KarenG
@tenaciousmumma.bsky.social
Mum & carer of Sophia, bedbound with very severe ME. Constantly searching for answers and a way out of the abyss. #lymedisease #severeME #POTS #chronicpain #allodynia #vertigo
Reposted by KarenG
🚨 NEXT WEDNESDAY 19 NOVEMBER
We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.
If you have the energy - an email to your MP asking them to attend can go a long way 🙏
Template in next post👇
We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.
If you have the energy - an email to your MP asking them to attend can go a long way 🙏
Template in next post👇
November 13, 2025 at 9:48 AM
🚨 NEXT WEDNESDAY 19 NOVEMBER
We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.
If you have the energy - an email to your MP asking them to attend can go a long way 🙏
Template in next post👇
We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME.
If you have the energy - an email to your MP asking them to attend can go a long way 🙏
Template in next post👇
Reposted by KarenG
1/2
📢 APPG on ME
📆 Wed 10 Sept | ⏰ 4pm
The Group will open its enquiry into severe ME, hearing directly from people with lived experience.
👉 Ask your MP to attend: appgme.co.uk/contact-your...
#SevereME #MECFS
⬇️
📢 APPG on ME
📆 Wed 10 Sept | ⏰ 4pm
The Group will open its enquiry into severe ME, hearing directly from people with lived experience.
👉 Ask your MP to attend: appgme.co.uk/contact-your...
#SevereME #MECFS
⬇️
September 2, 2025 at 4:00 PM
1/2
📢 APPG on ME
📆 Wed 10 Sept | ⏰ 4pm
The Group will open its enquiry into severe ME, hearing directly from people with lived experience.
👉 Ask your MP to attend: appgme.co.uk/contact-your...
#SevereME #MECFS
⬇️
📢 APPG on ME
📆 Wed 10 Sept | ⏰ 4pm
The Group will open its enquiry into severe ME, hearing directly from people with lived experience.
👉 Ask your MP to attend: appgme.co.uk/contact-your...
#SevereME #MECFS
⬇️
Reposted by KarenG
More propaganda about the Lightning Process, this time in the form of a New Zealand marketing effort cosplaying as an academic paper. virology.ws/2025/03/02/t...
Trial By Error: New Hyped-Up Lightning Process Study from New Zealand | Virology Blog
By David Tuller, DrPH In January, the Journal of Family Medicine and Primary Care published a paper from New Zealand called “An audit of 12 cases of long CO ...
virology.ws
March 2, 2025 at 6:23 PM
More propaganda about the Lightning Process, this time in the form of a New Zealand marketing effort cosplaying as an academic paper. virology.ws/2025/03/02/t...
Reposted by KarenG
Today’s #ThereForME blog is from an anonymous healthcare worker
She shares her experiences of developing #ME following a Covid infection and ideas for what an NHS that’s #ThereForME would look like.
www.thereforme.uk/p/designing-...
She shares her experiences of developing #ME following a Covid infection and ideas for what an NHS that’s #ThereForME would look like.
www.thereforme.uk/p/designing-...
February 18, 2025 at 9:55 AM
Today’s #ThereForME blog is from an anonymous healthcare worker
She shares her experiences of developing #ME following a Covid infection and ideas for what an NHS that’s #ThereForME would look like.
www.thereforme.uk/p/designing-...
She shares her experiences of developing #ME following a Covid infection and ideas for what an NHS that’s #ThereForME would look like.
www.thereforme.uk/p/designing-...
Reposted by KarenG
Those, who so much insist that it’s all about not trying enough, have not tried as much in their entire lives, as a very severe #pwME tries not to deteriorate further and keep themselves alive. That bullshit narrative makes me so angry. Much respect to Karen and Sophia for sharing their story. 3/3
January 7, 2025 at 1:34 PM
Those, who so much insist that it’s all about not trying enough, have not tried as much in their entire lives, as a very severe #pwME tries not to deteriorate further and keep themselves alive. That bullshit narrative makes me so angry. Much respect to Karen and Sophia for sharing their story. 3/3
I’ve written about a tiny portion of Sophia’s daily existence to bring very severe ME out of the darkness and onto the radar of those in a position to instigate change 🙏
We’ve got a hard hitting #ThereForME substack out today from Karen Galpin, writing about caring for her daughter Sophia, who has very severe ME.
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
Karen describes their daily reality, responding to narratives that downplay the impact of #ME
www.thereforme.uk/p/this-is-no...
“This is not about not trying hard enough”
A glimpse into daily life with very severe ME
www.thereforme.uk
January 7, 2025 at 11:02 AM
I’ve written about a tiny portion of Sophia’s daily existence to bring very severe ME out of the darkness and onto the radar of those in a position to instigate change 🙏
Reposted by KarenG
Bluesky tip for newbies: Bluesky has no real algorithm. Likes here do nothing but show the poster that you enjoyed their content.
That kindness is always going to be appreciated by creators, but if you want to help to boost something here, you have to repost it so others see it. 🙂
That kindness is always going to be appreciated by creators, but if you want to help to boost something here, you have to repost it so others see it. 🙂
November 18, 2024 at 10:27 AM
Bluesky tip for newbies: Bluesky has no real algorithm. Likes here do nothing but show the poster that you enjoyed their content.
That kindness is always going to be appreciated by creators, but if you want to help to boost something here, you have to repost it so others see it. 🙂
That kindness is always going to be appreciated by creators, but if you want to help to boost something here, you have to repost it so others see it. 🙂
Reposted by KarenG
Another difficult visit to Soph's. Tried to describe how it feels to watch her suffering and being unable to hold her. And how we maintain closeness despite her extreme pain.
18/11/2024 When was the last time we kissed?
#pwme #mecfs #severeME
padpadpadpad.netlify.app/posts/caring...
18/11/2024 When was the last time we kissed?
#pwme #mecfs #severeME
padpadpadpad.netlify.app/posts/caring...
November 19, 2024 at 1:24 PM
Another difficult visit to Soph's. Tried to describe how it feels to watch her suffering and being unable to hold her. And how we maintain closeness despite her extreme pain.
18/11/2024 When was the last time we kissed?
#pwme #mecfs #severeME
padpadpadpad.netlify.app/posts/caring...
18/11/2024 When was the last time we kissed?
#pwme #mecfs #severeME
padpadpadpad.netlify.app/posts/caring...
Reposted by KarenG
Incredible stuff from @jacobcolliermp.bsky.social!
Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡
#ThereForME
Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡
#ThereForME
November 19, 2024 at 1:16 PM
Incredible stuff from @jacobcolliermp.bsky.social!
Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡
#ThereForME
Thanks for standing up so powerfully for your constituent and all those whose lives have been fundamentally changed by ME/Long Covid 🫡
#ThereForME
Reposted by KarenG
I found some time recently to sit down and write for our #ThereForMe blog.
In my day job I’ve spent a lot of time lately thinking about narratives. Some thoughts on why #ME and #LongCovid narratives matter - and how we can change them for the better.
www.thereforme.uk/p/from-yuppi...
In my day job I’ve spent a lot of time lately thinking about narratives. Some thoughts on why #ME and #LongCovid narratives matter - and how we can change them for the better.
www.thereforme.uk/p/from-yuppi...
From ‘yuppie flu' to ’anti-recovery activists’
Why narratives around ME and Long Covid matter – and how to change them
www.thereforme.uk
November 12, 2024 at 9:11 AM
I found some time recently to sit down and write for our #ThereForMe blog.
In my day job I’ve spent a lot of time lately thinking about narratives. Some thoughts on why #ME and #LongCovid narratives matter - and how we can change them for the better.
www.thereforme.uk/p/from-yuppi...
In my day job I’ve spent a lot of time lately thinking about narratives. Some thoughts on why #ME and #LongCovid narratives matter - and how we can change them for the better.
www.thereforme.uk/p/from-yuppi...
The pre-inquest review of Maeve Boothby-O’Neill’s death was yesterday. In today’s Times: “The NHS’s inability to care for seriously ill patients with severe cases of the debilitating disease ME requires urgent attention, a hospital chief told an inquest.” www.thetimes.co.uk/article/60aa...
Hospitals have no services for most severe ME cases, coroner told
Times journalist seeks answers after death of daughter aged 27
www.thetimes.co.uk
November 28, 2023 at 1:12 PM
The pre-inquest review of Maeve Boothby-O’Neill’s death was yesterday. In today’s Times: “The NHS’s inability to care for seriously ill patients with severe cases of the debilitating disease ME requires urgent attention, a hospital chief told an inquest.” www.thetimes.co.uk/article/60aa...
Fireworks. Great if you don’t have a severely ill loved one with sound and vibration sensitivity - and/or a dog 😡 #verysevereME
November 5, 2023 at 6:02 PM
Fireworks. Great if you don’t have a severely ill loved one with sound and vibration sensitivity - and/or a dog 😡 #verysevereME
Reposted by KarenG
Deadline for signing the (UK) petition for a requirement for masks in healthcare - deadline is tomorrow. Please sign and share.
petition.parliament.uk/petitions/63....
petition.parliament.uk/petitions/63....
Petition: Protect the NHS and All Healthcare: Require #MasksInHealthcare
We urge the Government to implement a policy requiring mask wearing in all healthcare settings including hospitals, clinics and GP practices for staff, visitors and patients. An FFP2 minimum should be...
petition.parliament.uk
October 11, 2023 at 12:14 PM
Deadline for signing the (UK) petition for a requirement for masks in healthcare - deadline is tomorrow. Please sign and share.
petition.parliament.uk/petitions/63....
petition.parliament.uk/petitions/63....