A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m (You’ll be able to watch the live stream here). We want to encourage as many of our MPs as possible to attend and use this as an opportunity to raise the visibility of ME! Here’s how you can help.
1) Contact your MP (again!)
If you haven’t yet reached out to your MP yet to ask them to attend, our Contact Your MP tool makes it easier than ever..
If you reached out and they said they will come, do follow up with a thank you email. Let them know how much it means to you that they are taking this issue to heart.
If you reached out and you haven’t heard anything, CALL YOUR MP! Follow up phone calls can be very effective. (It’s great if MPs can both receive emails AND phone calls from constituents.) Click here to find your MP’s phone number and see this sample phone script.
Either way, let us know the response! Fill out this form to help us know which MPs are supportive of people with ME and which ones might need…a little more outreach!
2) Make noise on social media
Talk about the debate on Twitter and Facebook. Tag your MP (you can look up their social media handle here). Tell your friends to tune in! We’ve pasted some sample tweets below to get you started. Use the hashtags #MillionsMissing and #MEdebate. And don’t forget to follow @meactnetuk @meactnet @meactionscot for live tweets and updates before, during, and after Thursday’s debate.
Sample Tweets
.@[Your MP’s Twitter Handle]: There are on average an estimated 385 #PWME in each constituency, plus 2 carers or family members for each, meaning over 1150 of your voters are directly impacted by #MyalgicE”. To learn more attend the Thursday, 21st June, 1:30-4:30 p.m #MEdebate #MillionsMissing
.@[Your MP’s Twitter Handle]: Are you are attending the #MEdebate at Westminster Hall Thursday, 21st June, 1:30-4:30 p.m? 385 #PWME in your constituency are missing from their lives. Their carers, families and friends want them back! #MillionsMissing
“Weeks Missing”
Minister for Health and Care, Caroline Dinenage said of people with ME: “In the most serious cases, people can be bedbound for weeks at a time.” Tweet the below to help inform her of how severe ME can be. If you are able, post a selfie of yourself from your bed.
.@cj_dinenage said #PWME “can be bedbound for weeks at time.” No, Minister. Like @RoddamAnita, we can be bedbound for years, decades. I have been [Insert number] #WeeksMissing. #MillionsMissing #MEdebate
This idea was inspired by ME patient Anita Roddam (right), who wrote Dinenage this postcard from her bed.
You can also share this infographic:
