ME Association Guidance: Coronavirus and ME/CFS by Dr Charles Shepherd | 16 March 2020

Monday, 16th March PM: UK Government Announcement

No sooner had we updated our guidance (see blog below), the UK Government announced new measures with regard to people with underlying health conditions and Social Distancing.

We strongly recommend that everyone with ME/CFS read this latest guidance and take appropriate action. You can find the details in a blog we published on Tuesday, 17th March, or on our social media platforms.
Monday, 16th March AM: ME Association

The situation has been deteriorating quite rapidly over the past week here in the UK. The number of confirmed cases (as at 15th March) now stands at 1372 with 35 deaths.

The WHO has also declared that Europe is now the epicentre of a very serious coronavirus pandemic (= an epidemic that involves several countries).

Disease modelling is suggesting that the numbers here in the UK will steadily grow from now on, probably for the next 6 to 8 weeks, before a plateau is reached, a degree of herd immunity starts to kick in (in theory), and the numbers will then (hopefully) start to steadily decline during the summer months.  

That’s the official government prediction at present, but not all the experts agree. If correct, it means that we are almost certainly going to be in a state of emergency, along with serious disruption to every aspect of normal life, for at least two months, possibly longer.

With the UK government now moving on from attempted containment of the virus to delaying the spread, we have also reached a new stage when it comes to how people with ME/CFS should be reducing the chances of catching this infection.

The key preventative measures remain exactly the same:

– avoiding infections on surfaces by keeping them clean, wherever possible,
– thoroughly washing hands and wrists after touching surfaces away from home,
– not touching your face,
– keeping well away from anyone who has any signs of an infection,
– keeping a safe distance from everyone else – even people you know!   

All these measures are set out in detail below, and we will continue to update this guidance at least on a weekly basis.

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

Update and Overview

I have now reached the conclusion that people with pre-existing health conditions that make them more vulnerable to lung complications (which may or may not be the case with ME/CFS – at this stage we just don’t know), or have a condition like ME/CFS where an infection such as this will almost certainly cause a relapse, or significant exacerbation of symptoms, need to be doing far more to protect themselves, and to socially distance themselves from other people, than official NHS guidance indicates.

Dr Charles Shepherd.

In particular, for those who are not housebound, this applies to social mobility and what you can do (and cannot do) if you decide to leave your home.

On a personal basis, I will now be doing all I can to stay at home and if I do go out then I will definitely avoid crowds or large gatherings where it is difficult to avoid close physical contact and the spread of infected droplets in the air.  

In practical terms this means that while I decided to go by public transport to take part in the CMRC conference in Bristol last week I will not now be travelling to meetings in Buckingham, London or Cambridge this week, and attending (where possible) all of my meetings by video conferencing.

I will, however, continue to take my dog out for a walk each day around the village (where close physical contact is almost non-existent), and go to the local farm shop. Contact with friends and family, especially children, will also be reduced. I will constantly review what I’m going to do on a day to day basis and if there are cases being reported locally to where I live I will reduce my social mobility still further.

The degree to which people with ME/CFS who are mobile, and can leave home, decide to socially isolate/distance themselves from others has to be an individual decision.  This will depend on where you live, who else can take over your essential household activities, your age (the over 60s 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 communities coming together – certainly in rural areas.  Here in rural Gloucestershire a group has been formed in the village to help vulnerable people who cannot get out and the community village shop is looking at how home deliveries could be organised. We are already supporting one vulnerable neighbour.

Read the latest UK Government advice about coronavirus (covid-19).

As far as education is concerned, I think there is now a strong case for allowing children and students with ME/CFS to be educated at home – where this is possible. The reason being that while coronavirus does not appear to be affecting many children or students, or causing a serious illness in children or students, a child or student with ME/CFS may well suffer a relapse if he/she catches this infection, and schools are ideal breeding grounds for infections.  Unfortunately, infected children and students could be wandering around with very little symptomatology.

Work is more difficult if you are well enough to be doing a normal job and you decide that you do not want to add to the risk of catching an infection – especially if this involves crowded public transport or meeting lots of people. 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. However, achieving a satisfactory modification may be easier said than done. And if you decide to remove yourself from work in order to reduce the risk of infection, it appears that this would not be a straightforward reason for the employer to pay sick pay – unless you have a note from your GP to support what you are doing.

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 wash their hands and wrists thoroughly with soap and water, and preferably use a sanitiser gel as well.

Social isolation is already a major issue for people with ME/CFS, but people in this group do now have to consider whether visits from friends and family need to be reduced or stopped for the time being and alternative arrangements put in place e.g. telephone calls instead of visits or greater use of social media and video meetings, arranging for home deliveries of shopping and supplies, etc.

Finally, there is all kinds of misleading and sometimes even dangerous advice appearing on the internet claiming that high dose vitamins and supplements are an effective way in reducing the risk. There is no scientific evidence that any drug, vitamin or supplement will reduce the risk of catching this infection or can be used to treat this infection.

ME Association Information and Guidance

The basic MEA information and guidance that was originally issued in February is now being updated every Monday to take account of the rapidly changing situation here in the UK and the fact that coronavirus infection has now spread to many other countries and there is now a serious pandemic affecting much of Europe.

