iiinova — where your digital self keeps evolving

Frances Ryan @francesryan.bsky.social · 17/03/2025

Reposted by Fran H

“In 2025, long Covid is the public health crisis no one wants to talk about, taking a wrecking ball to people’s lives, the economy and NHS while those with power pretend there’s nothing to see.” 5 years on, I wrote about long Covid and national denial. www.theguardian.com/commentisfre...

theguardian.com

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

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Fran H @franhaddock.bsky.social · 14/03/2025

#IsItOk for @alastaircampbell2.bsky.social to complain about how many disabled people are not working on #TheLastLeg without questioning why? Have you heard of #LongCovid Alastair? And the pandemic which is an ongoing mass disabled event? And that there’s no cure and virtually zero support?

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Fran H @franhaddock.bsky.social · 21/02/2025

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

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Reposted by Fran H

Adam @abrokenbattery.bsky.social · 01/02/2025

Highlights from yesterday's ITV News Calendar segment on #LongCovid on the 5 year anniversary of the first case of Covid in the UK. Fran Haddock talks about how her life has been "decimated" by the condition.

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Fran H @franhaddock.bsky.social · 29/01/2025

😭😭😭❤️❤️❤️🫂🫂🫂

Will a day come when my friends aren’t so unbearably, unimaginably sick?

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My friends, they are so strong. Not in the way you see on TV. In the way it takes to survive every day with severe ME. With grit, resilience, humour, hope, acceptance, despair. Why should we have to be strong like this. Is each other all we have? Or are there others who can share the weight?

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I wish we could meet for cake, watch a film under the covers or dance under the trees. Instead we exchange messages of advice and support, or rambling rants, sometimes memories or photos, sometimes gifts carefully chosen with sacrificed energy, sometimes just a word.

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Promised things will get better but the reality is often so different. Those who do get better often want nothing to do with those still in the darkest depths, too traumatised by the memories or poisoned by ableist narratives.

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You never get used to it. Maybe it gets normalised to some extent because we’ve all been living like this for a good while now. Alone and together. Missing and forgotten.

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They live inside my phone. But they are real, scattered around the word in their own homes, living in bed just like me. Some don’t have the care they need to get through the day. Some of them are actively harmed rather than ‘just’ neglected. Some of them aren’t sure how they can continue.

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Every day I wake up, unrested and heavy, and open up my messages. My friends, they are so sick. They’re crashing, in pain, some of them can’t eat, some of them can’t see their phone, can’t stand, can’t think. So much suffering. Day after day after day.

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Fran H @franhaddock.bsky.social · 27/01/2025

I don’t want my friends to keep getting sicker 🖤❤️‍🩹🖤 Words on existing in the severe ME community, TW severe illness ⬇️

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Thank you!! 🦉🐦🐦‍⬛

Fran H @franhaddock.bsky.social · 27/01/2025

A few photos from our @rspb.bsky.social Big Garden Birdwatch yesterday. Before I had severe ME I was an avid environmentalist and nature enthusiast. The prior 2 years I’ve been too sick to look out of the window, or sit up, or look through binoculars, or open the curtain. So this was a joy

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Fran H @franhaddock.bsky.social · 20/01/2025

Please sign and share this petition for Line in Denmark, who is being threatened with involuntary psychiatric hospitalization if she doesn’t push through her very severe ME. Absolutely barbaric and could be life threatening www.change.org/p/prevent-fo... #SaveLine #SevereME

change.org

Sign the Petition

Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark

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Covid precaution wise- the visitors (my mum, sister and nephew) did a pooled pluslife test for covid, & had no symptoms of anything, we had 2 air filters & windows open & all wore FFP3 auras except Lachlan. Everyone hand san’d with hypochlorous acid, and I kept my mask on a while after they’d left

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I was so worried because I’m really not used to kids and obviously my body doesn’t let me be very loud or enthusiastic. But he didn’t mind. He also didn’t mind the masks at all. Gives me hope that was can build a good relationship despite my health and covid boundaries and him living so far away

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knew who we were (from FaceTime too), he was obsessed with Salem (the cat). And let me pick him up (which my arms also somehow let me do!!?) and look after him a little tiny bit. We managed to find loads of things he was interested in just in my bedroom (helped by my large collection of plushies 😆)

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Alexis Gilbert @alexisme.bsky.social · 15/01/2025

I was able to spend an hour or so with my 2 year old nephew yesterday for the first time in over a year (due to a combo of me being too sick, him have Covid last time and them living the other side of the UK). It was so sweet and magical. He’d been told all about Auntie Fran and Uncle Dan so

Fran a white woman with brown hair and a tie due hoody on, opens a bag with the 2 year old nephew who has blonde hair and a pink jumper

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Reposted by Fran H

Despite being severely unwell @katiamek.bsky.social spent her precious energy to speak out about this negligent treatment she’s been through in an effort to stop others experiencing the same. time.com/7206080/long...

