ME Association Weekly Update: Coronavirus and ME/CFS – New Leaflet and Letter | 17 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 Cv19 that was published on Tuesday 31st March.

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

  1. The Coronavirus (Cv-19) – What it is, testing, treatment, vaccine development etc.
  2. What are the symptoms of the coronavirus infection?
  3. What should you do if you have a new onset of cold or flu-like symptoms?
  4. Who is most at risk of catching this infection?
  5. Why people with ME/CFS should qualify as being vulnerable
  6. Why people with ME/CFS are not considered extremely vulnerable
  7. How can you prevent yourself from getting infected? Can pets transmit the infection?
  8. What contact can you still have with other people? Social mobility, distancing, self-isolation and shielding
  9. What help is there for carers?
  10. Education and Employment
  11. Shopping, food, and medicine delivery
  12. Foreign Travel
  13. Hospital and other medical appointments
  14. Further information

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: Wednesday, 15th April 2020

We have made this update (and all future updates) into a 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 arguing your case for additional support and help as a vulnerable person. We will also be adding another free leaflet about changes to benefits as soon as possible.

In this Update:

  • Controlling the spread of the virus
  • Hand and Respiratory Hygiene
  • Testing for the virus
  • What to do if you have symptoms suggestive of coronavirus infection
  • Shopping – Food and Medicines
  • ME Association working arrangements
  • 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
  • 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?
  • Hospital based referral services for ME/CFS
  • Further information

Leaflet Extract:
Controlling the spread of the virus

The number of new cases and deaths being reported here in the UK has continued to rise again over the past week.

However, there are definite signs that social distancing is starting to have a significant effect on the rate of increase with the number of hospital admissions and people occupying critical care beds showing signs of flattening.

If all goes to plan, and we are at, or nearing the peak, we could be looking at the numbers starting to fall towards the end of April. Once this turns into a progressive fall in numbers the Government will be looking at ways in which some of the restrictions could be relaxed or lifted.

  • As of Tuesday 14th April 2020, a total of 93,873 people have tested positive for the virus and 12,107 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

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).

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

Please support our vital work

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