There are currently (as at 15th March) 1372 confirmed cases here in the UK with 35 fatalities. The numbers are now rising quite rapidly, and this trend will continue over the coming days and weeks. 

At the moment the risk of someone with ME/CFS who is not housebound coming into contact with someone who has coronavirus is still fairly low. But this may soon move from low to moderate.  

Viral infections are a very common factor in causing symptom exacerbation and relapse in ME/CFS – sometimes severe and prolonged.

Everyone with ME/CFS must be taking simple self-help measures that reduce the risk of both spreading infections and catching infections from other people – these are described in more detail below.

And for people with ME/CFS who are not housebound, considering how to reduce your social mobility now needs to be given serious consideration.

This information below based on what we know, and do not currently know, in the current situation.

  Please vote in the MEA website survey about Coronavirus
We are currently running a survey about the coronavirus and asking if you are taking necessary precautions.
You will find it located on the homepage of this website. It appears about halfway down the page, just below the ME Biobank promotion.
 

Contents

1. What is coronavirus (covid-19)?

2. What are the symptoms?

3. Who is most at risk?

4. Prevention of spread: respiratory and hand hygiene

5. Social mobility, distancing and isolation

6. Education and Employment

7. Foreign Travel

8. What to do if you have new onset of cold or flu-like symptoms

9. Further Information

Cheap face masks may help to stop spreading infections but are of no real value in stopping you catching one as the viral particles are minute…

1. What is 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 December 2019 – where the main focus of infection originated. 

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 most other parts of Europe – Italy, France and Spain in particular – initially being linked to foreign travel, or contact with someone who has been abroad.

However, we are now in a situation where a significant degree of person to person infection is also starting to occur.

The virus is spread from person to person by tiny viral containing droplets that arrive in the air through coughing, sneezing and just breathing.  So, coughs and sneezes really do spread diseases!

The time between contracting the infection and developing symptoms appears to range from a few days to about 2 weeks – during which time an infected person will be passing on the virus even though they may not have any symptoms. Infectivity appears to be most significant during the early infective stage.

This is why people returning from China and some other countries, or who are at high risk of having the infection for other reasons, have been placed in self-isolation/quarantine for 14 days.

While testing for the presence of this virus is available and being deployed, there is no drug treatment yet available for the infection – although some of the current antiviral drugs that are used to treat HIV infection are being assessed.

And although rapid progress is being made in developing a vaccine, this will require proper testing on human volunteers for efficacy and safety – so it won’t be available for quite some time.

Finally, despite what some are claiming – especially on the internet – there is no scientific evidence that any drug, vitamin or supplement will reduce the risk of catching this infection.

2. What are the symptoms?

As with most viral infections, there is a range of upper and lower respiratory symptoms and severity. Most healthy people – probably around 80% – will experience cold or flu like symptoms, or no symptoms at all, and recover.

Symptomatic cases normally start off with a cluster of flu-like, sore throat or cold symptoms. Fever and malaise are common initial symptoms whereas cold-like sniffles appear less common.

In a minority of cases the infection then passes to the lungs where it can cause a dry (unproductive) cough and, if more severe, shortness of breath. This can then pass into a far more serious infection involving the lungs, which can quickly progress to pneumonia and even prove fatal.

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.

3. Who is most at risk?

Most of those who develop a more serious or fatal infection are elderly (i.e. over the age of 70) and are less able to mount a good immune defence, or have a long term health condition – especially one that causes immune system depression or one that causes heart or lung disease.

Children and young people, whose immune systems are much better at mounting a good defence against new infections, are generally coping well and not developing serious complications.

As ME/CFS involves immune system activation, rather than immune system deficiency, there is a theoretical reason to indicate that having ME/CFS may not place someone at being at increased risk of developing a severe infection.

But how the immune system 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. If you do catch this infection, as with any infection, the aftereffects 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.

4. Prevention of spread: respiratory and hand hygiene

At the moment the view from the virologists is that every person who contracts coronavirus is then passing it on to another 4 or 5 people – so it’s a fairly 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, and these should be adopted by everyone.  

Washing your hands thoroughly and limiting social contact remains the best preventative advice to help reduce the risk of infection with coronavirus.
  • Infection containing droplets from coughs and sneezes from 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 first step involves avoiding (where possible) crowded places – such as public transport – where people are coughing and sneezing. The general rule of thumb is to aim to keep 3 metres or more away from other people – if you can!
  • The second involves washing your hands when you have been in contact with a surface that lots of other people have been touching. In particular are things like public toilets, cash machines, keyboards, handrails, door handles, trays that are used for security checks in buildings and airports, and also shaking hands!
  • Thorough hand 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 are 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 content should be 62% or more.
  • There has been a big demand for antiseptic wipes and gels, and they are 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 spreading infections but are of no real value in stopping you catching one as the viral particles are minute and can only be kept out of the mouth, nose and eyes (which are another route for infection) by the sort of masks used by health workers.  More expensive ones, if they have Dept of Health approval, will have some effect.
  • People who are housebound should ask visitors with any sort of infective symptoms to stay away. Healthy visitors should be asked to thoroughly wash their hands and possibly wear disposable gloves – especially if the visit involves close personal contact for nursing or social care purposes.
  • Finally, if you have any sort of infection keep away from other people and sneeze into a tissue or handkerchief.

