ME Association weekly update: coronavirus and ME/CFS | 7 April 2020

April 7, 2020

This update contains all the key information and guidance that has emerged since the last full MEA website summary of Cv19 was published on Tuesday 24th March.

The main MEA summary of Cv19 contains comprehensive information on all aspects of the infection as it applies to ME/CFS.  Individual sections cover the following topics:

A. What is the coronavirus? What tests are available? Is there any treatment? When will we have a vaccine?

B. What are the symptoms?

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. How can you prevent yourself from getting infected? Respiratory and hand hygiene. Can pets transmit the infection?

F. What contact can you still have with other people? Social mobility, distancing and isolation

G. What help is there for carers?

H. Education and Employment

I. Shopping, food and medicine delivery

J. Foreign Travel

K. Hospital and other medical appointments

L. MEA statement on neurological classification of ME/CFS and whether people with ME/CFS should be classified as being vulnerable in relation to coronavirus

M. Is ME/CFS included in the government’s ‘extremely vulnerable’ group?

N. Further information

Click HERE for link to main MEA summary

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 MEA telephone helpline – is open morning, afternoon and evening every day of the week if you want to speak to someone for information or support.  Click HERE for their contact details.

Dr Charles Shepherd, Hon Medical Adviser, ME Association

  1. Controlling the spread of the virus

The number of new cases being reported here in the UK has continued to rise quite steeply but there are some signs in the past few days that it could be slowing down.

  • As of Monday 6th April 2020, a total of 51,608 people have tested positive for the virus
  • As of Monday 6th April 2020, 5373 patients in the UK who tested positive for coronavirus (COVID-19) have died.
  • Source: UK Government.

The situation continues to remain very serious in Italy, Germany and Spain – although there are signs that the daily increase in numbers in these countries may have reached a peak and could be starting to fall. Several parts of the USA – New York in particular – are also 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 at least six feet (2 metres) apart from anyone outside of your household.
  • Source: NHS Choices.

Although stricter measures relating to social distancing have been brought in, action still needs to take place to deal with crowded public transport – especially on certain parts of the London tube network – and with employers who are not taking 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 still too early to know whether the new social distancing measures are being really effective but there are some very early signs that they could be. We should have a much better indication next week. The hope is that the number of new UK cases will then start to reach a plateau, possibly by the middle to end 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 the house to nearer twelve feet (four metres) wherever possible.

News item:

Academic paper in Journal of American Medical Association:

  1. Hand and Respiratory Hygiene

Two key points on reducing the risk of catching the virus remain exactly the same:

1  Avoid touching any surface that other people have been touching. Always wash your hands, fingers and wrists in soap and hot water for at least 20 seconds after touching any surfaces that could have the virus on them.  Soap and water is more effective than sanitisers.  This is because the virus is protected by a thin outer layer of fat and soap causes the fat layer to disintegrate and the virus then decays.

2  Do not touch your face, eyes or mouth with your fingers – especially when you have been touching surfaces that could be infected.

In addition to the very detailed guidance on hand and respiratory hygiene in section E of our main website summary,  here are two more tips on this vital aspect of preventing you catching Cv19:

Careful hand washing is, not surprisingly, leading to some people having dry cracked skin – which is another risk factor as the virus can hide in small skin cracks.  Use a good hand moisturizer after washing and drying hands to keep the skin hydrated.

As we explain in the main website summary, the virus can remain active on many different types of surface.  If you are still going supermarket shopping, one item that large numbers of people are handling are the trolley handles.  So it’s worth using an alcohol-based sanitizer to wipe the handle down before use.

    3.  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 to a government aim of 100,000 tests per day by the end of April.  

This should mean that health and other key workers will know if they have, or have had, the virus.  They will also know when they are not infective and can go back to work.  However, problems do still remain in finding an antibody test that is sufficiently reliable and is not producing false positive results.

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. 

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

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

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

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

If symptoms worsen, especially if you become short of breath, have rapid breathing, or are drowsy, you must get in contact again with either your GP or NHS 111 – as hospital admission may then be necessary.

New emergency hospitals are being prepared for serious cases all around the UK – including sites in Bristol, Harrogate, Glasgow and the use of the Excel Centre in London, where the first NHS Nightingale Hospital opened last week.

Finally, there are further reports to indicate that loss or taste of smell is an occasional symptoms of Cv19 and can be one of the initial signs of infection. And some people are, not surprisingly, losing several kgs of weight during the course of the active infection stage.

  1. MEA working arrangements

We issued a statement last week to provide information on all aspects of our work and the services we provide. Almost all of our key activities are continuing as normal – the main change being that we have now closed our office in Buckingham. 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. ME Connect – the MEA telephone helpline – remains operational, seven days a week, for information and support.

