Living Not Existing
@livingnexisting.bsky.social
Reaching out to others with #ME/CFS. Learning to live a new life after Sepsis
Pinned
Can't believe I have only just discovered this book. Must share!
Came across it via a book recommendation by Ann Patchett. She says she recommends it in real life all the time. "The medical system does not work equally for all people and this book is the truth." /1
Came across it via a book recommendation by Ann Patchett. She says she recommends it in real life all the time. "The medical system does not work equally for all people and this book is the truth." /1
Just finished this book. Some musings.
First to emphasise we all have different experiences with ME/CFS, these are mine and they don’t invalidate any one else’s.
What an incredible woman.
She ended up in many ways where I am. Acceptance for me is the key to happiness. Control what you can. /1
First to emphasise we all have different experiences with ME/CFS, these are mine and they don’t invalidate any one else’s.
What an incredible woman.
She ended up in many ways where I am. Acceptance for me is the key to happiness. Control what you can. /1
Reposted by Living Not Existing
Incredibly powerful watch about the government plan on ME from @binitakane.bsky.social and Sarah, whose daughter Maeve died from ME.
NHS urgently needs to commission specialist services for the 100,000s people living with this debilitating condition.
watch here
youtu.be/GZbSrdtiA9k?...
NHS urgently needs to commission specialist services for the 100,000s people living with this debilitating condition.
watch here
youtu.be/GZbSrdtiA9k?...
July 22, 2025 at 11:08 AM
Incredibly powerful watch about the government plan on ME from @binitakane.bsky.social and Sarah, whose daughter Maeve died from ME.
NHS urgently needs to commission specialist services for the 100,000s people living with this debilitating condition.
watch here
youtu.be/GZbSrdtiA9k?...
NHS urgently needs to commission specialist services for the 100,000s people living with this debilitating condition.
watch here
youtu.be/GZbSrdtiA9k?...
Reposted by Living Not Existing
An interview with Katharine Cheston: exploring stigma, shame and illness
#MECFS #ChronicIllness #RecoveryStories
chroniclivingtherapy.com/katharine-ch...
#MECFS #ChronicIllness #RecoveryStories
chroniclivingtherapy.com/katharine-ch...
Katharine Cheston: exploring stigma, shame and illness
Katharine Cheston Katharine Cheston is an academic researcher exploring shame and stigma through literary studies and medical sociology. She herself recovered from M.E. (after 7 years of illness) and ...
chroniclivingtherapy.com
July 14, 2025 at 9:14 AM
An interview with Katharine Cheston: exploring stigma, shame and illness
#MECFS #ChronicIllness #RecoveryStories
chroniclivingtherapy.com/katharine-ch...
#MECFS #ChronicIllness #RecoveryStories
chroniclivingtherapy.com/katharine-ch...
Reposted by Living Not Existing
8-minute interview on Irish national radio
www.rte.ie/radio/radio1...
While ME is discussed a bit, the focus is more on the issue of living in a care/nursing home
#MyalgicEncephalomyelitis #chronicillness #PwME #SevereME
www.rte.ie/radio/radio1...
While ME is discussed a bit, the focus is more on the issue of living in a care/nursing home
#MyalgicEncephalomyelitis #chronicillness #PwME #SevereME
July 13, 2025 at 6:12 PM
8-minute interview on Irish national radio
www.rte.ie/radio/radio1...
While ME is discussed a bit, the focus is more on the issue of living in a care/nursing home
#MyalgicEncephalomyelitis #chronicillness #PwME #SevereME
www.rte.ie/radio/radio1...
While ME is discussed a bit, the focus is more on the issue of living in a care/nursing home
#MyalgicEncephalomyelitis #chronicillness #PwME #SevereME
Reposted by Living Not Existing
Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has
www.bmj.com/content/389/...
1/
www.bmj.com/content/389/...
1/
Patients with severe ME/CFS need hope and expert multidisciplinary care
Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen
Myalgic...
www.bmj.com
May 15, 2025 at 8:34 AM
Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has
www.bmj.com/content/389/...
1/
www.bmj.com/content/389/...
