ME Association Full Guidance: Coronavirus and ME/CFS by Dr Charles Shepherd | 31 March 2020

March 31, 2020



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Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

Introduction

This new blog contains important new information and guidance that has emerged since the last main ME Association update was published on Tuesday 24 March.

It features comprehensive and up to date details on all aspects of coronavirus and ME/CFS, and includes all the latest information and guidance from the UK Government.

We will continue to keep you up to date on any new developments via MEA social media and answer any questions, where we can, on MEA Facebook.

Please look after yourself and stay safe. ME Connect – the telephone helpline – is open morning, afternoon and evening every day of the week if you want to speak to someone for information or support.

Overview

1. Controlling the spread of the virus

As predicted, the number of new cases here in the UK has continued to rise quite steeply:

  • As of 9.00am on 30 March 2020, a total of 134,946 people have been tested, of which 112,805 were confirmed negative and 22,141 were confirmed positive.
  • As of 5pm on 29 March 2020, 1,408 patients in the UK who tested positive for coronavirus (COVID-19) have died.
  • Source: UK Government.

The situation remains very serious in Italy, Germany and Spain. Several parts of the USA – New York in particular – are now experiencing a very serious increase in numbers.

  • Everyone must stay at home to help stop the spread of coronavirus.
  • You should only leave the house for 1 of 4 reasons:
    • shopping for basic necessities, for example food and medicine, which must be as infrequent as possible
    • one form of exercise a day, for example a run, walk, or cycle – alone or with members of your household
    • any medical need, or to provide care or to help a vulnerable person
    • travelling to and from work, but only where this absolutely cannot be done from home
  • These 4 reasons are exceptions – even when doing these activities, you should be minimising time spent outside of the home and ensuring you are six feet (2 metres) apart from anyone outside of your household.
  • Source: NHS Choices.

Stricter measures relating to social distancing are now being brought in. However, further urgent action needs to take place to deal with issues such as crowded public transport – especially on certain parts of the London tube network – and employers who are not introducing measures that will help to ensure their employees are not working closer than six feet (two metres) apart and are receiving appropriate protective equipment.

It’s too early to know whether the new social distancing measures are being effective but there are some very early signs that they could be. We should have a much better indication in two to three weeks time. The hope is that the number of new cases will then start to reach a plateau, possibly by the middle of April, and then start to slowly decline.

New research from America suggests that to be perfectly safe the space between people should be more than six feet (two metres). So, on a personal basis, I am now trying to increase my distance when outside to nearer twelve feet (four metres) wherever possible.

News item:

Academic paper in Journal of American Medical Association:

2. Testing for the virus

Following a very unsatisfactory initial approach to getting testing done, it does now appear that testing for evidence of both past infection (the antibody test) and current viral infection (the antigen test) is going to be rapidly increased.  

This should mean that health and other key workers will know if they have, or have had, the virus and will also know when they are not infective and can go back to work.

Testing for people who have symptoms, and are being managed at home, is not the main priority right now. But I hope that this will soon be the case. 

The aim is to rapidly ramp up to testing to a level of 25,000 tests a day with the new antibody test becoming available this week.

3. What to do if you have symptoms suggestive of coronavirus infection 

The advice here remains the same as last week in that people with symptoms, or suspected symptoms, should contact NHS 111 for further advice:

If symptoms become more severe, especially difficulty with breathing, speak to NHS 111 or your GP.

Do not go to your GP surgery or local hospital. But your GP can speak to you on the phone.

If symptoms worsen, especially if you become short of breath or drowsy, you must get in contact again – as hospital admission may then be necessary.

New emergency hospitals are being prepared for serious cases all around the UK – including the use of the Excel Centre in London.

4. ME Association working arrangements

We issued a statement last week to provide information on all aspects of our work and the services we provide. Almost all our key activities are continuing as normal – the main change being that we have closed Head Office in Buckingham and office staff are now working from home.

The main impact here is that we will not be able to send out any paper literature, purple books, or merchandise from the office for the foreseeable future. But ME Connect – the telephone helpline – remains operational, seven days a week, for information and support.

ME Association statement:

5. Employment

We are receiving an increasing number of queries relating to employment issues.  As a result, we produced a separate guide to employment, coronavirus and ME/CFS:

6. Shopping – Food and Medicines

Concerns about the delivery of food and medicine to people who are confined to their homes – the vulnerable and extremely vulnerable – have been repeatedly raised during this past week.  

The ME Association, along with our charity colleagues in Forward ME, sent a letter to the Government and the main supermarkets, to express our deep concerns and requesting urgent action to help those most in need.

Some people are now able to access home delivery slots or click and collect slots via supermarkets online especially if they let the supermarket know they are vulnerable, are regular users of the service and pay monthly for a delivery option.

Most supermarkets are now opening specifically for vulnerable people and those that care or support them, during special times each week. Check supermarket websites for more information, but if you need someone to shop for you, these might offer a good option.

So, there are signs things might be improving, but for most people, home delivery and supermarket access remain a concern.

It’s worth noting that there are now a huge number of community volunteer groups being set up all around the country who can provide volunteers to do shopping, collect prescriptions etc. – we now have a very active one with over 100 volunteers in the Cotswold village where I live, for example.

Some local councils are also assisting with coordinating aid and some local shops who don’t normally deliver are now offering delivery.

7. Government Guidance: The vulnerable and extremely vulnerable

The two lists produced by the government have, not surprisingly, caused some confusion.

As we have made clear all along, people with ME/CFS should be regarded as vulnerable in relation to coronavirus infection. This is because there is a strong risk that they will suffer a significant exacerbation of ME/CFS symptoms, or a relapse, if they catch coronavirus.

Anyone with a chronic neurological condition, or other condition on the vulnerable list, or because of their age, should be practicing stringent social distancing measures:

ME/CFS is not included as a specific condition in the new list of people who are regarded as being extremely vulnerable. However, if you have another medical condition that is on the extremely vulnerable list, you may be at very high-risk of developing serious respiratory complications from the infection.

If this is the case, then register as an extremely vulnerable person by visiting this Government website. You will be entitled to additional help and support – including home delivery of shopping and medications if you need them.

You should also be practising shielding measures and avoiding all contact with other people for 12 weeks from the date you receive your letter from NHS England (if you haven’t received a letter by 30 March you are advised to contact your GP surgery).

Please note that if you are taking a drug called fludrocortisone for Postural Orthostatic Tachycardia Syndrome (PoTS), which helps to increase blood volume, this drug can cause immune system depression.

One of the categories in the extremely vulnerable list is, “People on immunosuppression therapies sufficient to significantly increase risk of infection”. It could be worth speaking to your GP to see if they think given your personal situation, you are at increased risk of infection.

8. Research

Research that is being funded through the MEA Ramsay Research Fund is continuing where possible and Dr Shepherd chaired a video conferencing meeting of the Biobank Steering Group last week.

The ME Biobank is continuing to operate but no patient contact is being made in relation to blood sample collection. We are also processing funding for an exciting new research project – although it remains uncertain when this can start.  

A new warning from the FDA about the potential dangers associated with coronavirus and faecal microbiome transplants (FMTs) illustrates how this infection is going to have an impact on all kinds of research activity relating to ME/CFS, especially any studies that require patient involvement.  

We are in contact with all the research groups we fund where patient contact is involved and are discussing how this affects the progress of their research.

FDA announcement:

9. The new NICE clinical guideline on ME/CFS 

In my capacity as a member of the committee that is preparing the new NICE clinical guideline on ME/CFS I took part in two days of video conferencing meetings on 17 and 18 March.  

However, NICE has decided to halt all further work on this guideline due to many of the clinical staff on the committee (myself included) being heavily involved with our duties in relation to coronavirus. 

My personal view is that it now seems very unlikely that we will be able to meet the current target of publishing the new NICE guideline in December 2020.

NICE has also been contacted about guidance on how people with serious pre-existing health problems should be managed if they must be admitted to hospital with coronavirus infection.

10. Can pets catch and transmit the infection?

The view from the experts at present is that humans cannot catch the virus from pets and pets cannot catch the virus from humans. However, this is another area of scientific uncertainty and to err on the side of caution, you should avoid touching other people’s pets, and avoid your own pets licking you!

11. Possible forms of treatment  

As noted in our main update below, experimental treatments are now being assessed. The latest development is the use of what is called convalescent plasma where blood plasma from people who have been infected, recovered, and developed antibodies is given to those who are infected and those who care for them in an attempt to reduce or avoid full-blown infection:

ME Association Full Guidance: 31 March 2020


Background

The ME Association guidance on all aspects of coronavirus infection in relation to ME/CFS is being published each Tuesday where possible to take account of the rapidly changing situation here in the UK. 

As predicted, the number of new cases here in the UK has continued to rise quite steeply:

  • As of 9.00am on 30 March 2020, a total of 134,946 people have been tested, of which 112,805 were confirmed negative and 22,141 were confirmed positive.
  • As of 5pm on 29 March 2020, 1,408 patients in the UK who tested positive for coronavirus (COVID-19) have died.
  • Source: UK Government.

Although there are cases throughout the UK the largest numbers are in London and the South East, with a further ‘hot spot’ in the West Midlands.

  • Everyone must stay at home to help stop the spread of coronavirus.
  • You should only leave the house for 1 of 4 reasons:
    • shopping for basic necessities, for example food and medicine, which must be as infrequent as possible
    • one form of exercise a day, for example a run, walk, or cycle – alone or with members of your household
    • any medical need, or to provide care or to help a vulnerable person
    • travelling to and from work, but only where this absolutely cannot be done from home
  • These 4 reasons are exceptions – even when doing these activities, you should be minimising time spent outside of the home and ensuring you are six feet (2 metres) apart from anyone outside of your household.
  • Source: NHS Choices.

As the situation worsens the risk of people with ME/CFS who are not housebound coming into contact with someone who has coronavirus is now becoming real and significant – especially if you are still in contact with people outside the house and/or live in an area, such as some of the London boroughs, where there are a disproportionate number of cases occurring.

No part of the UK is immune from this infection and even where I live in a very rural part of Gloucestershire there are new cases being reported.

Viral infections are a very common factor in causing symptom exacerbation and relapse of ME/CFS – sometimes severe and prolonged. Everyone with ME/CFS must therefore be taking self-help measures that reduce the risk of both spreading infections and catching infections from other people – these are described in more detail in section E of this update.

Keep washing your hands regularly and whenever you touch public surfaces or have opened letters or parcels etc.

The key preventative measures remain exactly the same:

  • Staying at home wherever possible,
  • Keeping a safe (at least six feet (two metre)) distance from everyone else if you do go outside,
  • Thoroughly and regularly washing hands, fingers and wrists,
  • Avoiding infections on surfaces wherever possible,
  • Not touching your face,
  • Keeping well away from anyone who has any symptoms of an infection.

All these measures are set out in the detailed guidance below and we will continue to update our guidance at least on a weekly basis. 

UK Government Guidance:

Finally, there are all kinds of misleading and sometimes even dangerous advice and fake news appearing on the internet claiming that high dose vitamins and supplements are an effective way in reducing the risk.  

A family member is working for a Government department that is solely dealing with fake news and misinformation – so please take care when it comes to information passed on by even well-meaning friends and relatives.

All the information in this blog is based on what we know, and do not currently know, in the current situation. We will continue to keep you updated on a daily basis via our social media where possible.

CONTENTS

A. The Coronavirus (Covid-19) – What it is, testing, treatment, vaccination etc.
B. What are the symptoms of the coronavirus infection?
C. What should you do if you have a new onset of cold or flu-like symptoms?
D. Who is most at risk of catching this infection?
E. Why people with ME/CFS should qualify as being vulnerable.
F. Why people with ME/CFS are not considered extremely vulnerable.
G. How can you prevent yourself from getting infected? Can pets transmit the infection?
H. What contact can you still have with other people? Social mobility, distancing, self-isolation and shielding.
I. What help is there for carers?
J. Education and Employment.
K. Shopping, food and medicine delivery.
L. Foreign Travel.
M. Hospital and other medical appointments.
N. Further information.


A. The Coronavirus (Covid-19). 

It appears that this is a virus that has spread from animals (possibly bats or pangolins) to the human population in the Wuhan region of China back in November 2019 – where the main focus of infection originated. The first case was reported on 19 November. 

Significant numbers of cases were then increasingly reported in countries like Iran, Japan, South Korea and Singapore – where people from China had visited. Cases are now being reported throughout the UK and in almost all other parts of Europe – Italy, France and Spain in particular – initially being linked to foreign travel or contact with someone who has been abroad.  There are also very high numbers of cases in some parts of the USA – New York in particular.

