Act4ME Network Update
Dear Act4ME Network,
We wanted to write and thank you for all your work and let you know that we have decided to stop Act4ME.
Your support has been invaluable over the last 2 years, helping us to widen our action and create change. Through our joint effort and the work with others in the community, we have secured a commitment for a National Delivery Plan for ME/CFS which was a core reason for us setting up Act4ME. While the Delivery Plan has yet to be launched, we have become active in beginning to implement some of its recommendations.
We are proud of the success that we have had which was possible because of your input. This has included:
- Listening to and sharing the NICE podcast
- Contacting your local, or chosen, MP to ask them to read about M.E.
- Sharing the new CPS module with healthcare professionals
- Signing up to and sharing DecodeME when it launched
- Joining us by sharing about World ME Day, M.E. awareness and Severe M.E. awareness days
All of these acts have not only spread awareness of M.E. but also ensured more people are educated further and that more action can be taken to support those with M.E.
A huge thank you to all of you that signed up and took part in Act4ME. Your help and support has been greatly appreciated.
Action for M.E.
This month we asked the network to read and understand our current media consultation. In short, this consultation aims to outline media guidelines around M.E. and combat the negative stereotypes and stigma sometimes created by the media. The guidelines contain key information about how to effectively describe M.E. in the media to help ensure society can understand and therefore support those with M.E. We asked them to read the guidelines and share them with others in the M.E. community.
For July's Act, we asked that they help us spread awareness for severe M.E. by creating posts on Facebook, Twitter or any socials they'd like. On the 8th of August it was Severe M.E. awareness day and Action for M.E.'s Twitter and Facebook will have lots of posts you can share or retweet, along with many individuals or other charities that will be posting. The aim of this act is to ensure that we spread the word about severe M.E. as far as we can.
Happy One Year to the Act4ME Network!
This month Act4ME turns one and we would like thank all of you for taking part and being signed up to the network. We would love for the network to grow so that as many people as possible could take part. If you have any family, friends or followers that may be interested, please share this sign up link with them.
For June’s Act, we would like to ask that you send a member of the House Of Lords this short message about the new School’s Bill they will soon be reviewing and how a particular amendment could ensure those with ME are supported better. You can find contact details for the Lords here, and we welcome you to email any Lord you wish to - be it one local to you or just one you've heard of before. As Liberal Democrats have requested this amendment, it may be best to email a Conservative or Labour Lord.
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.
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.
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.
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.
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.