• Help us to support others – donate now and change a life

    Donate now

Living with M.E.

  • A
  • A
  • A
Text size
Coronavirus and M.E./CFS

Coronavirus and M.E./CFS

This page has been set up to keep track of up-to-date advice regarding Coronavirus and M.E. We know that the situation is changing quickly and we are monitoring this closely. We are also regularly updating our services, support and useful contacts page with resources that you may find helpful. Please note we are not medically trained, and are note able to give medical advice. We have consulted with our Medical Advisers who agree 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 Crisis, Advocacy and Support Service on 0117 927 9551 or send us an email, and we will do what we can to help.
  • The UK Government has launched a Coronavirus information service on WhatsApp. To use it, add 07860 064422 in your phone contacts and then send the word "Hi" in a WhatsApp message to get started.
  • 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.
  • 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

Please be aware that scams are among the most prevalent types of crime in the UK, and Coronavirus is creating a perfect environment for fraudsters to thrive. Please stay informed and keep yourself safe.

  • Which? has published a useful article to help you spot scams.
  • The UK Government has set up a SHAREChecklist website to help you check what is evidence-based information, and what is false.

This page was last updated at 9am Monday 1 June 2020.

What is Coronavirus?

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 a respiratory tract infection, that was discovered in 2019 and has not been previously identified in humans.

Essential advice

The UK Government's guidance on protecting those are are defined, on medical grounds, as extremely vulnerable does not include people with M.E. (unless they have additional conditions that are listed in this category). The UK Government is asking people to register “if you have a medical condition that makes you extremely vulnerable to coronavirus. For example, you’ll be able to ask for help getting deliveries of essential supplies like food.” Please be aware that the criteria is very specific. Our understanding is that you are only eligible for this support if you received a letter from the NHS asking you to stay home for 12 weeks.

It remains essential that people with M.E. follow existing advice about social distancing “to reduce social interaction between people in order to reduce the transmission of Coronavirus.” It is intended for use in situations where people are living in their own homes, with or without additional support from friends, family and carers. If you live in a residential care setting, other guidance is available. They are advising those who are at increased risk of severe illness from Coronavirus to be particularly stringent in following social distancing measures. This means those who are:

  • aged 70 or older, regardless of medical conditions
  • aged under 70 with a listed underlying health condition [...including] chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy diabetes.

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 increased risk of severe illness from Coronavirus.

Lockdown and social distancing

From Monday 1 June, lockdown is easing for people in England. You can spend time outdoors, including private gardens and other outdoor spaces, in groups of up to six people from different households, following social distancing guidelines. Those considered at increased risk of severe illness from Coronavirus (including those with underlying conditions, such as M.E. - see "Essential advice" above) continue to be advised to "stay at home as much as possible and, if you do go out, take particular care to minimise contact with others outside your household." See section 9. Clinically vulnerable people of the guidance for Staying alert and safe (social distancing).

The Welsh Government has amended the requirement from "stay at home" to "stay local." This means that as long as you are within your local geographical area and are outside, you will no longer be subject to previous restrictions. "You will not, however, be able to meet outside with members of more than one household, and social distancing and good hygiene practices should continue to be followed," said Mark Drakeford MS, First Minister in a written statement.

The Scottish Government is now advising that you can take part in outdoor recreation alone or with members of your household and/or members of one other household at a time, providing that physical distancing of at least 2 metres is maintained between the different households at all times. If people from 2 households are meeting, you should meet in small numbers – no more than 8 people in total at a time. You should not meet people from more than 1 other household each day. There is also updated guidance on support for the non-shielding at risk (NSAR) group.

In Northern Ireland, everyone should be staying at home and following social distancing measures. Older people and vulnerable people, including those with underlying health conditions and pregnant women should be particularly strict when following them.

If you experience COVID-19 symptoms

The most common symptoms of COVID-19 are a new continuous cough and/or a fever/high temperature (37.8C or greater). A new continuous cough is where you:

  • have a new cough that’s lasted for an hour
  • have had three or more episodes of coughing in 24 hours
  • are coughing more than usual.

If you start to experience symptoms, please follow UK Government advice about self-isolating, specifically:

  • If you live alone and you have symptoms of coronavirus illness (COVID-19), however mild, stay at home for 7 days from when your symptoms started.
  • If you live with others and you are the first in the household to have symptoms of coronavirus, then you must stay at home for 7 days, but all other household members who remain well must stay at home and not leave the house for 14 days. The 14-day period starts from the day when the first person in the house became ill.

If your symptoms worsen during home isolation or are no better after 7 days, contact NHS 111 online. If you have no internet access, you should call NHS 111. For a medical emergency dial 999.

The advice for anyone in any setting is to follow these guidelines on hand washing and respiratory measures, from Public Health England and NHS Inform in Scotland:

  • Wash your hands more often than usual, for 20 seconds using soap and hot water, particularly after coughing, sneezing and blowing your nose, or after being in public areas where other people are doing so. Use hand sanitiser if that’s all you have access to.
  • To reduce the spread of germs when you cough or sneeze, cover your mouth and nose with a tissue, or your sleeve (not your hands) if you don’t have a tissue, and throw the tissue away immediately. Then wash your hands or use a hand sanitising gel.
  • Clean and disinfect regularly touched objects and surfaces using your regular cleaning products to reduce the risk of passing the infection on to other people.

Advice for people with M.E.

Other than than on social distancing above, no specific advice has been shared for people with M.E. If you are concerned, we urge you to seek professional medical advice.

The British Association of British Neurologists says "The risk of complicated COVID-19 infection is increased in certain groups, including those over 70 years, with long-term conditions or a weakened immune system." Its detailed guidance (26 March) does not cover M.E.

The Scottish Government has produced a patient information leaflet for people with neurological conditions, which lists specific conditions are potentially associated with high risk, but not including M.E.

Looking after yourself

As well as following health advice to avoid catching or spreading coronavirus, please reach out for emotional support if you need it. Consider taking breaks from watching, reading, or listening to news stories, including social media. Hearing about the pandemic repeatedly can be upsetting.

There are useful resources online to support looking after your mental health, including from BBC News. Please be aware that advice relating to exercise/activity will not be taking into account the impact of M.E. and your need to carefully balance activity, energy and rest.

You can: