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: 23/12/2020

Tier 4 Shielding Update

The government have reinstated shielding for patients living in Tier 4 and classified as clinically extremely vulnerable (CEV).

Initial categorisation as CEV will be communicated by letters/emails/text directly from central government based on previously held lists. In addition, GP's can add patients to this list based on their own clinical judgement if they feel a patient has been omitted. This request can be escalated to a specialist if the GP is unsure.

CEV Patients are advised not work or attend educational settings. Other members of the household including partners, parents, carers, siblings can attend work/educational settings. CEV patients should stay indoors as much as possible, avoid shops, and avoid all but essential contact with others. CEV patients should still attend hospital appointments unless advised and can exercise outdoors. Full guidance can be found here.

Shielding letters act as evidence to your employer/educational setting of CEV status. They should also ensure you have access to free medicine delivery and priority shopping deliveries.  CEV patients can request a formal shielding note online if they need this (Shielding Letters)

We understand there will be significant concern with regards to partners/parents/siblings of CEV patients still attending work/education settings and we would advise that where possible, attempts are made to appeal to workplaces/educational settings to try and minimise risk. Failing that, we recommend decontamination guidelines are followed.

We realise that many adults and the majority of children with mitochondrial disease will not receive CEV status but may still consider themselves to be clinically vulnerable.

Our advice to families that remain concerned, is to follow the shielding advice as far as possible regardless of their official status, as we know many patients with mitochondrial disease take longer to recover from any infection than the general population.

We advise all members of the household follow strict social distancing guidelines and avoid touching things that people you do not live with have touched, including food and drinks. You should continue to regularly wash hands with soap and water for 20 seconds, avoid touching faces and clean frequently touched surfaces.

We realise this is again a very unsettling time for our mitochondrial community and the Lily team are here to support you all as best we can.

General advice for adult patients

The situation for adult patients is complicated. We understand a lot more about COVID now than we did in March and we also know that age and underlying chronic illness can contribute to the severity of disease, which may put some adult mitochondrial patients at increased risk of complications.

We advise that you take additional precautions to minimise your contact with others by staying home as much as possible and washing hands regularly and thoroughly.

We understand that supermarkets are still offering priority delivery slots to the elderly/extremely clinically vulnerable and we suggest, where possible, you reach out to friends and family who may be able to support you over the next few weeks.

Working during Covid

Employers have a legal obligation to consider and manage the risks to staff who are most vulnerable to infection (Disability Rights).

By law, all workplaces have to offer a COVID-safe environment, so if you feel uncomfortable with your employer’s provision to protect you in your current role, you need to tell them and give them the opportunity to address your concerns. You can also ask to be redeployed to a different role or ask to be furloughed. If this is refused, you may wish to request annual leave or unpaid leave depending on your financial situation. If you are still unhappy with your employer’s response you can contact employment support organisations like UNISON which provide very helpful advice surrounding employer’s legal obligations and employee rights (Coronavirus-rights-work).

If you are comfortable that your employer has put appropriate provisions in place to adequately protect you, you should continue to work but we advise mitochondrial patients to remain extra vigilant, always wear a mask, regularly wash and/or sanitise hands and minimise contact with others. On returning from work in public facing roles, we also recommend you follow our decontamination advice

General advice for families of children with mitochondrial disease

We also understand a lot more about COVID infection in children than we did in March. Unlike adult cases, research studies from around the world have indicated that most childhood cases of COVID are asymptomatic or trigger a mild infection which rarely leads to serious illness. This is also believed to be the case in children with rare diseases like mitochondrial disease, where recorded cases have not caused a more serious illness than a normal winter bug.

All educational settings are now required to use PPE and follow strict protocols to minimse infection spread, so it is recommended that children continue to attend school.

There are, however, exceptions for a small minority of children with mitochondrial disease who are ventilated or are on medications for severe cardiomyopathy. If your child falls into these categories, you should have already received a letter from your consultant confirming your categorisation as CEV and advising you take additional precautions. If you have not, please contact them directly for specific advice.

