ME Association Weekly Update: Coronavirus and ME/CFS – Free Leaflet and Vulnerability Letter | 24 April 2020


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

This update contains all the key information and guidance that has emerged since the last full MEA website summary on Covid-19 that was published on Tuesday 31st March.

The MEA website summary contains comprehensive information on all aspects of Covid-19 including how the restrictions affect people with ME/CFS.

We will continue to keep you up to date on all 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.

Weekly Update: Thursday, 23rd April 2020

The Weekly update from the ME Association is now available as downloadable free leaflet.

It can be found in the website shop along with a ‘to whom it may concern’ letter (see below) which might be helpful when asserting your rights to be treated as a vulnerable person with ME/CFS.

We will also be adding another free leaflet about changes to benefits later today, and a further free leaflet that discusses post-viral fatigue and post-viral fatigue syndrome following coronavirus infection.

In this Update:

  • Controlling the spread of Covid-19
  • Hand and Respiratory Hygiene
  • Vaccine Development
  • Testing for the virus
  • What to do if you have symptoms suggestive of coronavirus infection
  • Shopping – Food and Medicines
  • Employment
  • Government Guidance: The vulnerable and extremely vulnerable
  • ME/CFS Research
  • Progress on the new NICE clinical guideline on ME/CFS
  • Can pets transmit the infection?
  • Possible forms of treatment for the virus
  • What should people with ME/CFS do if they catch Covid-19?
  • The Face Mask debate
  • Vitamin D Deficiency
  • What should previously healthy people do if they experience symptoms suggestive of post-infectious fatigue and/or ME/CFS?
  • Hospital based referral services for ME/CFS
  • ME Association working arrangements
  • Further information

Leaflet Extracts:
Controlling the spread of Covid-19

It looks as though the epidemic has now stabilised here in the UK.

There are consistent indications from the daily government statistics on new cases and deaths, and from the bed occupancy figures all-round the UK (which are falling) that we are at the peak. We may even be over the peak and starting to head downwards.

As a result, and if all goes to plan, there will probably be some form of easing of lockdown in two to three weeks’ time – certainly for some healthy groups in the population, and for certain occupations and businesses.

However, for people with ME/CFS, social distancing and isolation is going to have to remain for many months to come – until a vaccine is developed (probable), a successful antiviral treatment has been found (possible) or what is called herd immunity has occurred (i.e. a large number of people are now immune to the infection) and the virus can no longer spread effectively.

  • As of Thursday 23rd April 2020, a total of 138,078 people have tested positive for the virus and 18,738 people in the UK who tested positive for coronavirus (COVID-19) have died.

Source: UK Government

Although the situation continues to remain very serious in France, Germany, Italy, and Spain – there are signs that the daily increase in numbers in these countries has also reached a peak and is starting to fall. Whereas several parts of the USA – New York in particular – are still experiencing a serious increase in numbers.

Everyone must stay at home to help stop the spread of coronavirus. You should only leave home for one of four 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 four 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

Asserting your vulnerable status

Judging from feedback to the MEA Facebook page action is still needed to deal with employers who are not taking measures that help to ensure employees are not working closer than six feet (two metres) apart and are receiving appropriate protective equipment.

If you are having problems persuading a medical professional, employer, or supermarket that ME/CFS is a vulnerable illness and deserving of additional consideration you can make use of the MEA statement and the new ‘to whom it may concern letter’ on vulnerability (opposite).

Vaccine Development

Scientists in Oxford and Imperial College London have made really rapid progress in developing a vaccine and clinical trials are about to start.

The Oxford trial will take 1000 people and split them into two equal groups – one group being given the vaccine, the other group receiving another vaccine. They will then be followed up and asked to report if they develop any symptoms suggestive of Cv19 and tested for the virus.

If the Cv19 vaccine group are not catching the infection and the other group are this will be a good indicator of efficacy. The researchers will also want to make sure that the vaccine is safe.

All this will take time – at least six months. The results will then have to be analysed and manufacture of the vaccine started. So, a vaccine is not an immediate solution.

Testing for the virus

Following a very unsatisfactory initial approach to testing, it does now appear that testing for evidence of current viral infection (the antigen test) is going to be rapidly increased with a Government aim of performing 100,000 tests per day by the end of April.

This should mean that health and other key workers will know if they have the virus. They will also know when they are no longer infective and can go back to work. However, problems do remain in finding an antibody test that is sufficiently reliable for the purpose of identifying people who have had the infection in the past and one that 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.

Vitamin D deficiency

As many people are no longer going outside in the sunshine, or only doing so for short periods, the risk of vitamin D deficiency is increasing. So new advice is for everyone to take a daily 10 microgram vitamin D supplement.

People with ME/CFS are already at risk of vitamin D deficiency – so this is sound advice. Vitamin D is also essential for bone and muscle health. We have an MEA information leaflet covering vitamin D symptoms, prevention, and treatment of deficiency.

The Face Mask debate

There is a great deal of debate in the media about the value of wearing disposable or homemade face masks.

Most doctors agree that these sort of non-medical face masks can provide some protection when it comes to the person wearing the mask and the spread of any respiratory infection they may have.

But these sort of cheap masks provide very little protection to the person wearing the mask when it comes to prevention of viral droplets from someone else who is coughing or sneezing entering their mouth or nose.

They may even be counterproductive in that they become moist and trap viral particles during the day. People also end up touching their face to fiddle with the mask and don’t properly clean them before they are used again.

In current circumstances NHS staff need all the high-grade medical face and eye masks and visors that do provide a high level of personal protection from the virus. The situation may therefore change when these sort of masks can be purchased by the public.

Keeping up to date

If you are keen to keep up with the latest developments, it’s worth watching the daily Downing Street News Conference that takes place at 5pm each day and is broadcast live on the BBC news channel.

We will also continue to do our very best to keep you informed through MEA website and social media announcements.

It continues to be an incredibly busy time for your charity and we’re doing all we can to help address the many concerns that are reaching us.

Responses may be delayed, but we will get back to you as soon as we possibly can. Please take care. Stay at home and stay safe.

The ME Association

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