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 here is guidance only and is intended to supplement, not replace, NHS advice.
Updates are published by the Lily Foundation with the support of the UK’s Mitochondrial Highly Specialised NHS Services.
Spring 2022 Booster Programme
On 21st February 2022, the Joint Committee of Vaccination and Immunisation (JCVI) advised a fourth vaccination against COVID-19 for individuals at highest risk of severe COVID-19. This extra spring dose should be given to people who fall into one of these three categories;
- adults aged 75 years or over
- residents in a care home for older adults, and
- individuals who are 12 years or over who are severely immunosuppressed.
This means that many patients who were previously classed as Clinically Extremely Vulnerable (CEV) will not be offered an additional booster at this time. It is therefore not expected that patients with mitochondrial disease will be eligible for the spring booster dose, although some individual patients may fall under one of the 3 categories mentioned above.
Access to free Lateral Flow Tests across the United Kingdom
Guidance around who can access free lateral flow tests has recently changed, and there are now differences across the four nations of the UK;
England and Scotland
In England and Scotland, access to widespread free lateral flow and PCR testing for COVID-19 has ended. Most people in England and Scotland no longer need to take a coronavirus test even if they have symptoms and should follow guidance on staying home if unwell. However, there are a small number of patients who are classed as being at highest risk of catching the virus and qualify for free testing. Further information can be found below.
Wales and Northern Ireland
In Wales and Northern Ireland, widespread asymptomatic Lateral Flow Testing has ended, and PCR testing sites have now closed. However, patients with symptoms, as well as those who do not have symptoms but are classed as being at high risk of catching COVID-19, are still able to order free tests online.
Patients who are highest risk of catching COVID-19
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 will be able to access free lateral flow testing and will be prioritised for new treatments.
Each of the nations have produced country-specific guidance, which can be found here;
For Northern Ireland
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. This means that in England and Scotland, not all mito patients will now automatically be eligible for free lateral flow testing, unless they fall into one of the categories listed above.
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.
For further information
Please be aware that COVID-19 guidance is regularly updated. For specific guidance related to each of the four nations, please visit the appropriate webpage;
England - https://www.gov.uk/coronavirus
Wales - https://gov.wales/coronavirus
Northern Ireland - https://www.nidirect.gov.uk/campaigns/coronavirus-covid-19
Relaxation of remaining COVID-19 restrictions from 24th February 2022
Since March 2020, the medical and scientific community has learned a lot about COVID-19. At the start of the pandemic very little was known about risk factors from COVID-19 and vaccines were unavailable, so the UK Government took a precautionary approach and advised ‘clinically extremely vulnerable’ groups to follow shielding advice. As vaccines and medical treatments have been developed, the government has gradually removed restrictive guidance for those at an increased risk of COVID-19, removing all remaining restrictions on 24th February 2022.
We understand that for people with mitochondrial disease who were previously considered to be clinically extremely vulnerable, the relaxing of restrictions may be worrying. However, the protection given to individuals through the vaccination programme has meant that people with mitochondrial disease are now advised to follow the same precautions as the rest of the general public in order to reduce their risk of catching COVID-19. This includes;
- getting vaccinated
- letting fresh air in, if meeting indoors, or meeting outside
- wearing a face covering in crowded and enclosed spaces, especially where you come into contact with people you don’t usually meet, and when rates of transmission are high
- staying at home if you are unwell;
- taking a test if you have COVID-19 symptoms, and staying at home and avoiding contact with other people if you test positive
- washing your hands, and following advice to ‘Catch it, Bin it, Kill it’.
Full government guidance on ‘Living with Covid’ can be found here;
The legal requirement to work from home has now ended, and people with mitochondrial diseases should discuss their return to work with their employer.
Employers have a legal duty to protect their workers from the risk of harm, and your employer should be able to tell you the measures that they have put in place to ensure your health and safety at work.
Many workplaces are continuing to offer flexible or ‘hybrid’ working options including working from home and this may be something that you can explore with your employer.
It is important that children attend school, not only in terms of their education but also for their emotional and mental wellbeing and their long-term development. If you have concerns about your child attending school, you should arrange to meet with staff to discuss the measures that have been put in place to reduce the risk of COVID-19, as well as any further measures that can help your child attend safely.
Updated government guidance can be found here
COVID vaccinations and boosters
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 who have mitochondrial disease and are eligible to receive two doses of a vaccination and a third booster takes the opportunity to do so.
If you have not yet received your two primary doses and a booster dose, please contact your GP or book your vaccination appointment online. Anyone who is unsure about whether they are eligible to receive a vaccination should check this with their GP or specialist mitochondrial team.
Vaccinations for children
Following a study in over 2000 children aged 12-15 years, which generated additional data about safety and effectiveness, the approval of the adult 30 microgram dose of the Pfizer BioNTech vaccine was extended to children aged between 12-15 years in June 2021. All young people aged 12 to 15 years are now being offered 2 doses of the vaccine 12 weeks apart.
In December 2021, the MHRA approved the paediatric formulation of the 10 microgram dose of the Pfizer BioNTech vaccine for primary vaccination of children aged 5-11 years. Since 31st January 2022, at-risk children aged between 5 and 11 years old have started to be offered 2 doses of an approved vaccination which should be given 8 - 12 weeks apart. This will be extended to all other 5-11 year olds from April 2022.
Again, we would recommend that all children with mitochondrial disease who are offered the vaccine should receive this provided that they are eligible to do so.
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.