Covid-19 & ME/CFS: Free Resources

During the unprecedented Covid-19/Coronavirus pandemic, we have ensured that people with ME/CFS – and those who continue to experience symptoms following infection – are kept informed of the latest guidance and related information.

All the leaflets and template letters relating to the Covid vaccination are free to download. We periodically review and update them when new information emerges or the situation regarding the national restrictions are changed.

Please note these leaflets are downloads. You can read them on-screen and save to your computer, phone or other device and can attach them to any email you might need to send. But you will need access to a printer if you wish them printed.

1. Letter Templates: Covid-19 & ME/CFS Vaccine Eligibility

We have produced these template letter to help you obtain (Group 6) access to the Covid vaccines. They contain all the relevant supporting information necessary to make your case for priority treatment.

If you are unsuccessful after approaching your GP, you can use the second letter to approach your local clinical commissioning group (England) or health board (Wales). For information about Scotland:

CMO Scotland issues new guidance re: Group 6 Covid Vaccination Eligibility | 12 March 2021

MEA Letter to UK General Practitioners (GPs) (v5) – 19 March 2021

MEA Letter to CCGs (England) & Health Boards (Wales) – 19 March 2021

2. Letter Templates: Covid-19 & ME/CFS Clinical Vulnerability

Clinically Vulnerable Adults

This letter can be used if you need to assert your right to be considered a clinically vulnerable person with ME/CFS during the Covid-19 restrictions. It has been updated with useful links to the latest information.

Clinically Vulnerable Students

This letter is for students and can be used if you need to assert your right to be considered a clinically vulnerable person with ME/CFS during the Covid-19 restrictions. It has been updated with useful links to the latest information.

3. Covid-19 & ME/CFS Guidance

a. Covid-19 & ME/CFS Vaccine Update – January 2021

Monday 4th January marked the start of the UK mass vaccination programme against COVID-19. The current aim is to vaccinate around 2 million people each week.

Over the next three months, priority is being given to key workers and people who are far more vulnerable to the effects of Covid-19 due to either age (i.e. being over 70) or having an underlying health condition.

This free leaflet will be updated as the situation continues to develop. In it we discuss:

  • Covid-19 vaccination priority and ME/CFS
  • The safety of the Covid vaccines in general
  • The safety of the Covid vaccines for people with ME/CFS
  • Vaccine administration practicalities
  • Making a decision whether to have the vaccine.

b. Covid-19 & ME/CFS Long Covid & Post-Viral Syndromes – November 2020

“At present, we have no firm indication as to how many people are experiencing persisting ill health following COVID-19 infection. However, if current estimates of around 10% of people who were home managed are accurate, this could translate into around 60,000 people with some form of post-infectious ill health that has persisted beyond a month.

  • Long-COVID, post-COVID fatigue and post-COVID fatigue syndrome are all being used as diagnostic labels.
  • Many have debilitating fatigue as a primary symptom.
  • Some have respiratory, heart and other symptoms that are the same, or very similar, to the acute infection – i.e. breathlessness, palpitations, intermittent fevers, loss of taste or smell.
  • Others have symptoms that are very similar to those seen in post-viral fatigue syndromes that can follow any infective illness and may precede ME/CFS.
  • Some have a combination of post viral fatigue syndrome symptoms and acute COVID-19 infection symptoms.
  • In cases where post-COVID syndrome symptoms have persisted for more than three months, and are consistent with those of ME/CFS, a diagnosis of post-COVID ME/CFS should be considered.

“The ME Association has longstanding experience in the management of post-viral debility, post-viral fatigue syndromes and post-infection ME/CFS. The information and guidance in this leaflet should therefore be of help to people in relation to the management of post-COVID fatigue and some aspects of post COVID syndromes where they overlap with ME/CFS symptomatology…”

c. Covid-19 & ME/CFS A Lockdown Summary – November 2020

Dr Charles Shepherd (Hon. Medical Adviser to the ME Association), summarises the main changes to daily life during the Covid-19 national lockdown and how they apply to people with M.E.

