Campaigning for change

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Act4ME network

Join our Act4ME Network and help drive change

People with M.E., carers and supporters are working together as part of the Act4ME Network to contribute to a real and lasting change for those living with M.E./CFS throughout the UK.

Our vision is a series of coordinated activities to raise awareness of M.E./CFS and put pressure on decision makers to prioritise the condition for increased funding and better awareness and understanding. These might include:

  • tweeting or writing to your MP, MSP or AM to highlight a key issue
  • asking a local decision-maker to add their support to a specific campaign
  • sharing your insight and experience to inform a debate or consultation.

How do I take part?

Sign up online here. Give us your name, contact details and location, and we will add you to the ActforME Network.

  • We are asking everyone in the network to commit to one action a month, which you will be notified about by email.
  • We may occasionally offer actions targeting specific regions of the UK.
  • We will seek feedback from each action to better understand the impact we can have and ensure actions are as successful as possible.
  • We will engage with the Act4ME Network to plan our asks and improve the work we do.

At first we will be running the network primarily online, and are aiming to open it up to those who may find it difficult to access a computer in the near future. We recognise that M.E. symptoms may mean not everyone can be involved and aim to be as inclusive and accessible as possible. We are happy to work with family/friends on behalf of others, if that's helpful.

Help us improve the Act4ME Network

We hope that you will support the Act4ME network further in improving and understanding how well it is working by filling out this short survey. Whether you have taken part in all acts so far or none, we would love to hear your thoughts. You can also use the link to submit ideas for future asks.


May Act4ME Ask

This month we would like to ask you to contact your MP to ask them to read and understand Sajid Javid's ministerial statement about ME. This statement is an incredible step towards building a better future for those with ME so ensuring that MPs have read it is of huge importance.

The most effective way of asking them to read the statement will be to tag your MP in a Facebook or Twitter post with the link to the statement. To do this, simply copy and paste the link, go to Facebook/Twitter and start a post by pasting the link in then tag your MP by typing their name.
If you prefer to use email, find your MPs email address on the parliamentary website then send this template email or a personally written email asking them to read the statement.


Previous Act4ME asks

April 2022

April has been a busy month and, as the Act4ME network has been running for almost a year, we are hoping to ask that instead of completing an Act this month, you complete our new feedback form.
The form should take no more than 10-15 minutes to complete and will give us the opportunity to take on your feedback and ideas to improve the future of Act4ME.

March 2022

This month we would like to ask you to contact your MP to ask them to attend and participate in the AGM of the All-Party Parliamentary Group for ME. This is an incredibly exciting re-start to the APPG and we hope that by having lots of MPs attend, ME will get on their radar. The AGM will be an opportunity for goals and aims to be set for the APPG, so it would be incredible if we got lots of MPs to attend.
To contact your MP, we have created a template letter which you can email to them, which asks them to attend the meeting.
To find out your MPs contact details, head to the Parliament website.
Or, if you prefer, you can share this graphic on social media to encourage MPs to join and others in the community to share.

February 2022

This month we would like to ask you to contact your MP to ask them to attend and participate in the Long Covid Debate in Parliament on the 24th February. This is a fast turn around but we hope that by contacting them close to the event, it will keep it fresh in their minds.
In the debate we are hoping that MPs can raise the connections between Long Covid and ME and discuss the need for biomedical research and research funding into LC and ME.
The most effective way of asking them to attend will be to tag your MP in a Facebook or Twitter post with the link to the debate. To do this, simply copy and paste the link, go to Facebook/Twitter and start a post by pasting the link in then tag your MP by typing their name.

January 2022

This month we would like to ask you to share a post about DecodeME - the largest DNA study into ME that launches this year. We need 25,000 people with ME to complete the study and you can help us reach as many people as possible.
It’s easy to take part from home. If you are interested in signing up, please head to the DecodeME website. (if you’re 16+, UK-based).
If you would like to share our pre-written message, please do so on Facebook or Twitter.
If you would instead like to create your own social media post, you can use our pre-made graphics.

Thank you again for being a part of the Act4ME Network. The more we work together the louder our voice will be.