It's M.E. Linda
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happyhoundhouse.bsky.social
It's M.E. Linda
@happyhoundhouse.bsky.social
450 followers 280 following 10 posts
2001 PVFS 'Recovered' to 90% by 2006. Sepsis 2013 resulted in M.E. / relapse. Brain/fitness not 'what it used to be'. Beloved Lisnakill Myles-Happy Hound himself 🌈
Posts Replies Media Videos
happyhoundhouse.bsky.social
#MECFS
#MyalgicEncephalomyelitis
Please sign all 3 petitions to help #pwME currently in NHS England hospitals

Savannah
Dill
Karen

Remembering Carla too - no news recently 😢
August 1, 2025 at 7:04 AM
Reposted by It's M.E. Linda
murtoz.bsky.social
www.change.org/p/save-savan...

www.change.org/p/the-nhs-mu...

www.change.org/p/save-karen...
Sign the Petition
Save Savannah Victora-May - Prevent Another ME/CFS Tragedy
www.change.org
July 31, 2025 at 1:40 PM
Reposted by It's M.E. Linda
me-cfs.bsky.social
This is Isla at age 8.

She died at age 18 with severe ME/CFS.

Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.
More, more, more You are meant to understand my illness but you all do is push, push, push. Nothing I do is ever good enough. I am proud and think you will be pleased with me as I have been going to school much more than before, but all you do is say I need to stay there longer, and if I feel ill I can’t [go] home early. I can’t get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night time, even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say I still have to get out of bed and walk even at the weekend after I have been at school all week. I don’t like coming to see you, it makes me worry what you are going to ask me to do next. My mum tells you I sometimes feel much worse but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next. I think you should care more about the children who come to see you and try to understand what they are going through. From Isla aged 8
July 31, 2025 at 12:40 PM
Reposted by It's M.E. Linda
drstevetaylor.bsky.social
Benefits

There has barely been any increase in the number of people claiming benefits if you take into account population growth, aging population, increase in morbidity & pension age rising so it include more people

Not the narrative you hear in media

obr.uk/wtr/welfare-...
June 30, 2025 at 9:38 AM
Reposted by It's M.E. Linda
labourlist.bsky.social
💷 "We cannot risk a rushed Bill taking money off disabled people."

@louisehaighmp.bsky.social and other Labour MPs on why they are backing an amendment to the welfare reform bill:

labourlist.org/2025/06/welf...
Welfare reform bill: Rebel Labour MPs on why they back reasoned amendment - LabourList
Here is why some Labour MPs say they are backing an amendment opposing the government's current welfare reform plan.
labourlist.org
June 24, 2025 at 7:54 AM
Reposted by It's M.E. Linda
trishgreenhalgh.bsky.social
Oh my goodness. Cochrane behaving badly. Worth doing the long read on this one. #medsky #healthpolicy #medtwitter #episky
January 24, 2025 at 9:22 AM
Reposted by It's M.E. Linda
trishgreenhalgh.bsky.social
If governments and organisations attended to indoor air quality, we’d be less reliant on masks to prevent transmission of respiratory infections.
January 26, 2025 at 6:49 AM
Reposted by It's M.E. Linda
katybrc.bsky.social
Please keep watching & sharing this 27min important film on
"The Greatest Medical Scandal" by @abrokenbattery.bsky.social
We need everyone to be watching this
#ME #MEcfs #pwME #LongCovid #MedSky
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
December 14, 2024 at 12:23 PM
Reposted by It's M.E. Linda
daniellebeckman.bsky.social
37 years ago, but could be in today's newspaper. We still know very little about post-viral syndromes. #COVID just made the number of cases explode, but they always existed. #MECFS #ME

Art by Kristine Paulsen
Cartoon showing M.E patients being victims of neglect and stigma for decades
January 7, 2025 at 6:38 PM
Reposted by It's M.E. Linda
lifeatthewindow.bsky.social
So grateful that with severe M.E. I still have a tiny bit of mobility to shuffle to the bathroom and kitchen.

I can’t make meals, but I can fetch drinks.

I cling to this mobility baseline. It’s all I’ve got in terms of independence.

I’m terrified of infections. The reality for #pwME

##MECFS
December 13, 2024 at 6:17 AM
Reposted by It's M.E. Linda
swiftsandswallows.bsky.social
My daughter wants to share 12 dinosaurs from our dinosaur 🦖 themed Christmas tree 🎄 in memory of her sister Isla who was fascinated by all things prehistoric.
Dinosaur 1 is a felt Triceratops.
#severeme #mecfs #dinosaurs #siblingloss
A felt Triceratops decorating a Christmas tree.
December 12, 2024 at 11:26 PM
Reposted by It's M.E. Linda
carlbovisnature.bsky.social
15,000 followers here now... never thought this would be possible on Bluesky! 😀
Thank you everyone! 🙏
Here's a recent Magpie in my garden to celebrate. 😁
#Birds 🪶🐦
Magpie perched on a bird feeder stand looking directly at the camera
December 12, 2024 at 11:41 PM
Reposted by It's M.E. Linda
kityates.bsky.social
You can read the summary of the first half of the paper - all about our establishment and organisation on my substack here:
open.substack.com/pub/kityates...
The inside track on Independent SAGE
A summary of the first part of our Nature Protocols paper dealing with the organisation and activities of Independent SAGE.
open.substack.com
December 13, 2024 at 7:44 AM
Reposted by It's M.E. Linda
kityates.bsky.social
Yesterday we published an article in @natureportfolio.bsky.social's @natprot.bsky.social about the experiences of @independentsage.bsky.social communicating science; from our organisation and establishment to the learning points we took from the process.
1/4
rdcu.be/d3n6s
Independent SAGE as an example of effective public dialogue on scientific research - Nature Protocols
The members of Independent SAGE reflect on their experience in setting up, developing and running a science communication platform and service to the public during the COVID-19 pandemic
www.nature.com
December 13, 2024 at 7:44 AM
Reposted by It's M.E. Linda
swastrosarah.bsky.social
🧵 #MaeveInquest update. A world first is promised.
NHS England's response states (where they were refusing to discuss commissioning of a specialist service for ME to prevent starvation, which is the best metaphor for #ME and #LongCovid during the inquest) NHS Executive is currently in talks with NHS
December 6, 2024 at 8:15 AM
Reposted by It's M.E. Linda
swastrosarah.bsky.social
Please share widely! This was the best an inquest could do. It took 4 years and the death of my only child to get here.
NHS England must keep to this promise; the simplest change to a long established narrative that killed Maeve and threatens every other person with #ME.
🙏 @gwynnemp.bsky.social
swastrosarah.bsky.social sarah boothby @swastrosarah.bsky.social · Dec 6
🧵 #MaeveInquest update. A world first is promised.
NHS England's response states (where they were refusing to discuss commissioning of a specialist service for ME to prevent starvation, which is the best metaphor for #ME and #LongCovid during the inquest) NHS Executive is currently in talks with NHS
December 6, 2024 at 8:20 AM
Reposted by It's M.E. Linda
oliverscampaign.bsky.social
#Oliverscampaign
Today at 7pm it is #WorldCandleDay where people light a candle for our children in Heaven.
If you light a candle this evening please give a thought for Oliver x
December 8, 2024 at 11:30 AM
Reposted by It's M.E. Linda
shaunlintern.bsky.social
Every day last week I attended the inquest into the death of 30-year-old Laura Higginson. It has taken her husband Antony 7.5 years, 4 coroners & £80k to expose how she was repeatedly overdosed with paracetamol by NHS staff.

The inquest was jaw dropping.

Read: www.thetimes.com/article/22ec...
I’ve spent 7 years convincing the NHS paracetamol killed my wife
An army veteran who says his six-stone partner was repeatedly overdosed in hospital has put £80,000 into his fight prove failings led to her death
www.thetimes.com
December 8, 2024 at 9:48 AM
Reposted by It's M.E. Linda
njbbari3.bsky.social
The most spectacular use of the word “most” to minimise a disease that persisted at two years in 30% of all kids that had symptoms at three months.

That is a massive number of kids *not recovered*.

www.theguardian.com/world/2024/d...
Most teenagers recover from long Covid after two years, study shows
World’s largest ‘longitudinal cohort study’ reports that older teens and society’s most disadvantaged most likely to be affected
www.theguardian.com
December 4, 2024 at 10:03 PM
Reposted by It's M.E. Linda
swastrosarah.bsky.social
🧵 #MaeveInquest update - 4/6 institutions responded to the Coroner's Prevention of Future Deaths report at 5pm yesterday. MRC & NiHR have until midnight to meet their obligation to #ME. Current (conservative) estimate 700,000 in the UK.
Publication on the Chief Coroner's website in 'due course'.
December 5, 2024 at 8:45 AM
Reposted by It's M.E. Linda
alexisme.bsky.social
@teamlabouruk.bsky.social as a healthy 36yo I worked 17hr days for weeks at a time leading responses to Covid outbreaks as a senior Dr.

Now severely disabled by long covid at 40, according to my Government I’m “written off”. With 1.3million+ of us why do we not have dedicated research funding&care?
November 27, 2024 at 7:56 PM
Reposted by It's M.E. Linda
binitakane.bsky.social
I saw a patient last week with ME who in 2023 was told by the MECFS service to ‘get back to the gym’. She did 20 minutes, collapsed and hasn’t walked since. The advice is still out there, still wrong and the harm is real.
ozfish.bsky.social Trish Davis @ozfish.bsky.social · Nov 10
Cochrane is stubbornly refusing to withdraw the 2019 review recommending exercise therapy for ME/CFS despite being supplied with ample evidence that it doesn't work and causes harm for #pwME with post exertional malaise.
Please sign the petition:
chng.it/zTZ7vX9Czd
Can you spare a minute to help this campaign?
Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review
chng.it
November 11, 2024 at 9:25 AM
Reposted by It's M.E. Linda
longcovidsupport.bsky.social
🚨Contrary to information about #LongCovid clinics regularly spouted by the Government, what we know to be true was backed-up by Prof Evans at the UK Covid Inquiry:

“Some have very sadly stopped altogether…Probably are few that are really running as the NHS England service specification suggests”
October 29, 2024 at 5:10 PM