Our network of Parliamentary Champions are our 'go-to' individuals when engaging with Government and building support for our campaigns more broadly in Parliament and beyond.
Since the turn of the year, we have announced four more Champions to our network:
We are continuing to work to grow our network even further, ensuring that we have more MPs advocating for people affected by ME, and are working with our current Champions on a number of issues, including the Delivery Plan and the proposed welfare reforms.
We understand and share your serious concerns surrounding the proposed changes laid out in the Government’s recent Green Paper on reforms to the welfare benefits system.
Working in collaboration with Long Covid Support, ME Local Network (MELN), and #ThereForME, we developed a survey to gather the views and experiences of people affected by ME, which has already been completed by over 1,200 people.
The data will be analysed and used to provide a briefing to MPs, such as Jo Platt (who chairs both the APPG on ME and on Long Covid), to help amplify these concerns within Parliament itself. Data will also be used to help each organisation form their organisational response to the Green Paper consultation, which closes 30 May.
Further updates on this work will be shared across our social media channels, as they become available.
The first 2025 meeting of the APPG on ME took place on Wednesday 5 March, with the formal minutes available on the APPG’s website.
The group were joined by two officials from the Department of Health and Social Care, with whom they discussed the upcoming Delivery Plan on ME/CFS.
Alongside this detailed discussion surrounding the Delivery Plan and the lack of strategic funding to back the Plan, members approved the APPG's proposed workplan, which included additional suggestions from other charities and members of the ME community.
It was also agreed that two of the APPG of ME's meetings this year would happen alongside the APPG on Long Covid, which is also Chaired by Jo Platt MP. The first of these joint meetings takes place on Wednesday 14 May.
Invite your MP to attend!
Professionals at a school in Kent and at Cornwall Council have told us they felt more confident and better resourced to support their pupils and clients with ME thanks to training from Action for ME.
Around 100 education and support staff took part in two meetings in March and April. When asked what they found most useful, they said:
"Understanding how ME/CFS affects young people and the importance of pacing"
and
"Knowing that it is a fluctuating condition, that they will have good days and bad days; also that it is a spectrum and no two people will be alike."
We are using their feedback to develop and improve how we engage with professionals to raise awareness of ME and help them better support those living with the condition.
From January until the end of March:
"Very compassionate, understanding and lots of really helpful advice and resources I haven't been able to find anywhere else. I was lost, alone, and feeling very scared and vulnerable. Now I don't feel so alone and I know what next steps to take. Thank you!"
"It has been immensely helpful during a really stressful time. A lifeline when you feel like you’re drowning."
On 3-4 March, we were pleased host an event in collaboration with Saint George’s House Windsor, and thanks to the support of a private donor. This consultation brought together 27 international experts from academia, government, philanthropy and the media to explore opportunities and challenges in ME and long Covid research. Around half of the attendees had personal experience of ME and/or long Covid, and several other participants had not previously worked in this area, which helped to bring new ideas and collaboration opportunities.
There were presentations on recent research initiatives, followed by working group discussions. Some participants identified specific opportunities for future collaboration. There was also strong interest in continuing to work together as a group, while remaining open to new members and building on other global activities.
Overall, the event was a positive starting point to build consensus on research priorities and create new links. Action for ME is committed to maintaining this momentum and taking forward the next steps identified. More information about the event discussions will be published soon on our website.
At the end of last year, Action for ME announced a new partnership with the University of Edinburgh and Oxford Nanopore Technologies: SequenceME & long Covid. Subject to funding, SequenceME & long Covid would be the largest global ‘long-read’ genetics study looking at these chronic diseases. Using Oxford Nanopore’s next-generation technology, the project would provide richer and clearer insights into the genetics of ME and long Covid.
Other ongoing genetic studies, such as DecodeME, use a Genome-Wide Association approach, which identifies small changes in DNA and ‘common’ genetic variants. In contrast, long-read sequencing examines the entire genome, including rare variants and larger structural changes. This approach therefore holds the potential of improving our understanding of the causes of ME and long Covid and could help identify biomarkers and new treatment opportunities.
So far, a successful pilot study has sequenced ten samples from the DecodeME library using Oxford Nanopore technology. The results confirmed that the method is viable and scalable. The next phase would involve full-scale sequencing of up to 22,000 DNA samples from the DecodeME library and from a cohort of long Covid patients.
We are open to support, contacts, and suggestions for collaboration opportunities through national and international networks to support this project. If you have any suggestions on this, please get in touch by emailing our Research team.
More information is available, here.
Among our current research activities, we are a partner in the LOCOME research project, led by biotechnology company PrecisionLife and funded by UK Research and Innovation (UKRI). As part of the project, Action for ME coordinates Public and Patient Involvement (PPI), ensuring people with lived experience provide feedback on the research and how findings should be interpreted and shared.
The University of Edinburgh is also a partner in this project and the PrecisionLife team has been studying data collected as part of the DecodeME project. PrecisionLife’s innovative research method, called combinatorial analysis, looks at how combinations of genetic variations increase the risks for chronic diseases such as ME and long Covid.
Some of PrecisionLife’s key findings have included:
More information about PrecisionLife’s findings and project developments can be found, here.
We will be hosting a Genetics Centre of Excellence webinar on 6 June (2-3pm). As part of the event, the LOCOME project team and PPI partners will explain their activities in more detail and answer audience questions.
More information about how to register will be shared soon!
Our Healthcare Services offer individually tailored whole-person care, seeking to support you in whatever way is right for you as an individual physically, emotionally or spiritually.
Between January and March this year, they have already provided over 670 consultations to over 400 people affected by ME.
Michael, who used our Physiotherapy service said:
“I just wanted to say how deeply grateful I am for the help from the whole team at Action for ME.
My sessions with Kelly and Becky have been extremely helpful so far. Both are highly compassionate and knowledgeable about this complex condition. They have given me practical tools - physical and emotional - to help me manage and improve my wellbeing.
While my physical capacity is still very limited, my state of mind and outlook on life is in a much better place than when I first reached out.”
We are delighted to announce that, thanks to generous funding from The Prudence Trust, our free Young People’s Counselling service is now open to children and young people aged 11 - 18 (previously 13 - 18)!
Living with ME can be extremely challenging, particularly for children and young people. Our counsellors understand the impact ME has on people's lives and are here to provide a safe space, for young people to discuss their feelings, situation, life, and goals.
The service has already received 23 new referrals from young people with ME this year, with one young person saying:
"It's just really wonderful to have access to this service in such a straightforward way. In an often difficult and confusing world of fatigue illness where it can be really difficult to get any help at all, this was so easy."
We are very much looking forward to increasing marketing activity to promote this wonderful service and supporting even more children and young people affected by ME.
Blue Sunday is an online event, created by the wonderful Anna Redshaw to reduce the isolation often experienced by people with ME and to fundraise for ME charities.
Since the first Blue Sunday event in 2013, Anna has raised over £140,000 for ME charities across the world!
To take part this year on the 18th May you can…
You can do one, a few, or all of the above to show your support for the ME community!
Find out more about Blue Sunday and Anna Redshaw.
