Parliamentary Question: Support for ME and long Covid

18 November 2024

Tim Roca (Labour, Macclesfield) has asked a written question: To ask the Secretary of State for Health and Social Care, what steps he is taking to provide support for people with (a) long Covid, (b) chronic fatigue syndrome and (c) ME.Andrew Gwynne responded:

Since 2020, the National Health Service in England has invested significantly in supporting people with long COVID. This includes setting up specialist post-COVID services nationwide for adults, and children and young people, as well as investing in ensuring general practice teams are equipped to support people affected by the condition.

As of 1 April 2024, there are more than 90 adult post-COVID services across England, along with an additional ten children and young people’s hubs. These services assess people with long COVID and direct them into care pathways which provide appropriate support and treatment. General practitioners will assess patients that have COVID-19 symptoms lasting longer than four weeks and refer them into a long COVID service where appropriate. Referral should be via a single point of access, which is managed by clinician-led triage.

Over the last five years, the Government, through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC), has invested over £57 million in long COVID research, with almost £40 million of this through two specific research calls on long COVID. The NIHR specifically has invested £42.7 million towards research funding for long COVID. The projects funded aim to improve our understanding of the diagnosis and underlying mechanisms of the disease and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate clinical care. Further information on the research into long COVID commissioned through the NIHR is available at the following link:https://www.nihr.ac.uk/about-us/what-we-do/covid-19/long-COVID(opens in a new tab)

It is a priority for the Department to publish the final myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) delivery plan, and it is our intention to publish a consultation response summary later this autumn. We cannot comment on the exact content of the final delivery plan at this time, but it will be shaped by the consultation responses, along with continued close engagement with stakeholders, with three broad themes of attitudes and education, research and living with ME. We aim to publish in the winter of 2024/25.

The Department is also currently working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes.

Additionally, the Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. In 2020, the NIHR and the MRC came together to fund the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. Further details of the study are available at the following link:

www.decodeme.org.uk

You may also like...

Christmas Angels
Our Christmas Angels project is back! Now in it’s 15th year, our Christmas Angels project is a heartwarming way to spread festive...
Read more
Great South Run
Get ready to take on the Great South Run, one of the UK’s most iconic 10-mile events! Set in the beautiful coastal...
Read more
Action for ME joins Our Future Health as latest affiliate charity partner
We're excited to announce that we have joined as an affiliate charity partner of Our Future Health, the UK's largest health research...
Read more
Researchers say they have developed the world's first accurate blood test to diagnose ME/CFS
Researchers at the University of East Anglia say they have developed the world's first accurate blood test to diagnose ME. They examined...
Read more

Subscribe to our newsletter!

Join our newsletter mailing list for updates on our latest activities, news, and campaign information. Simply fill in the below form to receive regular updates from us.

This field is for validation purposes and should be left unchanged.
Name

Need to get in touch?

Call us on 0117 927 9551 or email infosupport@actionforme.org.uk to speak with a member of our Information & Support team. Or, find out how you can speak to another one of our friendly teams, such as our Fundraising or Marketing teams
Contact us
© 2025 Action for ME Charity registered in England and Wales: 1036419. Registered in Scotland: SC040452. Registered Companies House: 02906840
Fundraising Regulator badge with validation link

Supporting you

Getting the right information supports informed decision-making. If you’re newly diagnosed or looking for reliable information about ME, this is the section for you.

18 and under

Living with ME can be hard, especially for children and young people. If you're under the age of 18, this section is for you.

Help change lives

Your support helps us support even more people affected by ME through our Support and Healthcare Services
Donate now

Support us

If you'd like to donate or fundraiser for us, or volunteer to support our work, you'll find what you need here.

Help change lives

Help us drive positive change for the future through high-quality, biomedical research
Find out more

Research & Campaigns

Find out how we're creating positive change for the future through our research and campaigning work.

Receive our newsletter

Sign up to receive our quarterly newsletter, 'Keep me updated'
Subscribe now

News & events

Looking for recent updates on our work and from the wider field? You're in the right place.

Help change lives

Our Healthcare Services provide support for people living with ME, who can't access this support elsewhere.
Donate now

About us

In this section, you can find all the information you need on our organisation, why we do what we do, and how to get in touch with us.
linkedin facebook pinterest youtube rss twitter instagram facebook-blank rss-blank linkedin-blank pinterest youtube twitter instagram