1/
Reposted by Living Not Existing
Oh wow. Never seen this clip before.
Thank you, Dorothy Zbornak &
#GoldenGirls episode writers.
#MECFS
youtu.be/kdXNNfLWkUI...
Thank you, Dorothy Zbornak &
#GoldenGirls episode writers.
#MECFS
youtu.be/kdXNNfLWkUI...
Dorothy confronts Doctor who dismisses her chronic illness.
The Golden Girl's Dorothy confronts the Doctor who dismissed her illness.
This is the experience of too many who experience chronic illness.
youtu.be
April 27, 2025 at 9:04 AM
Oh wow. Never seen this clip before.
Thank you, Dorothy Zbornak &
#GoldenGirls episode writers.
#MECFS
youtu.be/kdXNNfLWkUI...
Thank you, Dorothy Zbornak &
#GoldenGirls episode writers.
#MECFS
youtu.be/kdXNNfLWkUI...
Reposted by Living Not Existing
NEW: There are 400,000 people diagnosed with ME/CFS in the UK, at least there would be if access to diagnosis was equal.
ME/CFS diagnosis however is a postcode lottery. It's much rarer in non-White communities and socioeconomically deprived areas, much worse than for other diseases
rdcu.be/eiEeu
ME/CFS diagnosis however is a postcode lottery. It's much rarer in non-White communities and socioeconomically deprived areas, much worse than for other diseases
rdcu.be/eiEeu
Unequal access to diagnosis of myalgic encephalomyelitis in England
rdcu.be
April 22, 2025 at 7:01 AM
NEW: There are 400,000 people diagnosed with ME/CFS in the UK, at least there would be if access to diagnosis was equal.
ME/CFS diagnosis however is a postcode lottery. It's much rarer in non-White communities and socioeconomically deprived areas, much worse than for other diseases
rdcu.be/eiEeu
ME/CFS diagnosis however is a postcode lottery. It's much rarer in non-White communities and socioeconomically deprived areas, much worse than for other diseases
rdcu.be/eiEeu
Reposted by Living Not Existing
Paul Garner is featured, alongside the Norwegian snake-oil sellers, as usual. If the media wants a professor who has recovered from Long Covid, I would be very happy to volunteer my story of an unambiguously-biomedical illness.
March 1, 2025 at 10:22 AM
Paul Garner is featured, alongside the Norwegian snake-oil sellers, as usual. If the media wants a professor who has recovered from Long Covid, I would be very happy to volunteer my story of an unambiguously-biomedical illness.
Reposted by Living Not Existing
Often when reading about long covid I feel the info is all the same and is aimed as an intro to those new to long covid. This actually gave some nuance and science to pacing and I have learnt a lot. Includes a practical advice.
March 17, 2025 at 10:47 PM
Often when reading about long covid I feel the info is all the same and is aimed as an intro to those new to long covid. This actually gave some nuance and science to pacing and I have learnt a lot. Includes a practical advice.
Thank you @francesryan.bsky.social I just don't understand why those in power @rthonwesstreeting.bsky.social are seemingly not able to join up the dots on Long Covid, from increases in numbers no longer able to work to children missing from school.
www.theguardian.com/commentisfre...
www.theguardian.com/commentisfre...
Long Covid is the pandemic’s dark shadow. Why does no one in power in Britain want to talk about it? | Frances Ryan
Five years after the first lockdown, millions of lives are still being ruined by this debilitating disease. You wouldn’t know it, says Guardian columnist Frances Ryan
www.theguardian.com
March 17, 2025 at 8:46 AM
Thank you @francesryan.bsky.social I just don't understand why those in power @rthonwesstreeting.bsky.social are seemingly not able to join up the dots on Long Covid, from increases in numbers no longer able to work to children missing from school.
www.theguardian.com/commentisfre...
www.theguardian.com/commentisfre...
Reposted by Living Not Existing
@iandunt.bsky.social it would mean the world if you might follow up on your piece to mention the hideous problem of Long Covid—tomorrow (15 Mar) is Long Covid awareness day www.longcovidawareness.life
International Long Covid Awareness
Long Covid Long Covid Awareness Day March 15th #LongCovid #LongCovidAwarenessDay COVID Viral persistence PASC. COVID19 Long Covid awareness ribbon colors grey/teal/black
www.longcovidawareness.life
March 14, 2025 at 1:00 PM
@iandunt.bsky.social it would mean the world if you might follow up on your piece to mention the hideous problem of Long Covid—tomorrow (15 Mar) is Long Covid awareness day www.longcovidawareness.life
Reposted by Living Not Existing
Where I don’t have agency even “post” pandemic is the long covid I got from an infection at work as a doctor
Omitting the long term impact the pandemic has had on so many, is a flaw in any of the recent posts
Omitting the long term impact the pandemic has had on so many, is a flaw in any of the recent posts
March 14, 2025 at 1:07 PM
Where I don’t have agency even “post” pandemic is the long covid I got from an infection at work as a doctor
Omitting the long term impact the pandemic has had on so many, is a flaw in any of the recent posts
Omitting the long term impact the pandemic has had on so many, is a flaw in any of the recent posts
Reposted by Living Not Existing
Dear
@rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social
We are Physios for ME and we urge you to #FundThePlan
Our video is just too long for BlueSky so you can see it here or read what we have to say in the thread below
www.facebook.com/watch/?v=166...
@thereforme.bsky.social
@rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social
We are Physios for ME and we urge you to #FundThePlan
Our video is just too long for BlueSky so you can see it here or read what we have to say in the thread below
www.facebook.com/watch/?v=166...
@thereforme.bsky.social
Redirecting...
www.facebook.com
March 2, 2025 at 11:36 AM
Dear
@rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social
We are Physios for ME and we urge you to #FundThePlan
Our video is just too long for BlueSky so you can see it here or read what we have to say in the thread below
www.facebook.com/watch/?v=166...
@thereforme.bsky.social
@rthonwesstreeting.bsky.social @ashleydaltonmp.bsky.social
We are Physios for ME and we urge you to #FundThePlan
Our video is just too long for BlueSky so you can see it here or read what we have to say in the thread below
www.facebook.com/watch/?v=166...
@thereforme.bsky.social
Reposted by Living Not Existing
People with ME so want to be better and contribute to society. An ambitious and well-resourced Delivery Plan could make such a difference at relatively small cost. Thank you for asking me to join you in the call to #FundThePlan!
So excited to be launching this video today!
A big thanks to everyone starring in it - including @binitakane.bsky.social @oonaghcousins.bsky.social @tessamunt.bsky.social 👏👏👏
A big thanks to everyone starring in it - including @binitakane.bsky.social @oonaghcousins.bsky.social @tessamunt.bsky.social 👏👏👏
We’ve been so moved seeing the #FundThePlan videos over the past few weeks.
Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign.
We’d love your help making some noise with it 🙏
Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign.
We’d love your help making some noise with it 🙏
March 12, 2025 at 9:41 AM
People with ME so want to be better and contribute to society. An ambitious and well-resourced Delivery Plan could make such a difference at relatively small cost. Thank you for asking me to join you in the call to #FundThePlan!
Reposted by Living Not Existing
Very moving video
#FundThePlan
#FundThePlan
We’ve been so moved seeing the #FundThePlan videos over the past few weeks.
Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign.
We’d love your help making some noise with it 🙏
Now, we want to get our call to #FundThePlan out far and wide. Here’s a little something we’ve put together for the campaign.
We’d love your help making some noise with it 🙏
March 12, 2025 at 11:09 PM
Very moving video
#FundThePlan
#FundThePlan
Reposted by Living Not Existing
Excellent long read about Long Covid. Still having devastating effects on large numbers of people.
www.theguardian.com/society/2025...
www.theguardian.com/society/2025...
‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten
Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic neve...
www.theguardian.com
March 2, 2025 at 9:16 AM
Excellent long read about Long Covid. Still having devastating effects on large numbers of people.
www.theguardian.com/society/2025...
www.theguardian.com/society/2025...
Refreshing article. Her experience of living with #ME simply interwoven with a general discussion of her life and her huge achievements.
"When she’s well enough, she and [her husband] go on outings to local pubs and coffee shops." Very relatable #pwME
www.nytimes.com/2024/10/25/b...
"When she’s well enough, she and [her husband] go on outings to local pubs and coffee shops." Very relatable #pwME
www.nytimes.com/2024/10/25/b...
Susanna Clarke Wrote a Hit Novel Set in a Magical Realm. Then She Disappeared. (Gift Article)
Twenty years after the publication of her fantasy debut, “Jonathan Strange and Mr. Norrell,” Clarke is returning to her richly imagined world of magical England.
www.nytimes.com
March 4, 2025 at 8:47 PM
Refreshing article. Her experience of living with #ME simply interwoven with a general discussion of her life and her huge achievements.
"When she’s well enough, she and [her husband] go on outings to local pubs and coffee shops." Very relatable #pwME
www.nytimes.com/2024/10/25/b...
"When she’s well enough, she and [her husband] go on outings to local pubs and coffee shops." Very relatable #pwME
www.nytimes.com/2024/10/25/b...
Reposted by Living Not Existing
I've had #ME for 38 years, nothing has changed in that time, no care, treatments or funding for biomedical research
It's an appalling record for everyone who's had a responsibly to implement change for #pwME over decades
#FundThePlan @ashleydaltonmp.bsky.social &
@rthonwesstreeting.bsky.social
It's an appalling record for everyone who's had a responsibly to implement change for #pwME over decades
#FundThePlan @ashleydaltonmp.bsky.social &
@rthonwesstreeting.bsky.social
February 25, 2025 at 2:24 PM
I've had #ME for 38 years, nothing has changed in that time, no care, treatments or funding for biomedical research
It's an appalling record for everyone who's had a responsibly to implement change for #pwME over decades
#FundThePlan @ashleydaltonmp.bsky.social &
@rthonwesstreeting.bsky.social
It's an appalling record for everyone who's had a responsibly to implement change for #pwME over decades
#FundThePlan @ashleydaltonmp.bsky.social &
@rthonwesstreeting.bsky.social
Reposted by Living Not Existing
30 yrs have been wasted on a psychological approach to #MECFS that led to stigma, abuse, and serious harm. It was abandoned by NICE due to bad science.
Wes Streeting & @ashleydaltonmp.bsky.social
The Delivery Plan is an opportunity to undo the damage and research treatments
#FundThePlan
Wes Streeting & @ashleydaltonmp.bsky.social
The Delivery Plan is an opportunity to undo the damage and research treatments
#FundThePlan
New Trailer for the #MECFS #GreatestMedicalScandal Explainer Video.
Includes clips from the full video that highlights the Stigma, Abuse, Bad Science and Harm.
Includes clips from the full video that highlights the Stigma, Abuse, Bad Science and Harm.
February 21, 2025 at 1:30 PM
30 yrs have been wasted on a psychological approach to #MECFS that led to stigma, abuse, and serious harm. It was abandoned by NICE due to bad science.
Wes Streeting & @ashleydaltonmp.bsky.social
The Delivery Plan is an opportunity to undo the damage and research treatments
#FundThePlan
Wes Streeting & @ashleydaltonmp.bsky.social
The Delivery Plan is an opportunity to undo the damage and research treatments
#FundThePlan
Reposted by Living Not Existing
A few days ago we heard the UK’s government delivery plan for ME will contain NO additional funding. How will this make a meaningful difference to #pwME?
So @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social , please listen our lived experiences, and #FundThePlan
@thereforme.bsky.social
So @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social , please listen our lived experiences, and #FundThePlan
@thereforme.bsky.social
February 21, 2025 at 2:51 PM
A few days ago we heard the UK’s government delivery plan for ME will contain NO additional funding. How will this make a meaningful difference to #pwME?
So @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social , please listen our lived experiences, and #FundThePlan
@thereforme.bsky.social
So @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social , please listen our lived experiences, and #FundThePlan
@thereforme.bsky.social
Reposted by Living Not Existing
Dear @wesstreeting.bsky.social & @ashleydaltonmp.bsky.social
I’m a carer to my husband James who has very severe ME.