How to wash your hands:

5. Social mobility, distancing and isolation

For people with ME/CFS who are not housebound, considering how to reduce social mobility now needs to be considered, especially if you are elderly or have another health condition that create a significant risk – e.g. heart or lung disease.

Being out and about 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 do now need to be carefully considered.

To what extent this is put into practice has be a personal decision based on individual circumstances, but this could involve restricting out of home activities to essential things like shopping (although you could consider home-deliveries), medical appointments and avoiding unnecessary meetings and social events.

If you are still in work you will need to find out what will happen regarding your financial situation if you go off sick, or self-isolate, or decide to stay at home – see the next topic, below.

The advice on social mobility is likely to change as the number of cases rises and the government also issues further advice or restrictions on social mobility. Large public events and crowded pubic transport are obviously a significant source of infection and are best avoided unless you really have to go.

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

16th March Update (as above):

I have now reached the conclusion that people with pre-existing health conditions that make them more vulnerable to lung complications (which may or may not be the case with ME/CFS – at this stage we just don’t know), or have a condition like ME/CFS where an infection such as this will almost certainly cause a relapse, or significant exacerbation of symptoms, need to be doing far more to protect themselves, and to socially distance themselves from other people, than official NHS guidance indicates.

In particular, for those who are not housebound, this applies to social mobility and what you can do (and cannot do) if you decide to leave your home. On a personal basis, I will now be doing all I can to stay at home and if I do go out then I will definitely avoid crowds or large gatherings where it is difficult to avoid close physical contact and the spread of infected droplets in the air.  

In practical terms this means that while I decided to go by public transport to take part in the CMRC conference in Bristol last week I will not now be travelling to meetings in Buckingham, London or Cambridge this week, and attending (where possible) all of my meetings by video conferencing.

I will, however, continue to take my dog out for a walk each day around the village (where close physical contact is almost non-existent), and go to the local farm shop. Contact with friends and family, especially children, will also be reduced. I will constantly review what I’m going to do on a day to day basis and if there are cases being reported locally to where I live I will reduce my social mobility still further.

The degree to which people with ME/CFS who are mobile, and can leave home, decide to socially isolate/distance themselves from others has to be an individual decision.  This will depend on where you live, who else can take over your essential household activities, your age (the over 60s 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 communities coming together – certainly in rural areas.  Here in rural Gloucestershire a group has been formed in the village to help vulnerable people who cannot get out and the community village shop is looking at how home deliveries could be organised. We are already supporting one vulnerable neighbour.

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 wash their hands and wrists thoroughly with soap and water, and preferably use a sanitiser gel as well.

Social isolation is already a major issue for people with ME/CFS, but people in this group do now have to consider whether visits from friends and family need to be reduced or stopped for the time being and alternative arrangements put in place e.g. telephone calls instead of visits or greater use of social media and video meetings, arranging for home deliveries of shopping and supplies, etc.

6. Education and Employment

As far as education is concerned, I think there is now a strong case for allowing children and students with ME/CFS to be educated at home – where this is possible. 

The reasoning being that while coronavirus does not appear to be affecting many children or students, or causing a serious illness in children or students, a child or student with ME/CFS may well suffer a relapse if he/she catches this infection, and schools are ideal breeding grounds for infections. Unfortunately, infected children and students could be wandering around with very little symptomatology.

Work is 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 crowded public transport or meeting lots of people.

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.  

However, achieving a satisfactory modification may be easier said than done.  And, if you decide to remove yourself from work in order to reduce the risk of infection, it appears that this would not be a straightforward reason for the employer to pay sick pay – unless you have a note from your GP to support what you are doing.

7. Foreign Travel

The situation here has been changing very rapidly as new cases appear in large numbers in countries outside China and travel to most other countries outside the UK is becoming progressively restricted or practically impossible.

The Foreign Office is providing regular and specific updates on the situation regarding non essential to travel to all foreign countries. Unfortunately, airports, aeroplanes and cruise ships are also fairly high risk places for picking up infections.  

So, plans for any form of future foreign travel will to have to be put on hold.

8. What to do if you have new onset of cold or flu-like symptoms

The current advice from the NHS is that anyone who develops a fever and cough must self-isolate for a period of 7 days.  More information on what to do if you have to self-isolate van be found on the NHS website.

If you feel more unwell you should contact the NHS by phone: 111. 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.

Routine hospital appointments are likely to cancelled or postponed as the situation worsens. But you may again find that a telephone or video consultation could be arranged.

9. Further Information

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

UK Government and Department of Health updated information, especially in relation to foreign travel: Information for the public on the outbreak of coronavirus, including the current situation in the UK and information about the virus and its symptoms.

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 this information into consideration.

Image credits: 123RF/maridav/KaterynaKon/JozefPolc  

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