  • We are now in a situation where a significant degree of person-to-person infection is occurring.
  • The virus is spread by tiny viral containing droplets – which arrive in the air through coughing, sneezing and just breathing. So, coughs and sneezes really do spread diseases!
  • The main time between contracting the infection and developing symptoms appears to be from 5 to 11 days with a range from a few days to up to 2 weeks – during which time an infected person will be passing on the virus, especially in the immediate period before symptoms appear, even though they do not have any symptoms.
  • Children, who may not have any symptoms because they make a good immune response, are an important potential source of infection.

A test for the virus – the antigen test – was developed very quickly. However, due to shortages of supply and the fact that the testing procedure is time consuming and it required taking health service staff away from other duties it was not as available as it ought to be – especially for NHS and other essential workers who need to know if they have the infection.  It appears that the availability will now change this week with a large increase in the numbers of tests being carried out.

A second test has been developed to show if someone has antibodies to a past infection and now has a degree of immunity and should be safe to carry on as normal.  This will help to confirm that people who test positive are now unlikely to develop a second infection and should be more widely available this week. Work is also going on to find a home testing kit.

At present, there is no drug treatment available for this infection – although hydroxychloroquine (which is used to treat malaria and some rheumatic diseases because it has immunomodulatory actions) and some of the current antiviral drugs that are used to treat HIV infection are being assessed. 

The latest development is the use of what is called convalescent plasma – where blood plasma from people who have been infected, recovered, and developed antibodies is given.

In our current state of knowledge there is no scientific evidence that any drug, vitamin or supplement will reduce the risk of catching this infection or reduce the severity.

Although rapid progress is being made in developing and testing a vaccine in both the UK and USA, this will require proper testing on human volunteers for efficacy and safety – so it won't be available till the end of the year at the earliest.

B. What are the symptoms?

Health professionals are on a very steep learning curve here as this is a completely new virus. As with most viral infections, there is a range of initial presentations, symptoms, severity and outcomes.

Most healthy people – probably around 80% – will experience a mild flu-like illness and possibly some chest symptoms, or no symptoms at all, and recover. Hospitals are, however, starting to see an increasing number of younger people, some with no underlying health conditions, with a severe infection.

Symptomatic cases normally start off over a very short period of time with a cluster of three symptoms:

Feeling unwell, having a Fever (with a thermometer defined temperature of 37.8C or above), and Fatigue are common initial symptoms whereas cold-like sniffles and sneezing appear less common. 

In a minority of cases the infection then passes to the lungs where it can cause a dry (unproductive) and persistent cough and, if more severe, shortness of breath.

This can then progress into a far more serious infection involving the lungs, which can quickly progress to pneumonia and even prove fatal.

A few cases are also now presenting with a gastrointestinal symptoms, including nausea and diarrhoea. There are also reports of symptoms involving loss of taste and smell – due to damage to the nerve cells for taste and smell in the throat and nose.

In uncomplicated cases it appears that most people are getting back to normal in 7 to 10 days. But there are others where fatigue, fevers or milder chest symptoms are persisting.

We are now receiving occasional reports about people having what sounds like a more persistent post-infection fatigue syndrome – which indicates that this infection will almost certainly be a trigger for new cases of ME/CFS.

At the moment the mortality rate in higher risk groups (see below) is around 1 to 3 in every 100 people who are taken ill – which makes it worse than flu, where the mortality rate is closer to 1 in every 1000.

C. What should you do if you have a new onset of cold or flu-like symptoms?

The current advice from the NHS is that anyone who develops a fever and dry cough must self-isolate immediately.

  • 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.
  • UK Govt. Guidance: Stay at home: Guidance for households with possible coronavirus infection.

If you feel more unwell you should contact NHS 111 (see below).

Do not go to your GP surgery or hospital. However, you may find that your GP is willing to offer a telephone or video consultation.

Home management for mild symptoms is the same as for any flu-like infection – paracetamol for pain, plenty of fluids and rest (very important). 

Please note that there is some emerging evidence to indicate that non-steroidal anti-inflammatory drugs like ibuprofen/Brufen can exacerbate the effect of this virus – so they should be avoided. More information can be found by visiting the NHS website:

If symptoms become more severe, especially difficulty with breathing, speak to NHS 111 or your GP.

Different to ME/CFS symptoms

Flu-like and nasal symptoms are obviously very common in ME/CFS. But the key differentiating features here are the relatively sudden development of the three Fs:

  • Feeling unwell,
  • Increased Fatigue,
  • Fever and a persistent dry cough.