He used to be a civil servant. Now he can’t get out of bed or have a conversation.
The Delivery Plan for ME is an opportunity to invest in our future.
#FundThePlan
I’m a carer to my husband James who has very severe ME.
He used to be a civil servant. Now he can’t get out of bed or have a conversation.
The Delivery Plan for ME is an opportunity to invest in our future.
#FundThePlan
February 21, 2025 at 9:24 AM
Dear @wesstreeting.bsky.social & @ashleydaltonmp.bsky.social
I’m a carer to my husband James who has very severe ME.
He used to be a civil servant. Now he can’t get out of bed or have a conversation.
The Delivery Plan for ME is an opportunity to invest in our future.
#FundThePlan
I’m a carer to my husband James who has very severe ME.
He used to be a civil servant. Now he can’t get out of bed or have a conversation.
The Delivery Plan for ME is an opportunity to invest in our future.
#FundThePlan
Reposted by Living Not Existing
@thetimes.com - Plan to help ME sufferers will not include extra funding
Quotes from our Chief Executive, Sonya, @karenlhargrave.bsky.social & her husband, James, @joplatt.bsky.social & @helenmorganlibdem.bsky.social
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
Quotes from our Chief Executive, Sonya, @karenlhargrave.bsky.social & her husband, James, @joplatt.bsky.social & @helenmorganlibdem.bsky.social
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
February 19, 2025 at 9:44 AM
@thetimes.com - Plan to help ME sufferers will not include extra funding
Quotes from our Chief Executive, Sonya, @karenlhargrave.bsky.social & her husband, James, @joplatt.bsky.social & @helenmorganlibdem.bsky.social
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
Quotes from our Chief Executive, Sonya, @karenlhargrave.bsky.social & her husband, James, @joplatt.bsky.social & @helenmorganlibdem.bsky.social
#pwME #MECFS #MyalgicE #MyalgicEncephalomyelitis
Reposted by Living Not Existing
@georgemonbiot.bsky.social #pwME really do need our allies to speak out about the government's announcement that the DHSC's Plan for ME will not included extra funding for research or care.
"Plan to help ME sufferers will not include extra funding"
archive.ph/Knjyl
"Plan to help ME sufferers will not include extra funding"
archive.ph/Knjyl
archive.ph
February 19, 2025 at 2:41 PM
@georgemonbiot.bsky.social #pwME really do need our allies to speak out about the government's announcement that the DHSC's Plan for ME will not included extra funding for research or care.
"Plan to help ME sufferers will not include extra funding"
archive.ph/Knjyl
"Plan to help ME sufferers will not include extra funding"
archive.ph/Knjyl
Reposted by Living Not Existing
Cure ME/CFS caps getting out there to help spread awareness + spark conversation 🔥
If you wanna, you can get yours here 👇
yewjk2-s6.myshopify.com
#MECFS #LongCovid
If you wanna, you can get yours here 👇
yewjk2-s6.myshopify.com
#MECFS #LongCovid
February 7, 2025 at 3:06 PM
Cure ME/CFS caps getting out there to help spread awareness + spark conversation 🔥
If you wanna, you can get yours here 👇
yewjk2-s6.myshopify.com
#MECFS #LongCovid
If you wanna, you can get yours here 👇
yewjk2-s6.myshopify.com
#MECFS #LongCovid
Reposted by Living Not Existing
It’s been a big Long Covid and Me advocacy week for me. Just a word to those suffering - there are some very promising conversations going on at high level through the FDP T&F group and beyond. I’m cautiously optimistic. It’ll be slow and difficult but I do feel tide is shifting in right direction 🤞🏽
February 12, 2025 at 7:52 PM
It’s been a big Long Covid and Me advocacy week for me. Just a word to those suffering - there are some very promising conversations going on at high level through the FDP T&F group and beyond. I’m cautiously optimistic. It’ll be slow and difficult but I do feel tide is shifting in right direction 🤞🏽