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.


September Act4ME ask

This month we are really excited to have chosen an act suggested from the feedback we asked for in our ongoing survey by someone within the network. If you would like to send in a suggestion for a future act or just give feedback on the Act4ME network so far, we welcome you to fill out this short survey.

We are asking this month that you email/tweet the Rt Hon Sajid Javid MP, the Secretary of Health, and request that he meet with our CEO Sonya Chowdhury. With his position in the UK Parliament, a meeting with him would greatly help to highlight the need for more awareness and care for those with ME/CFS.

You can do this in your own words or by using the below template to ensure that Rt Hon Sajid Javid MP understands the message we are sending. We have also attached this into a word document to make it easy for all to access.


Previous Act4ME asks

August Act4ME ask

This month's ask is all about raising awareness and lobbying the National Institute of Clinical Excellence (NICE) who last week chose to delay publication of their new guidance.

Our first quick ask is that you sign the petition started by our friends at #MEAction UK. This quick action will help the petition reach a fantastic goal of 15,000 which will show NICE a clear a simple message.

If you have already signed the petition, or are up for doing a little more this month then we need your help. Thanks to our recent press briefings, we are hearing from more and more journalists interested in writing and broadcasting about M.E. and its impact. With the rise in Long Covid potentially leading to more M.E. diagnoses, and the spotlight on the delayed NICE guideline, it is more important than ever that the voices of people with M.E. and their carers are shared with the public, policy-makers and professionals.

If you would be willing to be a case study, either for our website, social media, print/online media, TV or radio, we would be grateful if you could click here. We will never pass your details or your story to a journalist without contacting you first.

July Act4ME ask

This month we asked you to contact Jonathan Ashworth MP, who is also the current Shadow Secretary for Health and Social Care. We would like to get in contact with him to request he meet with our CEO Sonya Chowdhury to discuss what the government can do to further support those with M.E. and those who care for people with ME as well.

You can do this in your own words or by using the below template to ensure that Mr Ashworth MP understands the message we are sending. 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.mistreatment that those with M.E. have experienced over decades and highlight the importance of good quality medical education.

June 2021

The first act we asked you to be a part of was contacting a reporter. Sunday 13 June saw the launch of the new channel GB News, and one of their journalists was asking for stories to cover. We asked you to ask her to report on the You can still 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.