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Living with M.E.

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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.

The UK Government has now 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.

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 noon on Friday 3 April 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.


Stay at home

The UK Government has introduced three new measures (you can also download as a PDF) to reduce day-to-day contact between people, and reduce the spread of the infection. These are are:

  1. Requiring people to stay at home, except for very limited purposes, specifically shopping for food and medicine; one form of outdoor exercise per day; any medical need or to provide care for a vulnerable person; and travelling to and from work, but only where this absolutely cannot be done from home.
  2. Closing non-essential shops and community spaces
  3. Stopping all gatherings of more than two people in public

Every citizen must comply with these new measures. The relevant authorities, including the police, will be given the powers to enforce them. These measures are effective immediately (from Monday 23 March). The Government will look again at these measures in three weeks and relax them if the evidence shows this is possible.


Testing kits

The Guardian (Wednesday 25 March) reports that "thousands of 15-minute home tests for coronavirus will be delivered by Amazon to people self-isolating with symptoms or will go on sale on high street within days, according to Public Health England [...] Prof Sharon Peacock, the director of the national infection service at Public Health England, told MPs on the Science and Technology Committee that mass testing in the UK would be possible by next week."

Speaking to the Committee (at 13h 18m 08s), Prof Peacock said: "Developing a home test kit for people who have been sick can be tested for the presence of anti-bodies so that if they are positive they are able to go out and back to work. Several million tests have been purchased for use. We need to evaluate them in the laboratory to be clear that they do work as they are claimed to do so. Once they have been tested, and that will happen this week, then once the bulk of the tests arrive they will be distributed to the community.

"There will be a mechanism to order a test through Amazon and then performed at home then sent back to see if they are positive or negative. There are two different models (of tests) it might require you to go to someplace like Boots as it requires a blood prick so you can see if you have antibodies in which case you know you had the infection."


Essential advice

The UK Government has issued guidance on protecting those are are defined, on medical grounds, as extremely vulnerable. This group 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.


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.

Dr Nancy Klimas, Director at the Institute for Neuro Immune Medicine at Nova Southeastern University has shared a video, COVID-19 and M.E./CFS. Dr Klimas recommends following guidelines on hand washing and social distancing, and offers her thoughts on face masks, and taking supplements. She says that people with M.E. “probably are at a greater risk if you're exposed, because one of the underlying problems in M.E. is that the cells that protect you from viruses are less functional. Most of you have plenty of these cells, but they've been working so hard that they've depleted their resources and they're not able to do as much if they come across a virus.”


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: