What we know about coronavirus continues to change. We understand your concerns, and will aim 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.
This year's autumn boosters and flu vaccinations will begin earlier than planned as a precaution after a new Covid variant was identified.
Vaccines will be offered to adult care home residents and those most at risk first, starting on 11 September.'
There are now no coronavirus restrictions in place across the UK.
Vaccination has proved to be the most effective way to protect those at increased risk from COVID-19 and we would strongly encourage that all adults and children who have mitochondrial disease and are eligible to receive vaccinations against COVID-19 take the opportunity to do so.
Up-to-date information about getting a COVID-19 vaccination can be found at this link https://www.nhs.uk/conditions/covid-19/covid-19-vaccination/about-covid-19-vaccination/
Anyone who is unsure about whether they are eligible to receive a vaccination should check this with their GP or specialist mitochondrial team.
Most people cannot get free COVID-19 tests. You can buy tests in shops but you cannot report the result to the NHS.
There are a small number of patients who are deemed to be of highest risk of catching COVID-19 due to having a weakened immune system. These patients are listed here and will be able to access free lateral flow testing and be prioritised for new treatments.
Please be advised that this list does not include all patients who were previously classed as ‘Clinically Extremely Vulnerable’ or at ‘Highest Risk’ of catching COVID-19 and advised to shield at the beginning of the pandemic.
How to access free lateral flow testing
Patients with mitochondrial disease who believe that they qualify for free testing can order lateral flow tests online through this link; https://www.gov.uk/order-coronavirus-rapid-lateral-flow-tests
If you believe that you or a family member with mito should be eligible for free testing, but after following the link find that you/ your family member are not eligible, we would recommend checking with your GP or mito specialist to get their advice/opinion.
Use of antivirals
We are aware that some patients with mitochondrial disease have been sent priority PCR tests and offered treatment with antiviral drugs after testing positive for COVID-19. However, people with mitochondrial disease are not currently listed as being part of the patient cohort who are considered at highest risk of complications following infection with COVID-19 and therefore require antivirals.
Our medical board support the view that having mitochondrial disease does not automatically put you at higher risk of a more severe reaction, although some individual patients may fall into this category due to complications associated with their condition.
Patients who have received antiviral treatments are most likely to have been identified by their GP as requiring this treatment, so all queries regarding treatment with antivirals should be directed to GP’s in the first instance.
Because every patient with mitochondrial disease presents slightly differently, GPs who are unsure about a patient’s individual risk factors and eligibility for antivirals are encouraged to discuss this with the patient’s specialist team.
Managing your child’s COVID-19 infection at home
Most children with mitochondrial disease who catch COVID-19 will present with a mild infection and can be cared for at home and given plenty of fluids and rest. The use of regular paracetamol and ibuprofen, given as directed on the packaging, can help to manage symptoms including fever. Children should be encouraged to eat small amount of food regularly, particularly easy-to-digest foods such as bananas, yoghurts and custard.
However, we understand that children with mitochondrial disease can quickly become more unwell with symptoms that would produce a mild illness in the general population, and that they may also take more time to recover from illness. If your child has a fever that has lasted for more than 48 hours, or if they still remain unwell after 7 days, you should seek medical advice. We would encourage parents to trust their instincts about their child, and if at all concerned, we would always advise contacting either your GP, mito specialist, or local hospital, or by calling 111 or 999 in an emergency.
Researchers working with The Lily Foundation have published the results of an international study that aims to increase understanding about the risks of COVID-19 in people with Primary Mitochondrial Diseases (PMDs). To read more about this, and for a direct link to the publication, please click here