ME Association statement:

  1. Employment

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

This can be accessed here:

  1. 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, 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 you let the supermarket know you are vulnerable, or extremely vulnerable, or are a regular user 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.  If you need someone to shop for you, these might offer a good option.

So, there are signs that things might be improving.  However, 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.

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

  1. 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 in sections L (vulnerable/at risk groups) and M (extremely vulnerable/shielding groups) our main summaries, 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 another condition on the vulnerable list, or because of their age, should be practising 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 practicing 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.

  1. Research

Research that is being funded through the MEA Ramsay Research Fund is continuing where possible. Dr Shepherd has chaired a video conferencing meeting of the Biobank Steering Group and joined a Board meeting for the CMRC Research Collaborative.

The ME Biobank is continuing to operate at the Royal Free Hospital but no patient contact is being made in relation to new blood-sample collection. We are also processing funding for an exciting new research project – although it remains uncertain when this can start as it will involve patient recruitment.  

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 research activity relating to ME/CFS, especially any studies that require patient involvement.  

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

FDA announcement:

  1. 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 and a more realistic date might be Spring 2021.

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.

  1. Can pets 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!

There is now a report of tigers in Bronx Zoo in America having the infection – possibly from a zoo keeper.

Government guidance on pets:

  1. Possible forms of treatment  

As noted in section A of our full website summary, a number of experimental treatments are now being assessed and clinical trials into three possible drugs – including the antiviral drugs lopinavir and ritonavir that are used to treat HIV infection – are also taking place in UK hospitals. One of the other developments 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:

The Guardian: Coronavirus survivors’ blood plasma could be used to fight infection.

  1. What should people with ME/CFS do if they catch Cv19? What should previously healthy people do if they experience symptoms suggestive of post-infectious fatigue and/or ME/CFS?

Not surprisingly, we are now starting to receive occasional reports from people with ME/CFS who are making a slow recovery and/or experiencing a significant exacerbation of their ME/CFS symptoms after catching Cv19.  However, I am not currently aware of anyone with ME/CFS who has been admitted to hospital with severe respiratory problems.

In our current state of knowledge we don’t know with any certainty whether people with ME/CFS are more susceptible to catching Cv19 as a result of their immune system dysfunction, which includes low level immune-system activation, and whether as a result they are more vulnerable to developing the more respiratory serious complications.  What does seem highly likely is that people with ME/CFS will probably develop an exacerbation of symptoms, or a relapse of symptoms – because a new and significant infective episode is a common cause of exacerbation/relapse in ME/CFS.

I am also aware through personal and media reports of a few previously healthy people who are now experiencing what could be a post-infection fatigue syndrome following Cv19 infection.   This is not surprising given that fatigue is often a very prominent symptom of this infection and there are some good epidemiological studies (ie the Dubbo research that Ian Hickie et al carried out in Australia) to show that post-infection fatigue can affect around 10% or people in this sort of situation.

Dubbo reference:

As to how we might carry out some research to investigate what is happening to people after the acute infection is over, this was discussed at the recent ME Biobank Steering Group meeting  (as there are plenty of epidemiologists at the London School of Hygiene and Tropical Medicine – some of whom are looking at Cv19) and at the CMRC Board meeting last week – where Prof Chris Ponting is taking a special interest.  

One possible route here would be to make use of the baseline information  on people who already have clinical data and blood samples stored at the UK Biobank but did not have PVFS or ME/CFS at the time of enrolment and then go on to develop prolonged fatigue, or a fatigue syndrome following Cv19 infection. 

As far as management is concerned, the guidance is fairly similar when it comes to people with ME/CFS who experience an exacerbation or relapse, and previously healthy people who are not getting better after 7 to 10 days and have symptoms suggestive of a post viral fatigue syndrome.

The basics being >>

–  Old-fashioned convalescence involving very careful pacing of physical and mental activities

–  Attention to good nutrition – as some people with Cv19 are experiencing weight loss

– Good sleep management in relation to either unrefreshing sleep or increased sleep (hypersomnia)   

–  Returning to the GP if new symptoms develop, or a fever or chest symptoms continue, or get worse

Health and care professionals often carry on working when they are ill but in this case they should avoid any pressure to return to work until they feel that they are fully capable of doing so.

  1. Hospital-based referral services for ME/CFS

Hospital staff across a number of disciplines are now being retrained to work in other wards, including the care of Cv19 patients, and this applies to those working in the ME/CFS clinics.  So we are now starting to hear about ME/CFS referral services that are reducing their level of service and cancelling out patient appointments. So it looks as though these ME/CFS services will be operating with very limited capacity for at least the next three months. If you have an urgent query it is still worth contacting the service to see if there is someone available who can provide information or guidance over the phone.

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