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?...

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 ...

An interview with Katharine Cheston: exploring stigma, shame and illness

#MECFS #ChronicIllness #RecoveryStories

chroniclivingtherapy.com/katharine-ch...

"My name is Corina. I want to go home.” Clip • 7 Mins • 12 JUL • Brendan O'Connor Artist and writer, Corina Duyn, wrote a very powerful letter to Brendan about her experience living in care since the age of 59. She has lived with M.E. for more than 25 years. Corina’s book of collages “In Bed I Cut Words” is published by Creative Ireland, and distributed by the Irish Hospice Foundation. CorinaDuyn.com and corinaduyn.blogspot.com

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

This is terrific! I’ve never seen it framed in quite this way before. Very much resonated with me

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...

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/

Wooden public bench that has extended seating area so you can sit with your feet up

Found these in Trondheim, Norway

I've been doing this for a while. Needs must, eg attempting a meal out or attending a school concert. Took me a while to work out that taking a big cushion and a blanket make it a whole lot more comfortable!

If only there were public places to lie down would make going out so much more doable.

The Golden Girl's Dorothy confronts the Doctor who dismissed her illness. This is the experience of too many who experience chronic illness. Dorothy confronts Doctor who dismisses her chronic illness.

Oh wow. Never seen this clip before.

Thank you, Dorothy Zbornak &
#GoldenGirls episode writers.

#MECFS

youtu.be/kdXNNfLWkUI...

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

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.

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.

bsky.app/profile/livi...

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

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...

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

@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

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

bsky.app/profile/gree...

Could it be a data coding issue? Long Covid is often miscategorised as mental health, with treatments such as CBT being offered.
LC stats don’t match the figures in the disability stats:
"LC symptoms adversely affected the day-to-day activities of 1.5m people"
www.ons.gov.uk/peoplepopula...

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

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!

Very moving video
#FundThePlan

‘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...

Excellent long read about Long Covid. Still having devastating effects on large numbers of people.
www.theguardian.com/society/2025...

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.

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...

I don't think I have any specific advice, but just to say I have times when I feel like that too. Most times I just get on with it, but every now and then it hits me. I think it's OK to grieve once in a while for how much we've lost.
So sorry for what you are having to deal with, it sucks xx

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

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

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

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

Simple paracetamol actually helps me. When pain is flaring and stopping me sleeping it does take the edge off and I seem to get to sleep about half an hour or so after taking it 🤷‍♀️

Image with the Action for ME logo in the top left corner. The text in orange reads: *“We were disappointed to hear that the Department of Health and Social Care has ruled out allocating any funding alongside the final delivery plan. The delivery plan is an important step forwards for the ME community but without additional funding for much-needed and overdue research, its impact will be limited.”* Below the quote, a line separates it from the attribution: Sonya Chowdhury Chief Executive, Action for ME

@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