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: 14/05/2020

Further to the recent government announcement and latest guidance on COVID-19, we would like to reassure those who are currently shielding that nothing has changed and government advice is to continue shielding at home until 30th June 2020 unless told otherwise by a healthcare professional.

Those who have been identified as extremely vulnerable and at high risk of severe illness due to COVID-19 should have received a text or letter from the government to confirm this.

The NHS Coronavirus Service recommend that those currently shielding check they have important items for the next few weeks, including food and medication. Support is available for those who need additional help or basic care. If you live in England, you can register for this support here.  There is separate guidance for Scotland, Wales and Northern Ireland (links provided below).


Protecting Patients with Mitochondrial Disease

To help control the COVID-19 virus and reduce the risk of infection, the government has ordered the UK population to stay alert and stay at home as much as possible unless for food, exercise, medical need or work that can’t be done from home. When you go outside the house, you should remain at least 2m (6ft) away from other people and adhere to strict hand washing guidelines as soon as you get home. While people in the UK are not being advised to wear masks, they are now being advised to wear ‘face coverings’ on public transport, in shops or other places where social distancing is difficult.

We continue to recommend that mitochondrial patients with specific health complications previously outlined continue to follow the government's shielding guidelines. These include avoiding all non-essential contact, even with members of your household. Other household members do not need to adopt shielding measures, but they should strictly follow the government’s stay at home guidance.

Visits from people who provide essential support such as healthcare, personal support or social care should continue, provided all visitors adhere to strict hand washing guidelines and if close contact is required to deliver care, they should wear appropriate personal protective equipment. Care workers must stay away if they start showing any COVID-19 symptoms, and patients should make a list of alternative people who can help with care if their main carer becomes unwell.

Although schools have closed for many children, we appreciate some households may have key workers in front-line services, so children may still be at school. In this situation, we suggest where possible that the key worker and children still attending school avoid all non-essential contact with the shielded patient with mitochondrial disease and continue to adhere to hand-washing guidelines.

If you feel you are vulnerable or are shielding, seek support from friends, neighbours or local volunteers, informing them that you or a family member with mitochondrial disease is shielding. Ask them for help with shopping and other urgent supplies, posting mail, or just checking that you're OK. Any items delivered to you should be left on your doorstep and physical contact kept to a distance of at least 2m (6ft).

NHS letters for extremely vulnerable people 

Many mitochondrial patients will have received letters from NHS England or directly from their GPs. Patients who have received letters are considered extremely vulnerable and are advised to adopt shielding measures until 30th June 2020 unless otherwise advised by their medical professional.  

Eligibility letters are also important to:

  • prove entitlement to additional community support such as priority shopping delivery slots and access to the governments dedicated food and medicine delivery service.
  • provide evidence of extremely vulnerable status to employers to provide employees with adequate protection in the workplace.

The NHS Highly Specialised Service for Mitochondrial Disorders have recommended that patients with mitochondrial disease and the following conditions should have received letters:

  • Significant myopathy and/or respiratory muscle weakness
  • Patients who have metabolic decompensation with infection e.g. Leigh Syndrome
  • Cardiomyopathy, arrhythmia or heart transplant
  • Chronic kidney or liver disease or organ transplant
  • Stroke-like episodes or encephalopathy or epilepsy
  • Poorly controlled mitochondrial diabetes
  • Swallowing difficulties (dysphagia) where aspiration is a considerable risk
  • Severe gastrointestinal dysmotility due to mitochondrial disease
  • Severe neuropathy and/or autonomic dysfunction
  • Significant cognitive impairment

If you believe you should be classified as extremely vulnerable but have not received a letter, we suggest you urgently contact your GP to discuss this. If you need additional assistance, please email contact@rmd.org.uk and a member of The Lily Foundation Team will be happy to advise you.

COVID-19 (Coronavirus)

COVID-19 is contagious. It can cause a fever, dry cough and in some instances a subsequent severe lung inflammation and respiratory failure. 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 (which tends to occur several days after the initial fever). 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)