D. Who is most at risk of catching this infection? What is the likely situation for people with ME/CFS?

Most of those who develop a more serious or fatal infection are elderly (i.e. over the age of 70) who are less able to mount a good immune defence or have a long-term health condition that makes them extremely vulnerable.

This is especially true for people with conditions relating to cancer or those that causes immune system depression or affect heart or lung function (e.g. brittle or unpredictable asthma, COPD, heart failure). Men are also more likely to be affected than women.

Children and young people, whose immune systems are much better at mounting a good defence against new infections, are generally avoiding symptoms, or coping well, and not developing serious complications. But there are now a few cases of young people, and children, developing a more severe illness.

The situation in pregnancy remains uncertain – which is why the new government recommendation to avoid contact with other people is erring on the side of caution.

Current research evidence indicates that ME/CFS involves a range of immune system problems, including immune system and cytokine activation, rather than immune system deficiency. How the immune system in ME/CFS reacts to this new infection remains uncertain – as does how people with ME/CFS will react to it.

So, we all need to err on the side of caution.

Viral infections are a very common factor in causing symptom exacerbation and relapse of ME/CFS – sometimes severe and prolonged. So if you do catch this infection, as with any infection, the after effects are likely to be more serious.

This is why taking steps to avoid catching coronavirus, or any other flu-like virus at this time of year, are very important.

People with an underlying health condition are considered vulnerable or at risk, such as people with ME/CFS, and should stringently practice social distancing measures.

E. Why people with ME/CFS should qualify as being vulnerable.

“We are advising those who are at increased risk of severe illness from coronavirus (COVID-19) to be particularly stringent in following social distancing measures.

“This group includes those who are:

  • aged 70 or older (regardless of medical conditions)
  • under 70 with an underlying health condition listed below (i.e. anyone instructed to get a flu jab as an adult each year on medical grounds):
  • e.g. chronic neurological conditions, such as Parkinson’s disease, motor neurone disease, multiple sclerosis (MS), a learning disability or cerebral palsy.”
  • Source: UK Govt. Guidance: Social Distancing.

ME/CFS is a neurological disease/underlying health condition that is likely to be exacerbated by coronavirus infection.

References in the Govt. guidance (above) are made to the NHS ‘flu vaccine list’ – which, because ME/CFS is not specifically mentioned, is being misinterpreted by some health professionals to mean that people with ME/CFS are not at increased risk.

The list of people who should receive a free NHS flu jab does not specify every single neurological condition that is eligible. It refers to chronic neurological disease and mentions a few examples:

“Those with chronic liver disease, immunosuppression and chronic neurological disease are at increased relative risk of mortality if they contract flu compared to the general population.”

The Government and Department of Health accept the WHO classification of ME/CFS as a neurological disease (in ICD10 G93:3). NHS England also makes it clear that M.E. is an ‘intermittent and unpredictable’ long-term neurological condition:

In addition, Dame Sally Davies, the former Chief Medical Officer, confirmed that people with ME/CFS should have a flu vaccine if they want one.

Therefore, we believe that ME/CFS does qualify as both an underlying and at-risk medical condition in relation to coronavirus infection and people with this diagnosis should be considered vulnerable.

F. Why people with ME/CFS are not considered extremely vulnerable.

On Sunday March 22,the Government issued further guidance for people in a new list covering those considered extremely vulnerable to the infection and the complications that might arise from it.

  • This is a group of people who will almost certainly develop serious life-threatening complications if they contract this infection.

People with an extremely vulnerable condition should be practising shielding measures and avoiding all contact with other people for 12 weeks from the date you receive your letter from NHS England (if you haven’t received a letter by 30 March you are advised to contact your GP surgery).

If applicable, you can register as an extremely vulnerable person by visiting this Government website. You will be entitled to additional help and support – including home delivery of shopping and medications if you need them.

Fludrocortisone

Please note that if you are taking a drug called fludrocortisone for Postural Orthostatic Tachycardia Syndrome (PoTS), which helps to increase blood volume, this drug can cause immune system depression.

One of the categories in the extremely vulnerable list is, “People on immunosuppression therapies sufficient to significantly increase risk of infection”. It could be worth speaking to your GP to see if they think given your personal situation, you are at increased risk of infection.

It also describes the practical help that people can request in relation to obtaining food and medicines – which will be co-ordinated by local hubs and supplied by local authorities and the army.

