle-wasting condition are at increased risk of infection with coronavirus. However, what is known is that coronavirus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease. There are no specific guidelines or recommendations yet for patients with a muscle-wasting condition.
What about carers?
Further information for carers is available on the Carers Trust and Carers UK websites.
How can I get assistance with foods and medicines if I am reducing my social contacts?
Ask family, friends and neighbours to support you and use online services. If this is not possible, then the public sector, business, charities, and the general public are gearing up to help those advised to stay at home. It is important to speak to others and ask them to help you to make arrangements for the delivery of food, medicines and essential services and supplies, and look after your physical and mental health and wellbeing.
If you receive support from health and social care organisations, for example, if you have care provided for you through the local authority or health care system, this will continue as normal. Your health or social care provider will be asked to take additional precautions to make sure that you are protected. The advice for formal carers is included in the Home care provision.
What is the advice for visitors including those who are providing care for you?
You should contact your regular social visitors such as friends and family to let them know that you are reducing social contacts and that they should not visit you during this time unless they are providing essential care for you. Essential care includes things like help with washing, dressing, or preparing meals.
If you receive regular health or social care from an organisation, either through your local authority or paid for by yourself, inform your care providers that you are reducing social contacts and agree on a plan for continuing your care.
If you receive essential care from friends or family members, speak to your carers about extra precautions they can take to keep you safe. You may find this guidance on Home care provision useful.
It is also a good idea to speak to your carers about what happens if one of them becomes unwell. If you need help with care but you’re not sure who to contact, or if you do not have family or friends who can help you, you can contact your local council who should be able to help you.
How do you look after your mental wellbeing?
Understandably, you may find that social distancing can be boring or frustrating. You may find your mood and feelings are affected and you may feel low, worried or have problems sleeping and you might miss being outside with other people.
At times like these, it can be easy to fall into unhealthy patterns of behaviour which in turn can make you feel worse. There are simple things you can do that may help, to stay mentally and physically active during this time such as:
- look for ideas of exercises you can do at home on the NHS website
- spend time doing things you enjoy – this might include reading, cooking, other indoor hobbies or listening to the radio or watching TV programmes
- try to eat healthy, well-balanced meals, drink enough water, exercise regularly, and try to avoid smoking, alcohol and drugs
- keep your windows open to let in fresh air, get some natural sunlight if you can, or get outside into the garden
You can also go for a walk outdoors if you stay more than 2 metres from others.
Detailed guidance on risks from coronavirus and the recommended actions are available from the NHS website. We strongly recommend you do visit this website each day for updated information. Please refer to the most up to date information here in a rapidly changing environment in the coming days and weeks.
Where possible do make sure you have an alert or symptoms card to hand which can help in times of an emergency. Contact the CMT UK office if you do not have an alert card.
This World Duchenne Organisation Webinar: on COVID 19 and Duchenne & Becker muscular dystrophy may also be a useful resource for patients with muscle diseases.
17th March 2020
For the up to date current advice visit the NHS website
(updated 18th March 2020)
There are no specific guidelines or recommendations at this time for those with neurological conditions. Currently there is no specific information on whether people living with CMT / HNPP are at increased risk of infection with coronavirus. Generally, coronavirus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions. It would be advisable, if you have CMT / HNPP, to consider yourself a vulnerable person in regard to the virus.
Coronavirus is a virus that can affect the lungs and airways. Symptoms include high temperature and cough that may progress to a severe pneumonia causing shortness of breath and breathing difficulties. The risk of exposure to the virus is likely to change depending on its spread.
Stay at home if you have coronavirus symptoms
Stay at home for 7 days if you have either:
- a high temperature
- a new, continuous cough
Do not go to a GP surgery, pharmacy or hospital.
You do not need to contact 111 to tell them you are staying at home.
Visit NHS for advice on staying at home.
Visit Public Health England for advice on Social Distancing
Keep Safe follow the NHS guidelines
- Always carry tissues with you and use them to catch your coughs or sneezes. Then bin the tissue, and wash your hands – Catch It, Bin It, Kill It
- Wash your hands for at least 20 seconds with soap and water.
- Avoid touching your face; eyes, nose and mouth with unwashed hands.
- Avoid close contact with people who are unwell.
In addition to the steps above, people living with a neurological condition may want to consider:
- Reducing commuting, especially at peak times, as much as possible
- Working from home as and when it is feasible
- Avoiding crowded spaces