The other frequently discussed paediatric ‘high-risk’ group includes children with severe immunosuppression, but this is rarely seen in mitochondrial disease and is not the same as a child taking longer to recover from infection (which is commonly seen in mitochondrial disease mito).

We appreciate that some parents will remain concerned about sending their child into school, as even the common cold can be challenging for some and recovery can be slow. If you have concerns, we suggest you approach your child’s school directly and try and work with them to find a solution. The social, physical, and developmental benefits of school are significant for all children, and it is believed that these benefits currently outweigh the risk COVID poses in school aged children.

Updated: 17/12/2020

Covid-19 vaccine (BioNtec/Pfizer vaccine)

The BioNtec/Pfizer vaccine was approved for use by the Medicines & Healthcare products Regulatory Agency (MHRA) on the 7th December 2020.

The NHS England Highly Specialised Service for Rare Mitochondrial Disorders Services in London, Oxford and Newcastle are very pleased that a vaccine is available and support the Government’s vaccination programme.

As with the seasonal flu vaccine, we would expect adults with mitochondrial disease to take up the offer of the COVID-19 vaccine, and only those who are currently immunosuppressed, pregnant or breastfeeding should not be vaccinated.

Priority and eligibility

The vaccination is to be given to the following groups as a priority:

• People over 80 years
• People in care homes
• People who are clinically vulnerable.

A full list of people eligible for the vaccine can be found via the link below:

https://www.gov.uk/government/publications/covid-19-vaccination-why-you-are-being-asked-to-wait/why-you-have-to-wait-for-your-covid-19-vaccine#i-am-in-one-of-the-listed-groups-why-do-i-have-to-wait

People who are not in the groups above will have to wait until more supplies of the COVID-19 vaccines are available. When more vaccine becomes available, the government will offer it to more groups of the population.

Pregnancy and breast feeding

At present there is no information on the safety of COVID-19 vaccines in pregnancy, either from human or animal studies. The Government’s Joint Committee on Vaccination and Immunisation is therefore following a precautionary approach and DOES NOT currently advise COVID-19 vaccination in pregnancy.

Breastfeeding mothers should WAIT until they have finished breastfeeding and then have the vaccine. If you were given the first dose of vaccine when you were breastfeeding then you are advised not to have the second dose until you have finished breastfeeding.

Children

There are no data available on COVID-19 vaccination in young children and only limited data in adolescents. At present there are no plans to prioritise children for vaccination and the Joint Committee on Vaccination and Immunisation advises that only those children at very high risk of exposure and serious outcomes should be offered vaccination. The majority of extremely vulnerable children should therefore continue to shield.

Doses

The vaccine is given in two doses, three weeks apart. Full immunity occurs after a further week (so, an individual will develop immunity 4 weeks after the initial injection).

Suitability

The BioNtec/Pfizer vaccine is suitable for vegetarians (does not contain egg or egg based preparations) and does not contain any animal or human product.

People who are immunosuppressed or immunocompromised, for example transplant recipients, should talk with their specialist doctor or team as to whether they may be able to have the vaccine.

People with a history of severe allergic reaction are currently being advised not to take the vaccine.

Effectiveness of vaccine

This vaccine has been tested in a large group of people, of all ages, and is 95% effective. It works well in men and women and people of different ages, races and ethnicities. People with pre-existing conditions who were stable (they had not needed a change in treatment or hospitalisation during the 6 weeks prior to the study) also received the vaccine, and the vaccine was safe and effective in this group of people as well.

Side effects

No serious side effects were reported in the study testing this vaccine.

It is normal to expect some discomfort at the injection site and some mild symptoms such as raised temperature. These symptoms should settle within 24-48 hours. Mild painkillers can be taken after the injection as needed (paracetamol etc.)

Further information

There is no information currently about the other vaccines as they are currently being assessed by the regulator (Medicines & Healthcare products Regulatory Agency).
More information can be found on the NHS Coronavirus (Covid-19) vaccine page: https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/coronavirus-vaccine/

COVID-19 (Coronavirus)

COVID-19 is contagious. It can cause a fever, dry cough and loss or change to your sense of smell or taste. 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. 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)