The food parcels will be free to start with. More details will be going out this week by text and letter to everyone who should be on this list giving information about how the scheme will operate.

  • Please note that ME/CFS is not included on the extremely vulnerable list. Only if you have another health condition that is on the list, will you qualify for additional help and support.

People considered to be ‘extremely vulnerable’ to the infection, are:

  • Solid organ transplant recipients
  • People with specific cancers:
    • People with cancer who are undergoing active chemotherapy or radical radiotherapy for lung cancer
    • People with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
    • People having immunotherapy or other continuing antibody treatments for cancer
    • People having other targeted cancer treatments which can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • People who have had bone marrow or stem cell transplants in the last 6 months, or who are still taking immunosuppression drugs
  • People with severe respiratory conditions including all cystic fibrosis, severe asthma and severe COPD.
  • People with rare diseases and inborn errors of metabolism that significantly increase the risk of infections (such as SCID, homozygous sickle cell).
  • People on immunosuppression therapies (e.g. systemic/oral steroids) sufficient to significantly increase risk of infection.
  • Women who are pregnant with significant heart disease, congenital or acquired

UK Govt. Guidance:

G. How can you protect yourself from getting infected? Can pets transmit the infection?

At the moment the view from the virologists is that every person who contracts coronavirus is then passing it on to 3 or more people – so this is an infectious/contagious virus when it comes to person to person spread.

As with flu viruses at this time of year, there are a number of simple practical precautions that will significantly reduce the chance of picking up this infection.

These should be adopted by everyone:  

  • Infection containing droplets from coughs and sneezes in an infected person stay in the air for a short time and then land on surfaces where they can remain infective for several hours, possibly even longer, and in this case possibly up to 72 hours.  The infection appears to survive longer on hard surfaces (i.e. metal, glass, plastic and cardboard) than soft surfaces like fabrics and clothing.
  • The first step involves avoidance. Steer clear of public places and public transport where people may be coughing and sneezing. The government guidance is to keep six feet (two metres) or more away from other people. However, in view of the emerging evidence on the spread of viral particles in the air that has just been published from a research group in America, my personal view is that six foot should be an absolute minimum and we should be aiming for a 12 foot gap where possible.
  • The second step involves washing your hands, fingers and wrists whenever you have been in contact with a surface that other people have been touching.
    Examples of high-risk objects and surfaces are public toilets, cash machines, keyboards, mobile phones, handrails, door handles, light switches, trays that used for security checks in buildings.
    Thorough hand, finger and wrist washing with soap and warm water for 30 seconds after contact with potentially infected surfaces is the best thing to do – if facilities are available.
  • Alcohol containing antiseptic/sterilising wipes and gels are also very useful if you are out and about. Alcohol dissolves the lipid/fatty coat around the virus and helps to inactivate it. The alcohol content of these wipes should be 62% or more. There has been a big demand for antiseptic wipes and gels, and they are now becoming difficult to find. The best time to shop appears to be first thing in the morning! Please note that antibacterial wipes and gels are not going to be effective.
  • DO NOT TOUCH YOUR FACE, MOUTH OR EYES IF YOUR HANDS ARE NOT CLEAN!
  • Cheap face masks may help to stop you spreading infections but are of no real value in stopping you catching one as the coronavirus particles are minute and can only be kept out of the mouth and nose and eyes (which are another route for infection) by the sort of mouth and eye covering masks used by health workers. More expensive ones used by health workers, if they have Department of Health approval, will have a protective effect.
  • People who are housebound should ask visitors with any sort of infective symptoms to stay away. Healthy visitors should be asked to first remove their shoes, then thoroughly wash their hands and possibly wear disposable gloves – especially if the visit involves close personal contact for nursing or social care purposes.  Visitors should also avoid touching surfaces, including the front door handle!.  
  • Opening the post and parcels: We are still learning a lot about this virus, but we do know that it can survive on surfaces for several hours and survival rates are much better on hard surfaces including cardboard.
    So, there is a possible risk of contamination from the post and parcels that arrive. In practical terms all the post should be opened at one time, possibly later in the day, and hands washed afterwards. People who are extra vulnerable should avoid handling the post.
  • If you have any sort of infection keep away from other people and sneeze into a tissue or handkerchief.
  • Finally, although there is no way of enhancing your immune system to prevent this infection, one important way in which the immune system can be weakened is disrupted sleep. So please do all you can to try and get a solid night’s sleep at the moment – although we of course recognise that this can be difficult for people with ME/CFS.

How to wash your hands:

How to safely clean your mobile phone:

Can pets transmit the infection?

We have received several queries relating to dogs and cats. The view from the experts, is that humans cannot catch the virus from pets and pets cannot catch the virus from humans.

However, this is an area of scientific uncertainty and to err on the side of caution you should avoid touching other people’s pets, and avoid your own pets licking you!

Everyone who is out and about should practice social distancing and keep 6 feet (2 metres) apart from one another.

H. What contact can you still have with other people? Social mobility, distancing, self-isolation and shielding

For people with ME/CFS who are not housebound, considering how to keep social mobility to an absolute minimum is vital, especially if you are elderly (i.e. over 70), or have another health condition that creates a significant risk – e.g. heart or lung disease.

Being out and about and in contact with people and with surfaces that may be contaminated with the virus is the most likely way of picking up the infection – so changes in what you do away from home are vital if you have to go out to carry on working, or to the shop.

The advice on social mobility is likely to tighten further as the number of cases rises and the government issues further advice or restrictions.

The degree to which people with ME/CFS who are mobile and continue to leave home on occasions, decide to socially isolate or distance will to some extent depend on:

  • where you live,
  • who else can take over your essential household activities,
  • your age (the over 70s need to give this very serious consideration),
  • whether you have any other serious health conditions involving the immune system or involvement of the lungs or heart, and,
  • to what extent you have family, work or education responsibilities.    

One of the few positives to emerge from this situation is that communities are coming together – certainly in rural areas.  

Here in rural Gloucestershire a group has been formed in our village to help vulnerable people who cannot get out and the community village shop is now organising home deliveries.  We are also supporting one vulnerable neighbour. So, it’s important to check out this sort of support – in addition to what the government is now organising.  More details in the section on food shopping.

For people with severe ME/CFS the guidance remains the same.  This largely relates to trying to make sure that any visitors to your home are infection free, that they remove shoes and wash their hands and wrists thoroughly with soap and water, and preferably use an alcohol-based sanitiser gel as well.  

Social distancing and self-isolation are already major issues for people with ME/CFS and restricting social interaction still further is going to be hard.

On a personal basis, I am now be doing all I can to stay at home. If I do go out I definitely avoid situations where close physical contact and the spread of infected droplets in the air might occur. In practical terms this means that I am doing all my work meetings by video conferencing and phone as are my colleagues in the charity.

I do, however, continue to take my dog out for a walk each day in the village – because mental well-being is also very important and close physical contact from a dog walk in a very rural area is almost non-existent. Provided you live in an area where it is possible to go outside and meet very few people, and keep a good safe distance if you do, then this is a very low risk activity.

In accordance with Government guidance my contact with friends and family, especially children, has now been reduced to zero. I am constantly reviewing what I’m doing on a day-to-day basis. And if there are further cases of infections being reported locally to where I live I will reduce my very limited outside mobility still further.

If you are in a position where you need to escalate your existing arrangements to social isolation – i.e. having no regular contact with other people, there is detailed government guidance on social isolation here:

UK Government Guidance:

I. What help is there for carers?

The subject of help for carers was recently discussed on MEA Facebook. We are waiting to hear from the Government specifically about measures to help the social care sector and in particular, people who rely on carers for their daily needs.

In the meantime, the Government has published some guidance that you might find helpful:

J. Education and Employment

With all schools having closed on Friday 20 March, but remaining open for children of essential employers, the previous dilemma about what to do with children who have ME/CFS has now been resolved.

However, thought will now have to be given as to what sort of allowances will need to be made for a child who has been off school due to ME/CFS and would have been taking crucial exams relating to further education later in the year. 

Everyone who can is now being urged to work from home, but some people are in jobs where this just isn’t possible and may find themselves ‘furloughed’ as a result. The situation may be more difficult if you are well enough to be doing your normal job and you decide that you do not want to add to the risk of catching an infection – especially if this involves using public transport, touching lots of surfaces that other people have touched, or regularly meeting people.  

The ME Association has produced a detailed blog on employment which contains all the recent Government measures to help employees and employers – as well as the self-employed – get through the coronavirus pandemic:

Under UK Health and Safety legislation, employers have a clear duty to make suitable modifications for employees who have health problems in a situation like this and the MEA has issued a statement which explains why having ME/CFS makes someone vulnerable in relation to coronavirus infection.  

