Top Tweets for #Thereforme
The First Feature-Length Documentary on ME/CFS and Long COVID (Now Crowd... https://t.co/se6cvXgi23 via @YouTube #CFS #ME #illness #severeME @mecfsbiobank @PlzSolveCFS @MECFSNews @DecodeMEstudy @MECFSNews @Severe_ME @DafoeWhitney #ThereForME #
Ha ocurrido en varias ocasiones en la carrera de Mariah Carey que una canción que es un bombazo no se saca como single o, como es el caso de este #ThereForMe, sólo se edita como cara B de un single poco distribuido. Baladón de nº1. https://t.co/EQUVZK4AFN
Karen is a founding member of the #ThereForME initiative. Latest blog
https://t.co/Dci6P38zLw
Karen has also spoken of the “astronomical” cost of providing care in the absence of adequate NHS or local authority support.
https://t.co/beU5D4zFbf
In our work with #ThereForME, we come across many people with ME and Long Covid who face challenges accessing social care support.
Today's guest post shares stories from three authors from across the UK. Thank you to Cass, Marianne and our anonymous contributor 💙
So refreshing to see an advocacy org reflect on what they are achieving and responding appropriately, thank you #ThereForME
From #ThereForME on how we need to change our advocacy. So far decades of advocacy have not changed the lives of -#ME patients one bit. What now? @KarenLHargrave has some thoughts.
https://t.co/OlHX2yqZZR
From #ThereForME on how we need to change our advocacy. So far decades of advocacy have not changed the lives of -#ME patients one bit. What now? @KarenLHargrave has some thoughts.
https://t.co/OlHX2yqZZR
"The political landscape has changed, and if we want different outcomes, our advocacy has to evolve with it."
In today's update our co-founder @KarenLHargrave shares her reflections going into year 3 of #ThereForME.
Link in next post 👇
@CaroleBruce17 use those personal stories & direct contact from affected parties (pwME, caregivers) to secure research funding approval (for ex) from politicians
#ThereForME also has a good approach, focusing on new/better narratives & important practical steps forward
https://t.co/ExxFAiuuPK
We need a new, compelling narrative for ME - one that centres lived experience and the practical steps we can take.
A comms strategy within the old framing of ME (even if trying to rebut it) only reinforces the idea it’s valid. It isn’t. Let’s change it.
Karen is a founding member of the #ThereForME initiative @ThereForME_UK #MECFS
https://t.co/XG85axxjKJ
Full video (10 mins)
https://t.co/kvwKqwH1XS
Karen is a founding member of the #ThereForME initiative @ThereForME_UK #MECFS
https://t.co/XG85axxjKJ
Full video (10 mins)
https://t.co/kvwKqwH1XS
Great new research found that there are microstructural alterations in brain tissue of ME/CFS sufferers compared to general population. #MEcfs #pwME #MillionsMissing #ME #ThereForMe #LongCovid #MyalgicEncephalomyelitis #MEawareness #MEAwarenessHour
https://t.co/PRXw1LzmOe
Excellent Substack post from @GoreLloyd on the importance of correct numbers of those who have #ME #ThereForME So far we only have estimations, a true figure would make a huge difference for campaigning to the government and the medical profession.
You may have noticed there's a new PM in town!
Today's #ThereForME post from our co-founder @GoreLloyd outlines a problem his government will inherit when it comes to ME.
Houston, we have a data problem.
Link in next post 👇
A highly recommended read from my wonderful co-founder @GoreLloyd!
Emma unpacks the data problem we have with ME, why it matters and what we (#ThereForME included) should all be doing about it.
More here 👇
You may have noticed there's a new PM in town!
Today's #ThereForME post from our co-founder @GoreLloyd outlines a problem his government will inherit when it comes to ME.
Houston, we have a data problem.
Link in next post 👇
You may have noticed there's a new PM in town!
Today's #ThereForME post from our co-founder @GoreLloyd outlines a problem his government will inherit when it comes to ME.
Houston, we have a data problem.
Link in next post 👇
Today's #ThereForME update unpacks the latest from Westminster. We share what’s been happening, why it matters for our community, and our pick of recent research news.
Link in next post 👇
Today's #ThereForME guest blog is from Jemma Bella, a content creator whose posts about living with Long Covid have resonated with hundreds of thousands of followers.
Jemma reflects on how she began sharing her experience online & why her content resonated.
Link in next post 👇
We're back for our first #ThereForME Update in a while!
Today we're sharing a roundup from ME Awareness Month (AKA May 📅) - from World ME Day events, to research announcements and ME in the media.
Link in next post 👇
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
🙌 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 – 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.
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