Latest Free Leaflet Update: Covid-19 and ME/CFS by Dr Charles Shepherd

Dr Charles Shepherd, Hon. Medical Adviser, ME Association

We recently issued an update to our general leaflet on Covid-19 and ME/CFS and this is reproduced below.

It is part of a range of leaflets we have made freely available during this unprecedented crisis. We hope they will continue to provide help and reassurance and we will keep updating them as necessary.

You can download all the leaflets from this blog (the range can be found at the bottom of this page), or you will find them in the ME Association Website Shop.

Please Note:
ME Association Members will receive a complementary copy of this latest Covid-19 and ME/CFS leaflet with their Magazine – ME Essential – in July.

We will also be sending them details of the DecodeME genetics study which received significant funding from the MRC and NIHR recently.

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Coronavirus (COVID-19) and ME/CFS

Extracts:

Having reached the peak of infection in mid-April, the number of people being admitted to hospital with COVID-19, along with the number of deaths, is now gradually falling.

The latest leaflet – like all in our range (see below) – is available to download for free and can also be located in the website shop.

Hopefully, this trend will continue for the next few weeks and months until we reach a very low level of residual infection in the community. However, we are then going to enter a position where a low but hopefully manageable level of infection persists, possibly with periodic spikes in certain parts of the country.

This situation will almost certainly remain for the rest of 2020, and probably well into 2021 – until a vaccine becomes available, or the disease goes away, or largely disappears.

Although vaccine development research is proceeding at a very rapid rate in several centres, I don’t think we are going to see a safe and effective vaccine being made available for public use until 2021. And while the chances of success appear to be fairly good, there is no guarantee that we will have a vaccine.

The whole country is going to have to live with COVID-19 for the foreseeable future. And this means adjusting the way we all live according to the level of individual risk we face. We are all on a steep learning curve here and at a national policy level there is going to be quite a lot of trial and error before we get this right.

EASING THE LOCKDOWN

The second item of news, which follows on from the progressive fall in numbers, is the way in which a very cautious easing of Lockdown has been announced.

The various items of relaxation announced by the Prime Minister mean that changes in relation to exercise, education and employment are moving faster in England than elsewhere in the UK.

But none of these changes are going to have any significant affect on most people with ME/CFS – unless someone is planning to return to work or school.

As far as education in England is concerned, the key point here in relation to ME/CFS is that any return to school is not compulsory – the government has simply issued guidance on returning to school for certain groups of children.

My understanding is that nobody is going to be in trouble, or  even fined, if they choose to continue to keep their children at home. New measures being introduced for the September intake are likely to differ from the current situation.

For people with ME/CFS who may now be asked to return to work, or choose to return to work, this has to be on the basis of people being able to travel to work safely. And all aspects of the workplace must be safe in relation to hygiene and social distancing measures.

Employers have a clear duty under Health and Safety legislation to provide a safe working  environment and the Health and Safety Executive has opened a hotline for people to call if they are not happy about what an employer is proposing or doing: 0300 790 6787, Monday to Friday 8.30am to 10pm.

If you have concerns about working arrangements you should discuss them with your trade union or professional body representative. The ME Association has produced more detailed guidance on employment – see our COVID-19 Resources at the bottom of this page.

CONTROLLING THE SPREAD OF THE VIRUS

There are now consistent indications from the daily government statistics on new cases and deaths, and from the bed occupancy figures around the UK (which are falling) that we are well past the peak and approaching a situation where there is a very low level of infection out in the community.

As a result, there will continue to be a progressive easing of all lockdown measures – 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 Sunday 28th June 2020, there have been 9,195,132 tests, with 311,151 people testing positive. As of 5pm on 27 June, of those tested positive for coronavirus in the UK, across all settings, 43,550 have died.
  • Source: UK Government

Although the situation has been very serious in France, Germany, Italy and parts of the USA, the numbers of new cases are all now falling to very low levels.

People who are vulnerable, including anyone with ME/CFS, should try to stay at home except for:

  • Shopping for essential items such as food and medicines
  • A walk or some form of daily exercise if able
  • Medical appointments
  • Travel to work/school if you are able to do so
  • You should also ensure that you are at least six feet (2 metres) apart from anyone outside of your household.
  • Source: NHS Choices

Judging from feedback to the ME Association 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.

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

THE FULL RANGE OF ME/CFS AND COVID-19 LEAFLETS

The following leaflets and letter have been written by Dr Charles Shepherd (Hon. Medical Adviser) and Ann Innes (Welfare Rights Adviser).

They should provide you with essential information and links to external resources during this pandemic and national lockdown.

You can download each one (or all of them) by clicking the images below, or you will find them in the ME Association Website Shop.

The General LeafletVulnerable Status LetterCovid-19 and PVFS
Reducing Risk InfectionChanges to BenefitsEmployment

The ME Association

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