If you are having problems with your employer or human resources department you can ask for input from the occupational health department. If you belong to a professional body or trade union they should have someone who can provide free legal advice. 

K. Shopping, food and medicine deliveries

Some people with ME/CFS are finding it very difficult to get groceries and medications.

Concerns about the delivery of food and medicine to people who are confined to their homes – the vulnerable and extremely vulnerable – have been repeatedly raised during this past week.  

The ME Association, along with our charity colleagues in Forward ME, have sent a letter to the Government and the main supermarkets, to express our deep concerns and requesting urgent action to help those most in need.

Some people are now able to access home delivery slots or click and collect slots via supermarkets online especially if they let the supermarket know they are vulnerable, are regular users of the service and pay monthly for a delivery option.

Most supermarkets are now opening specifically for vulnerable people and those that care or support them, during special times each week. Check supermarket websites for more information, but if you need someone to shop for you, these might offer a good option.

So, there are signs things might be improving, but for most people, home delivery and supermarket access remain a concern.

It’s worth noting that there are now a huge number of community volunteer groups being set up all around the country who can provide volunteers to do shopping, collect prescriptions etc. – we now have a very active one with over 100 volunteers in the Cotswold village where I live, for example.

Some local councils are also assisting with coordinating aid and some local shops who don’t normally deliver are now offering delivery.

L.  Foreign Travel

The situation here has changed very rapidly as new cases appear in large numbers in countries outside China and travel to almost all other countries outside the UK is becoming almost impossible – for good reason.

The Foreign Office is providing regular and specific updates on the situation regarding travel to and from all foreign countries.

Airports, planes and cruise ships are high-risk places for picking up infections. So, plans for any form of future foreign travel will to have to be put on hold and holidays abroad cancelled if departure was due in the next few months at least.

M. Hospital Appointments

Hospitals, surgeries and other medical premises have to be regarded as places of increased risk when it comes to infection – so are best avoided unless you really need to go there.

Routine hospital appointments, along with other types of medical appointments – including physiotherapy, chiropody etc. – and operations are also likely to cancelled or postponed as the situation worsens. The same situation should apply to private practitioners providing alternative and complementary therapies. 

If your appointment is for something that does not require a clinical examination the preferable option is to postpone the appointment or check to see if a telephone or video consultation could be arranged.  While GPs are moving swiftly to arrange video and telephone appointments the hospital bureaucracy and lack of technology makes this more difficult.

Most dentists are now only seeing emergency cases – although you may find that your normal dentist is still available to speak to on the phone and can prescribe over the phone if appropriate.

N. Further information

If you think there is any possibility that you may have this infection phone the NHS 111 telephone helpline (or use the NHS 111 online service). Self-isolate and do not go to your GP surgery or hospital.

  • Keep an eye out for updates from the UK Government. You can sign-up for email alerts.
  • A very useful source of new information is listening to the daily Downing Street Press Conference, which is carried live on BBC News 24 and Sky News – usually at 5.00pm.
  • Local volunteer services are providing practical assistance with shopping etc. for people who are confined to their homes. Contact your local council or local volunteer bureau or check your town/village/community website.

The ME Association website will continue to carry any important new Government announcements. Daily discussions on all aspects of coronavirus and ME/CFS are taking place on MEA Facebook, Twitter, and Instagram.

Important note:

This information is intended to be used as general guidance on coronavirus infection in relation to ME/CFS. If you require individual guidance or advice please consult your GP, who can take your personal situation into consideration.

Image credits: 123RF/maridav/KaterynaKon/JozefPolc 

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The ME Association: Website Terminology

CFS - Chronic Fatigue Syndrome
ME - Myalgic Encephalomyelitis or Encephalopathy
PVFS - Post-Viral Fatigue Syndrome

Long Covid - Post-Covid Fatigue Syndrome
PACS - Post-Acute Sequalae of Covid-19
PEM - Post-Exertional Malaise
RRF - The ME Association Ramsay Research Fund

DecodeME - The World's Largest Genetic Study
DHSC - Department of Health & Social Care
DWP - Department of Work & Pensions
JLA PSP - James Lind Alliance Priority Setting Partnership
MERC - ME Research Collaborative

MRC - Medical Research Council
NICE - National Institute for Health & Care Excellence
NIHR - National Institute for Health & Care Research
UKRI - UK Research and Innovation

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