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.
To help limit the spread of coronavirus 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.
The NHS have recently started sending letters to people they consider to be extremely vulnerable. We consider all mitochondrial patients fall into this category and would urge all patients to register on the government website. We recommend registering even if you have not received a letter from the NHS, and regardless of whether you feel you currently need additional support.
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. Care workers must stay away if they start showing any 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 and neighbours, 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).
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.