Coronavirus and M.E./CFS
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M.E. and Coronavirus

M.E. and Coronavirus

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.

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.

This page was last updated at 12:30pm on 3 August 2020.


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 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
  • 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.

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.

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 who 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). People classed as 'extremely vulnerable' were being advised to shield and were able to access government support up until 31 July.

The government announcement guidance page notes that, as of 1 August, shielding advice for the extremely vulnerable has been paused, though they should continue to strictly follow social distancing measures. With this, government support for those deemed extremely vulnerable has also now stopped; however people who had already registered for priority access to supermarket deliveries will keep it.

There is separate advice given on the government website regarding local restrictions for people living in areas with an outbreak of Coronavirus.

It remains essential that people with M.E. follow existing advice about social distancing 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 experience COVID-19 symptoms

The most common symptoms of COVID-19 are a new continuous cough, a fever/high temperature (37.8C or greater), and/or a loss of, or change in, your normal sense of taste or smell (anosmia). 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 10 days from when your symptoms started and arrange to have a test to see if you have Covid-19.
  • 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 10 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 10 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.


Lockdown and social distancing

On 6 July, changes were made to UK lockdown which meant that people classed as extremely vulnerable no longer have to shield from people they live with. This also allows for up to six people from different households to meet outdoors, while some people may also form a ‘support bubble’ with one other household provided one of the two households has no more than one adult in it.

From 1 August, the government paused shielding, which could be introduced if the transmission of COVID-19 starts to rise significantly. This means that the government are no longer advising extremely vulnerable people to shield, while the support from the National Shielding Service of free food parcels, medicine deliveries and care has stopped. NHS Volunteer Responders will carry on delivering the food, prescriptions and essential items to the extremely vulnerable, and those who registered by 17 July will remain eligible for priority supermarket slots.

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).

In Northern Ireland, vulnerable people, which includes people over the age of 70 and pregnant women, are no longer being advised to shield, but should continue to stay home as much as possible.

As of 22 Jul, the Scottish Government is advising that people from up to five households can meet outdoors for gatherings or to take part in physical activities and people from up to three households can meet indoors. In all instances social distancing of two metres should be adhered to. You should not meet people from more than 4 other households each day. There is also updated guidance on support for the non-shielding at risk (NSAR) group.

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.


Wearing a face covering

With lockdown measures gradually being eased, the government have outlined instructions for the wearing of face coverings in public. This has been done separately for England, Northern Ireland, Scotland, and Wales. Advice on the use of face coverings in the context of Covid-19 has also been set out by the World Health Organisation.

England

As of Friday 24 July 2020, government instruction for people in England states you must by law wear a face covering in the following settings:

  • public transport and indoor transport hubs
  • shops and supermarkets
  • banks, building societies, and post offices.

Measures can be taken if people do not comply with this law. Transport operators can deny service or direct someone to wear a face covering. If necessary, the police and Transport for London authorised officers can issue fines of £100 (halving to £50 if paid within 14 days).

There are exemptions to the instructions regarding wearing a face covering in England. The details for this are set out on the government website.

Northern Ireland

Government information for Northern Ireland states that face coverings were made mandatory on public transport and in public transport stations on Friday 10 July. As is the case in England, there are exceptions to this rule, with detailed provided on the page linked.

Scotland

Government information in Scotland states that wearing a face covering is mandatory for:

  • people inside any indoor establishment that offers goods/services for sale or hire
  • all customers, staff, and operators on public transport.

The government information for Scotland linked above also notes the details for exceptions and reasonable excuses to these rules.

Wales

Government information for Wales states that, as of Monday 27 July 2020, it is mandatory for people to wear a three-layer face covering while on public transport. The Welsh Government also advises that people wear three-layer face coverings in other situations where it is difficult to maintain a two metre distance from others.


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. 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: