Fran H

Community video for Severe ME awareness day, please share and tag politicians and public figures who need to see this!

All participants IG handles tagged at the end 💙💙

#SevereME #SevereMEAwarenessDay #MECFS #MillionsMissing #UnitedForME

🚨 I have 10 days before August rent is due, I need 832.33£ or $1,131.18

This is an emergency, so few people have donated recently, I’m at risk of homelessness, I could not survive that

Please boost/engage with this! 🚨

Rent PayPal: www.paypal.com/paypalme/Sav...

GFM: www.gofundme.com/f/save-nevra

Please support my friend Esam

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

“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...

#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?

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

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.

😭😭😭❤️❤️❤️🫂🫂🫂

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

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?

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.

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.

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.

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.

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.

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

Thank you!! 🦉🐦🐦‍⬛

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

Sign the Petition Prevent forced psychiatric hospitalisation of Very Severe ME patient in Denmark

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

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

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

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 😆)

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

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

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."

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...

‘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...

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...

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!)

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

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 ⬇️