Campaigning for change
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Join our Act4ME activist network

Join our ActforME 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.

The first action will be sent out at the end of June 2021. 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.


June Act4ME ask

The first act we would like you to be a part of is contacting a reporter. This Sunday (13 June) sees the launch of the new channel GB News, and one of their journalists is asking for stories to cover. We’d like you to ask her to report on the mistreatment that those with M.E. have experienced over decades and highlight the importance of good quality medical education. You can do this in your own words by e-mailing the reporter, Michelle Dewsbury, directly at dewbs@gbnews.uk. If you prefer you can also tweet the reporter by responding to this tweet.

It would be great if you could e-mail her in your own words about why it is important people raise awareness of M.E. and include details about your own experience. We understand that for many people with M.E. they are unable to do this so we have added in some text below which you can copy and paste into an e-mail and then simply sign off with your name. We have also attached this into a word document to make it easy for all to access. If you have any suggestions on how we can make this ask, or future asks, more inclusive for severely affected people with M.E. then please contact us at policy@actionforme.org.uk.

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


Template e-mail

“Dear Michelle,

I am writing to highlight the decades of abuse and neglect that people with M.E. have faced due to a clear lack of understanding from Health and Social Care Professionals.

People with M.E. have faced disbelief from the very health professionals who should be supporting them. The condition affects more than 250,000 people in the UK and many more are being diagnosed due to the recent emergence of Long Covid. An example of the awful treatment and disbelief that has been experienced by people with M.E. can be found in this article by George Monbiot.

Your voice on GB News can help shine a light on the treatment of M.E. patients by health professionals and give a voice back to the thousands of people who struggle to get their voices heard.

Action for M.E. is a UK charity working to empower people with M.E. to fulfil their potential and secure the care and support they need, while working towards a greater understanding of the illness and ultimately a cure. Please contact Action for M.E. on 07496199474 or media@actionforme.org.uk and they can connect you with people with M.E. to interview and experts.”