Top Tweets for #ThereForMe
We're back for our first #ThereForME Update in a while!
Today we're sharing a roundup from ME Awareness Month (AKA May π
) - from World ME Day events, to research announcements and ME in the media.
Link in next post π
Description from @s4me_info weekly update:
An interview with Carolyn Leary, the newly appointed chair of Forward ME by Karen Hargrave, #ThereForME.
Carolyn Leary is carer for her daughter with ME/CFS. She describes making Forward ME more proactive and inclusive.
#MEcfs
π Our #ThereForME blog is back from hiatus!
In today's post, @KarenLHargrave interviews Carolyn Leary, the new chair of Forward ME (a coordinating body for ME orgs).
Carolyn explains how she got into ME advocacy, what you need to know about Forward ME and her future plans.
In a powerful interview #ThereForME co-founder, Karen Hargrave, speaks to @theipaper about the financial costs of caring for someone with very severe ME, the lack of help available & the stress this causes.
#MyalgicEncephalomyelitis #HealthEquality
https://t.co/V2INmNeTaQ
Since retiring from elite sport at the end of 2022, she has focused her efforts in the Long Covid and ME space β working at the charity Long Covid Support, as part of a social science research team at the University of Oxford, and in the #ThereForME team.
Former Team GB rower and #ThereForME team member, Oonagh Cousins, talks to Emma Barnett about her experience of living with ME following Long Covid
https://t.co/SIgLXUWszq
#ThereForME Interview with Forward ME Chair: What does the future hold for Forward ME? ** TW: Mentions suicide **
@ThereForME_UK have shared their interview with Carolyn Leary, the new chair of Forward ME (which the MEA are members of) regarding the new website and plans for the future.
"With other illnesses youβve got one big charity: one big voice and also one big way of getting funding. Weβve got a slightly more fragmented landscape, but there is a lot of common ground. Forward ME is about trying to find that and supporting it."
Read more: https://t.co/HIwm9laewn
Forward ME Website: https://t.co/E0vTMEEbCi
#MECFS #pwME #ForwardME #MyalgicE
Last week #ThereForME co-founder Karen caught up with Carolyn Leary, the newly appointed chair of Forward ME β a coordinating body for #ME organisations β to talk about her new role.
This is very encouraging.
https://t.co/29bJ0VQTaF
π Our #ThereForME blog is back from hiatus!
In today's post, @KarenLHargrave interviews Carolyn Leary, the new chair of Forward ME (a coordinating body for ME orgs).
Carolyn explains how she got into ME advocacy, what you need to know about Forward ME and her future plans.
@oonagh_cousins talking to Emma Barnett about her experience of #LongCovid #ME #ThereForME
https://t.co/orb2BJAyNp
This song doesn't get celebrated or talked about enough for me #ThereForMe is one of my favourite @MariahCarey songs written with @Diane_Warren and produced by Mariah & David Foster. It's a breath taking vocal π₯
https://t.co/ReDZ5RMiiX
This week weβre celebrating the work of other advocates, researchers and organisations.
Read this week's #ThereForME post to find out more about developments in research, Long Covid Awareness Day and a #ThereForME hiatus.
π in next post π
#ThereForMe @ThereForME_UK Guest post from Tessa Munt MP @tessamunt
https://t.co/f1b7PwZXJP
Screenshot from Science for ME weekly update
#MEcfs
We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.
In her blog, Tessa lays out the case for change and how to get involved.
Link in next post π
So grateful to Tessa Munt MP for doing such a powerful substack post on behalf of #ThereForME today. We need more MPs to sign up to the APPG for ME and plead our case strongly enough to get things done for #pwME despite opposition from the BPS lobby and all their servants.
We're delighted to share today's #ThereForME blog from friend of the campaign @tessamunt.
In her blog, Tessa lays out the case for change and how to get involved.
Link in next post π
Brilliant news!π
@SharonHodgsonMP knows how long people with ME have been waiting for funding for research and an NHS that's #ThereForME #myalgicencephalomyelitis #pwME
We look forward to working with @SharonHodgsonMP in her new role!
As a long-standing supporter of people with ME, weβre delighted to see Sharon taking on this important position π
@lammas_leaves @Dan_Wyke Thanks for this, sometimes we need to feel we can do something. Iβd also + (sorry if itβs there & I missed it) supporting/following the campaign #ThereforME - an injection of new approach & determination into the campaigning space that Iβve found incredibly refreshing & hopeful.
Today's #ThereForME blog takes stock progress in key areas six months on from the publication of the Final Delivery Plan for ME.
We look at progress in terms of:
β‘οΈ Improving care for severe and very severe ME
β‘οΈ Boosting education and training
β‘οΈ Accelerating research
In this week's #ThereForME blog our co-founder @KarenLHargrave writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding.
She explains why CHC funding for very severe ME is an issue that deserves attention.
π in next post π
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