Coronavirus and M.E./CFS

A A A Text size
M.E. and Coronavirus

M.E. and Coronavirus

This page was most recently updated on Friday 16 July 2021.

Coronaviruses (CoV) are a large family of viruses that cause illness, ranging from the common cold to more severe diseases such as Severe Acute Respiratory Syndrome (SARS-CoV). Coronavirus disease (Covid-19) is a respiratory tract infection discovered in 2019, and not been previously identified in humans.

This page has been set up to keep track of up-to-date advice regarding Coronavirus. We know that the situation is changing quickly and we are monitoring this closely. Click on the links for guidance on the restrictions, and the lifting of these in England, Wales, Scotland and Northern Ireland.

For information on the vaccine, please visit our Covid-19 vaccine page.

Please note we are not medically trained, and are note able to give medical advice. We have consulted with our Medical Advisor who agrees that we should share information from government health sources.

Need to speak to someone right now?

  • If you need information or support, including help finding practical local assistance, please contact our Information, Support and Advocacy Service on 0117 927 9551 or send us an email and we will do what we can to help.
  • The UK Government has set up a page online where users from England, Northern Ireland, Scotland, and Wales can find what help they can receive from the UK gov and other organisations. This includes finding support relating to: what to do if you’re feeling unsafe where you live, or if you’re worried about someone else; paying bills/rent/mortgage; getting food; employment problems; what to do if you’re worried about going in to work; having somewhere to live; mental health and wellbeing, including information for children.
  • Some local authorities have a Covid helpline; you can search for this online or contact us (see above) for support.
  • In Northern Ireland, you can contact a freephone helpline, set up to help those in vulnerable groups to access information, advice and support, on 0808 802 0020. You can also email or send a text to ACTION to 81025.
  • The Scottish Government has set up a helpline for vulnerable people, including those with M.E. Tel: 0800 111 4000. Callers will be automatically connected to their local authority who will support them to access the service they need, such as essential food and medication, links to local social work services for vulnerable children or adults, emotional support and contact with local volunteer groups.
  • The Scottish Intercollegiate Guidelines Network (SIGN) have produced a leaflet on Long Covid for patients in Scotland. This booklet covers what Long Covid is, its symptoms, diagnosing it, and the care plans currently being put in place by SIGN.

Worried about restrictions lifting?

We are hearing from people with M.E. who are understandably worried about the lifting of restrictions and the increased risk of catching Coronavirus.

Please get in touch for support if you would like to talk to someone who understands, and/or discuss options for practical support in your area, including you local Mutual Aid group.

You could also:

While Action for M.E. is not yet a member of National Voices so couldn't co-sign, we fully support their letter of Tuesday 13 July, signed by 56 healthcare charities, asking Prime Minister Boris Johnson to urgently address the needs of disabled people and those with long-term conditions who remain at high risk from the virus.

Increased risk, shielding and clinically extremely vulnerable (CEV) people

No specific advice has been shared for people with M.E. However, the Government website notes that people classed as clinically vulnerable could be at higher risk of severe illness from coronavirus and should be especially careful to follow the rules and minimise contact with others.

Given that M.E. is listed as a neurological condition by NHS England, SNOMED (the system used by GPs in England for electronic health records) and the World Health Organisation, we include people with M.E. in this category of moderate risk of developing complications from Coronavirus. Please see Government advice for people more at risk from coronavirus (updated Monday 12 July 2021) to learn more.

It remains the case that the clinically extremely vulnerable (CEV) list of does NOT include people with M.E. unless they have additional conditions that are listed in this category.

If you think you have Covid-19

If you have any of these three coronavirus symptoms, even if mild, use this service to get a polymerase chain reaction (PCR) test as soon as possible:

  • a high temperature
  • a new, continuous cough
  • you’ve lost your sense of smell or taste or it’s changed

You can order a PCR test kit to be sent to your home or book an appointment at a walk-in or drive-through test site.

If you have symptoms, you and everyone you live with must immediately self-isolate. Do not leave home until you get your test results, except to post a test kit or for a PCR test appointment.