A screenshot of the article with the text: Katiana Mekka, a 26-year-old Long COVID patient from Greece, says education is especially needed outside the U.S. Last fall, she says, she was involuntarily committed to a psychiatric ward and held for three days, until she passed a thorough screening test for mental-health disorders. The ordeal worsened her already severe illness, leaving her virtually unable to eat, move, or talk for days after.
"These illnesses are so mistreated and misdiagnosed," Mekka says, adding that so few doctors in Greece know about Long COVID that she has been forced to seek
virtual support from specialists in other countries. "The patients that I know, we all have so much will to live and so many
dreams. This is not a mental issue. We have severe symptoms."

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Reposted by Fran H

Frances Ryan @francesryan.bsky.social · 15/01/2025

The Guardian has spent a year with Darren - one of about 2 million people living with Covid in England and Scotland. Watch it in 7 minutes. V. important from my video colleagues. www.theguardian.com/society/vide...

theguardian.com

‘The pandemic isn’t over’: my year of long Covid – video

Darren Parkinson is one of about 2 million people living with long Covid in England and Scotland. The illness is having a detrimental impact on his life, stopping him from being the kind of active and...

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We will be launching a GFM soon but in the mean time we’re really looking for local support and people who can help reach out for local support (so Canadians ideally!)

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She is not able to live in a shelter due to care needs, severe allergies and a severe dissociative disorder which makes a change to an unknown location distressing and causes amnesia. What she really needs is care and support at home and more connections locally to find a way out of this situation

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She has not been able to receive any financial support or care from the government despite ongoing appeals and is also not able to afford basic survival needs, she has zero support locally and is therefore trapped in this relationship as she can’t survive alone

A friend who is multiply marginalised and has severe ME is trapped in a physically abusive relationship, she is reliant on her partner for care but is also deteriorating due to the physical abuse which has escalated recently

Urgent callout for local support (individual/group/mutual aid orgs) from ME allies in *Manitoba, Canada* - please repost. TW DV ⬇️

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to get this done at home and supported in the community. Ofc we don’t know 100% the NG tube would work but it’s worth trying before risking hospital. I’m putting together resources explaining how high risk and harmful hospital is for people with ME, so please send any over 4/

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But then what is the alternative? Hospital is not an option for her, the GP has said she wouldn’t get a side room in the dark & there would be day/weeks of tests. She simply wouldn’t survive this & refuses risking her life by going to hospital when there is a genuine option 3/

She wants to wait for the bloods but the main other reason stated is because of other people getting involved previously. So we are now in a catch 22 where other people advocating and getting involved could hinder her care (the GP has already previously threatened to sack her) 2/

Thanks so much to everyone who responded re my very severe friend in the Netherlands’. An update is that her dietician has supported the idea of her having an NG tube placed at home by a home care company. However the GP needs to support this and is so far declining to /1

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Does anyone know a way to get IV saline at home? She is not in a catchment area that private IV fluid clinics cover and the GP has so far refused /7 /end

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Qs- is there anyone in the Netherlands aware of a hospital/facility that could provide a feeding tube and meet requirements for severe ME? Does anyone have any other advice related to meds/interventions for the nausea and inability to keep food down that doesn’t need hospital? /6

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Consequences of going to hospital would be catastrophic. The GP had also previously threatened her with removing her as a patient. Is under the care of ME Dr in the Netherlands too who has prescribed very little /5

GP has done bloods initially, said if she goes to hospital she can’t guarantee a feeding tube or a dark room or that her v.severe requirements are met. She would need to do days of tests which would *not* be tolerated as the brief GP visit caused instant and severe crashing /4

Medication is currently levothryoxine, cetirizine, D3, zopiclone, lorazepam, and ondansteron. Has tried metoclopramide but caused Akathisia. Highly sensitive to meds, supplements, food/drink and has tried many other meds in the past which have caused side effects/not helped /3

Is 5ft 9 and only 51.2kg atm. Crashing severely from any stimulation. Will also wake up after sleeping for 30 mins shaking, drenched in sweat, blood glucose sometimes normal/high normal despite not eating. Feels like suffocating and hypoxia to the brain. Many severe symptoms /2

Fran H @franhaddock.bsky.social · 04/12/2024

Callout for advice for very severe pwME in the Netherlands (my best friend) pls RT. Main concern is not currently able to keep food down and is too nauseous to eat. Not kept down anything significant since Sunday 29th. Severe nausea continues even when not attempting to eat. 1/

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The @MEAssociation have not provided any adequate response to @alexisme.bsky.social’s open letter, therefore a collaborative of severe ME advocates have sent a follow up letter as well as creating a petition for Neil Riley to step down. Please sign and share: www.change.org/p/me-associa...

change.org

Sign the Petition

ME Association Chair Neil Riley must step down

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Fran H @franhaddock.bsky.social · 04/12/2024

That would be incredible for the next raffle we organise @vashetc.bsky.social!