Contents include:

Controlling the spread of the virus, 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, What should people with ME/CFS do if they catch Covid-19?, the use of face masks.

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, ME Association working arrangements.

d Covid-19 & ME/CFS Reducing the Risk of Infection – November 2021

Dr Charles Shepherd (Hon. Medical Adviser to the ME Association) highlights those in the at-risk group and provides a ten-point guide to preventative measures that everyone should employ during the national lockdown and in the months ahead.

“People with M.E. are already in a vulnerable/high risk group when it comes to catching this infection – mainly because it is highly likely to cause an exacerbation of existing symptoms, or a more persisting relapse.

“The general risk from catching coronavirus also increases further if you have any of the factors below that are being identified as likely to make people more vulnerable to the infection.

“In particular: Age over 70 years, Male, Obesity, Black, Asian or minority ethnic background, Having other chronic medical conditions – e.g. coronary artery disease, diabetes, respiratory disease, Vitamin D deficiency.

“It’s important for everyone with M.E. to do all they can to reduce the risk of catching this infection. This means adopting a way of living that is based on individual circumstances and individual risk factors.”

e. Covid-19 & ME/CFS Employment Key Points – November 2020

Dr Charles Shepherd (Hon. Medical Adviser to the ME Association), discusses the measures in place to help people who are employed, who might still be furloughed, and those who are considering a return to work as the national lockdown restrictions are eased.

“We are receiving an increasing number of queries from people who have M.E., or are carers of people with M.E., who are able to work, but are confused by what is happening in the current crisis.

“I have therefore prepared a summary of basic factual information that needs to be taken into consideration with respect to employment that should help if you encounter any difficulties.

“Please note that we cannot offer legal advice on complex individual employment problems and disputes with employers. In this case you need to speak to your union or professional body representative – who should be able to provide expert legal advice if necessary. Or to an employment law solicitor…”

f. Covid-19 & ME/CFS Welfare Benefit Changes – April 2020

Ann Innes (Welfare Adviser to the ME Association), reviews the changes made to the benefits process during the Covid-19 national lockdown.

You might want to read this before making any applications or if you want to see what happens now when benefits are reviewed. Please also check the latest Government advice.

This free leaflet is comprised of two parts:

  • The first is about benefits for people tested positive for Covid-19 or have the symptoms or for those who share a household with someone in this situation.
  • The second is for people on Universal Credit or Employment and Support Allowance who have been treated as having limited capability for work but not limited capability for work-related activity (i.e. “work preparation group” or “limited capability for work” respectively).
  • Click here to download the leaflet.

The information provided in this leaflet was correct at the time of writing – April 15 – but please be aware that the regulations and guidance are changing daily. Check the Government website before making an application.

We will be producing an updated version of this leaflet as soon as we can.

The ME Association Telephone Helpline: ME Connect

Here to listen. Here to help.

We deal with each person individually, in a sensitive and professional manner. Every communication is kept completely confidential. ME Connect is staffed by a fully trained and supervised team of volunteers – most of whom have personal experience of M.E.

“It is really good that you offer this service, it is such a relief to speak to someone who understands.”

CALL ME CONNECT
0344 576 5326
365 days a year
10am-12noon, 2pm-4pm, 7pm-9pm

“The role of ME Connect is simple. It is there to support people with ME and their carers to make informed choices. It is there to listen to a caller and try to understand all the issues they are facing. Each year it does this for thousands of people.

“Of all that The ME Association does for people with ME it is our Telephone Helpline of which I am proudest. It is what a charity is all about; giving help to those who need it at a difficult time in their lives…”

Neil Riley, Chairman, ME Association

“Thank you so much for giving up your time to work on this Helpline. It is just so nice to speak to someone who really understands what I am going through.”

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.