What we know about coronavirus is changing day by day. We understand your concerns, and will be doing all we can to provide the latest information and advice for people affected by mitochondrial diseases. Please note the information on this page is intended to supplement, not replace, general NHS guidance. We recommend bookmarking it and checking it regularly for updates.


Updated: 4/11/2020

During the first COVID-19 wave, the government introduced a set of measures known as ‘shielding’ to protect the most clinically vulnerable in our society from exposure to the virus. Many mitochondrial patients fell into this category and were issued with letters via their NHS services, which enabled them to avoid all contact with others, through provision of additional community support and workplace concessions.

Shielding was paused on 31st July 2020 and despite the second wave, the government are not planning to reinstate the infrastructure which previously supported clinically extremely vulnerable patients. This decision is on the basis that many new measures have been introduced in our communities, including the rule of 6, COVID-secure workplaces, and the widespread use of face coverings, all of which they state, has reduced the need for a repeat of such restrictive shielding advice.

The government’s new advice for patients previously categorised as extremely clinically vulnerable can be found here:

https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

2nd Wave - Advice for adult patients

The situation for adult patients is complicated. We understand a lot more about COVID now than we did in March and we also know that age, and underlying chronic illness can contribute to the severity of disease, which may put some adult mitochondrial patients at increased risk of complications.

As mentioned above, the government are not offering any infrastructure to support the same level of shielding through the second lockdown, however if you received a shielding letter in the first lockdown, you should still consider yourself extremely clinically vulnerable. This means you could be at increased risk of serious illness and we advise that you take additional precautions to minimise your contact with others by staying home as much as possible and washing hands regularly and thoroughly.

We understand that supermarkets are still offering priority delivery slots to the elderly/extremely clinically vulnerable and we suggest, where possible, you to reach out to friends and family who may be able to support you over the next few weeks.

You should work from home if you can, but if this is not possible, you should ensure that your employer knows you were previously asked to shield and that you remain extremely clinically vulnerable. Employers have a legal obligation to consider and manage the risks to staff who are most vulnerable to infection (Link: Disability Rights). You may be asked to provide a copy of your original shielding letter as evidence of your vulnerable status. No new government shielding letters will be issued.

By law, all workplaces have to offer a COVID-safe environment, so if you feel uncomfortable with your employers provision to protect you in your current role, you need to tell them and give them the opportunity to address your concerns. You can also ask to be redeployed to a different role or ask to be furloughed. If this is refused, you may wish to request annual leave or unpaid leave depending on your financial situation. If you are still unhappy with your employer’s response you can contact employment support organisations like UNISON which provide very helpful advice surrounding employers legal obligations and employee rights (Link: Coronavirus-rights-work).

If you are comfortable that your employer has put appropriate provisions in place to adequately protect you, you should continue to work but we advise mitochondrial patients to remain extra vigilant, always wear a mask, regularly wash and/or sanitise hands and minimise contact with others. On returning from work in public facing roles, we also recommend you follow decontamination advice provided by The Lily Foundation. 

Advice for families with children with mitochondrial disease

We also understand a lot more about COVID infection in children than we did in March. Unlike adult cases, research studies from around the world have indicated that most childhood cases of COVID are asymptomatic or trigger a mild infection which rarely leads to serious illness. This is also the case in children with rare diseases like mitochondrial disease, where recorded cases have not caused a more serious illness than a normal winter bug.

All educational settings are now required to use PPE and follow strict protocols to minimse infection spread, so it is recommended that children continue to attend school.

There are, however, exceptions for a small minority of children with mitochondrial disease who are ventilated, or are on medications for severe cardiomyopathy. If your child falls into these categories, you should have already received a letter from your consultant advising you take additional precautions, but if you have not, please contact them directly for specific advice.

The other frequently discussed paediatric ‘high-risk’ group includes children with severe immunosuppression, but this is rarely seen in mitochondrial disease and is not the same as a child taking longer to recover from infection (which is commonly seen in mito).

We appreciate that some parents will remain concerned about sending their child into school, as even the common cold can be challenging for some and recovery can be slow. If you have concerns, we suggest you approach your child’s school directly and try and work with them to find a solution. The social, physical and developmental benefits of school are significant for all children, and it is believed that these benefits outweigh the risk COVID poses in school aged children.

If you need any additional support or advice, The Lily Foundation can help you.

COVID-19 (Coronavirus)

COVID-19 is contagious. It can cause a fever, dry cough and loss or change to your sense of smell or taste. Based on the information currently available, most of the reported fatalities have been in older people with pre-existing cardiovascular disease, diabetes and respiratory conditions. It would be reasonable therefore to assume that mitochondrial patients with pre-existing medical conditions could be at increased risk of developing more severe symptoms, but the vast majority would still have only a mild illness.

There are no specific vaccines or treatments available at the moment, so the advice for mitochondrial patients who are worried is to call NHS 111 which is running a COVID-19 enhanced service that will be the entry point for all individuals concerned they may meet the case definition for COVID-19. In the case of medical emergency, you should call 999.  

If you are experiencing symptoms, the general advice for patients with mitochondrial disease would be to treat the fever with paracetamol (unless there is pre-existing liver disease), take plenty of fluids, self-isolate to prevent spread, and seek urgent medical attention if there are signs of shortness of breath / difficulty breathing. For more information see NHS guidelines.

The NHS are recommending that paracetamol is used in preference to ibuprofen to treat the fever and aches associated with COVID-19. People using ibuprofen to treat other chronic health problems should not discontinue use without first discussing with their doctor.

Symptomatic patients should call 111 for additional advice and should not be attending GP surgeries or hospitals unless via ambulance.

More information: 

List of useful contacts

NHS guidelines 

Government guidelines (England)

Government guidelines (Northern Ireland)

Government guidelines (Scotland)

Government guidelines (Wales)