Covid 19 Health for Mito Patients

What we know about COVID-19 (Coronavirus) is changing day by day. We understand your concerns, and are doing all we can to provide the latest information and advice for people affected by mitochondrial diseases. We recommend bookmarking this page and checking it regularly for updates. Please note the information here is guidance only and is intended to supplement, not replace, NHS advice

Updated: 04/04/2020

Registering for support as an extremely vulnerable person 

It is possible to register for support on the government website if you live in England and have a medical condition that makes you extremely vulnerable to coronavirus. The situation in Scotland, Wales and Northern Ireland is different but similar schemes are being put into place. For all health services it is crucial to work closely with your GP.

The NHS Highly Specialised Services for Rare Mitochondrial Disorders have prepared a letter which is going to GP's (with a copy to the patient) for all patients under its care which highlights mitochondrial patients who are considered extremely vulnerable. This letter has also been shared with other clinicians who care for patients with mitochondrial disease not seen in the Highly Specialised Service. 

The letter specifies the following:

The following conditions in patients with mitochondrial disease make them extremely vulnerable and eligible for government support:

  • 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

We continue to recommend that these patients should be shielding.

Patients not looked after by the Highly Specialised Service should should contact their hospital consultant and request that a confirmation letter is urgently sent to their GP. Lily can help with this if required and provide a template letter.  Please contact [email protected] for more information. 

Protecting Mito Patients through Shielding

To help limit the spread of COVID-19 the government has now ordered the UK population to stay at home unless for food, limited exercise, medical need or essential work. If you need to 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.

We continue to recommend that mitochondrial patients with additional health complications adopt 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 mito patient, 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).

COVID-19 (Coronavirus)

COVID-19 is contagious. It causes 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 mito patients 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). 

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: 

Useful contacts

NHS guidelines 

Government guidelines (England)

Government guidelines (Northern Ireland)

Government guidelines (Scotland)

Government guidelines (Wales)