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MEA Newsletter: Free Resources, NICE Guidelines, Covid-19 & Long Covid

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

VIEW INFO

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

DOWNLOAD

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

DOWNLOAD

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.DOWNLOAD

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.DOWNLOAD

3. Covid-19 & ME/CFS Guidance

  • Covid-19 & ME/CFS Reducing the Risk of Infection – November 2020. People with ME/CFS are already in a vulnerable/high risk group when it comes to catching COVID-19 – mainly because it is highly likely to cause an exacerbation of existing symptoms, or a more persisting relapse. It’s important for everyone with ME/CFS 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. .DOWNLOAD
  • Covid-19 & ME/CFS Vaccine Update May 2021. Monday 4th January marked the start of the UK mass vaccination programme against COVID-19. In this free leaflet 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. DOWNLOAD
  • Long Covid & ME/CFS: Information & Management May 2021In April and November 2020, we provided information and guidance to the management of post-covid fatigue, post-Covid fatigue syndromes and the overlap between ME/CFS and Long Covid.This was based on how our knowledge and expertise about post-viral fatigue, post-viral fatigue syndromes and ME/CFS could be transferable to people who were not recovering from COVID-19, and where the symptoms were the same or very similar to ME/CFS.It has now been fully updated in this 40-page booklet to take account of developments in our understanding of the presentations and management of post-COVID-19 and how best to name the various clinical presentations. DOWNLOAD

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.”

New NICE Guideline for ME/CFS

We are counting down to the final publication of the new NICE Clinical Guideline for ME/CFS in August. It is an important document and will provide a framework for all health and social care in England (and is recognised in Wales, Scotland, and Northern Ireland).

The new guideline has the potential to improve the relationship between people with the condition and healthcare professionals, and could lead to more timely and accurate diagnoses and more appropriate and tailored energy management, for example.

The draft guideline is not perfect, but we believe it is a positive development and we remain cautiously optimistic that the changes it could bring will be of benefit to people to anyone who will need it.

The independent guideline committee which includes expert clinicians like Dr Charles Shepherd (Hon. Medical Adviser to the ME Association) and people with ME/CFS have been working together to produce the draft and final recommendations to NICE.

NICE then determine the content of the final guideline. The committee were tasked with reviewing all stakeholder feedback on the draft – including over 170 comments from the ME Association – in the early part of this year with the result that NICE decided to push final publication back until 18 August.

Some in the community are concerned that this delay could mean a dilution of the generally positive draft and are worried that graded exercise therapyor exercise recommendations might creep back into the final version.

While nobody will know for sure what NICE will ultimately decide, we have chosen to remain positive.

We think it would be very difficult for NICE to change their minds when the independent committee has reviewed all the relevant research evidence and made their recommendations, and when NICE chose to make the removal of GET a key part of their press release last November:NICE draft guidance addresses the continuing debate about the best approach to the diagnosis and management of ME/CFS | 10 November 2020
Covid Pandemic

We are hopefully coming to the end of lockdown restrictions and most people will now have had or at least be eligible for vaccinations if they choose to have them. But Covid-19 will remain with us for the foreseeable future and it seems likely that we will be offered annual boosters alongside the annual flu vaccination.

Many of you kindly responded to our request for Covid vaccine experiences. We heard from a large number of people who had no reaction, people who had a short-term reaction, and from those who were significantly affected over the medium term. We’ll continue to feature these stories on the website and social media.

We have made information about Covid-19 & ME/CFS as well as Long Covid freely available since the pandemic began, and we continue to keep it updated. This includes a new 40-page booklet on Long Covid Management.

We helped a great many people obtain priority vaccination in Group 6 – although this campaign proved to be both effective and frustrating as some doctors were unwilling to accept their patient’s vulnerability or use their own clinical judgment, but also because the JCVI would not include ME/CFS as an example of a neurological condition in their published guidance.ME Association Free Information: Covid-19 & ME/CFS & Long Covid

Long Covid

We continue to welcome people with Long Covid because we believe they can benefit from the experience we have in regard to symptom and illness management.

There are differences between some with Long Covid and ME/CFS but there are strong similarities as well. Long Covid is increasingly being viewed as another example of a post-viral fatigue syndrome, and viral infections have long been seen as the biggest trigger for ME/CFS.

Long Covid continues to grab headlines with more research funding being announced almost weekly, and, in England at least, the establishment of a Long Covid clinical network that now includes both adults and young people.

Existing NHS ME/CFS specialist services have, in some instances, opened their doors to Long Covid patients to help the estimated 2 million people who might now be seeking care and support.

We hope that people with ME/CFS will benefit from biomedical research into Long Covid, and we continue to push for ME/CFS patients to be included so we might better determine similarities, differences, common causal mechanisms, and, we hope, effective treatments.
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