Erin M @ErinAPN1 Twitter profile

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Erin M

@ErinAPN1

10 months

My previously healthy child, now 15, is going into surgery today to get tubes placed so we have a way to ensure she gets nutrition and hydration. She got Covid in March 2022 and it’s caused all manner of nerve dysfunction and severe autonomic symptoms, so much that her

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Erin M

@ErinAPN1

10 months

This is what nighttime looks like when you are 15 and you have severe long Covid. Not pictured on the other side of the curtain, the stream of patients and patient’s families (a metre away) who come and go from the room you have lived for months. Here you weep while you softly

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Erin M

@ErinAPN1

8 months

My daughter Sophie is in hospital this Christmas. Add it to; two birthdays, one Easter. We stack up the special days with a horrible resignation. Kept earthside on tubes and pumps without which she’d die of dehydration and starve. In constant awful pain. Vomiting. Dizzy. Can’t

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Erin M

@ErinAPN1

7 months

First day of 2024 sleeping on a pull out chair next to my daughter’s hospital bed (after nearly two years in hospital nothing new there)… she has a high fever from either bacteria in one of her various surgically placed tubes, or her gallbladder. One of the tubes ends in an

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Erin M

@ErinAPN1

6 months

Bumped into a parent in hospital who’s healthy nine year old is requiring a daily blood transfusion to stay alive since getting Covid recently. We don’t know about the damage Covid does and is doing because NO ONE IS KEEPING RECORDS! Anyone else done with this? Time to get

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Erin M

@ErinAPN1

15 days

Lying in the bed next to my #LongCovidKid daughter’s hospital bed, listening in through headphones to Maeve Boothby O’Neill’s inquest. We’ve been over a year here at this hospital. Listening to my daughter’s feeding pump whir. Knowing she’s paid already an incalculable price for

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Erin M

@ErinAPN1

10 months

My long Covid teen just had surgical tubes placed through her abdomen into intestines for nutrition because her digestive system is not functioning. Still vomiting bile and lots of pain. Physio today came to tell us how CBT and exercise are fundamental. #LongCovidKids #LongCovid

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Erin M

@ErinAPN1

6 months

I just spoke to a mum who’s critically ill child has been infected with Covid for the first time at Westmead Children’s Hospital in ICU. Where she says they didn’t wear even surgical masks. @drkerrynphelps @psvbluemts

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Erin M

@ErinAPN1

8 months

Nurse: How’d you sleep? S: I don’t really sleep because of pain. My bowel isn’t moving and it causes cramps all night. Nurse: Yeah….. it’s probably because you’re not expending any energy during the day. Me: She’s currently achieving about 300 calories a day (via J tube and

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Erin M

@ErinAPN1

7 months

Something awful has changed. I am around lots of other parents of sick children all the time in hospital but where has my once abundant compassion gone? I do not want to hear the miraculous stories of other people’s children being saved in the knick of time by medicine. I do

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Erin M

@ErinAPN1

6 months

What do you do when the immunologist treating your child (without you present) tells her the evidence shows those with long Covid get better, she needs to move more and build up her activity, and every single person she’s treated with chronic fatigue syndrome has gotten better.

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Erin M

@ErinAPN1

6 months

My daughter caught Covid at school and it has destroyed her life as she knew it.

COVID Safety For Schools

@CovidSafetyEd

6 months

We’ve just launched the COVID Safety For Schools Course. It’s a free, comprehensive online course for Australian schools to help them keep students and staff safe during the COVID pandemic.

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Erin M

@ErinAPN1

10 months

@healingfromlc I see you. I was going to wish you strength, but rather I wish you good doctors, better research, treatments that work, and better days.

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Erin M

@ErinAPN1

1 month

Long Covid kids are being casually brutalised by healthcare careerists, the ignorant and arrogant, the deeply mediocre practitioners who hide out in the safety of a toxic, but massive, and well resourced system. In any other arena this would be the stuff of immediate outrage,

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Erin M

@ErinAPN1

7 months

NSW Health telling me they won’t require HCW to wear N95 to prevent infection to my severe long Covid child, they’ve now twice exposed to Covid by HCW in hospital. She is currently awaiting her latest PCR test after HCW exposure. They wear N95s when they treat her in theatre, as

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Erin M

@ErinAPN1

5 months

Having a child trapped through their severity in a hospital that doesn’t know how to manage long Covid/ME is like living a triple layered hell. First - the desperation at having them so incredibly sick with a misunderstood disease. Second - being forced to watch a system that

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Erin M

@ErinAPN1

10 months

@ChrisMinnsMP Chris. My daughter, now 15, has catastrophic long Covid. Her gut, gallbladder, bladder and most things connected with autonomic nervous system are not working. She has been vomiting 30+ times a day, tube fed since April last year, three weeks post Covid infection. She was healthy

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Erin M

@ErinAPN1

6 months

@CollignonPeter I’ll tell Sophie you accept the risk to her. Or, can maybe your kids accept her risk? Or the risk to all the other kids on her ward, or in the oncology ward, or in the ICU? Since you’re cool with accepting risks, your family can go first.

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Erin M

@ErinAPN1

6 months

@scotgovhealth @jenni_minto 15. Has vomited at least 1 litre a day for two years. Tube fed/IV fed for two years. Can no longer walk. Pots. Constantly in pain. Gastrointestinal dysfunction from gallbladder to bowel. This is what long Covid looks like.

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Erin M

@ErinAPN1

8 months

@NeurologistMom We get that too - don’t you want to go back to school? They want nothing more - they are desperate for normal. It’s really cruel.

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Erin M

@ErinAPN1

10 months

I spent time with/helped care for my grandmother dying of emphysema and with colitis and other serious illnesses comorbid. I watched two grandparents die of lung cancer. My long Covid 15 year old has far, far worse quality of life than they did, even at the end. Pray it doesn’t

Billy Hanlon

@bhanlon15

10 months

The Guardian: "Long Covid is so debilitating that a study in the British Medical Journal (BMJ) this year found many who suffer it reported a lower quality of life than people with stage 4 lung cancer."

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Erin M

@ErinAPN1

5 months

Exactly this. My daughter is now 15 and bedbound with severe long Covid myalgic encephalomyelitis, similarly constant pain, feeding tube and PN, also countless symptoms. I second EVERYTHING Jo and Neuro Mum say. Pass it on. #LongCovidAwarenessDay #longcovidkids

Jo Greer

@DrJoGreer

5 months

Exactly this. My daughter is now 17 and bedbound with severe long covid myalgic encephalomyelitis, in constant pain, with a feeding tube and countless symptoms. Hard enough on its own but worse still is the constant battle against ignorance and indifference. #pwme #LongCovid

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Erin M

@ErinAPN1

2 months

Too many children with long COVID are suffering in silence. Their greatest challenge? The myth that the virus is 'harmless' for kids - ABC News

Kids are losing 'huge chunks' of their childhood to long COVID. Too many are being told it's 'all...

They're losing their formative years to this debilitating disease. But for too many children with long COVID, finding help is a frustrating and traumatic process that leaves them feeling isolated and...

www.abc.net.au

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Erin M

@ErinAPN1

6 months

Please let my formerly healthy 13 year old daughter’s long Covid paralysed gastrointestinal system and profound autonomic neuropathy know Covid is over. Soon would be good? We are sick of living in in a hospital for years and watching her suffer on a level I didn’t realise

Denis - The COVID info guy -

@BigBadDenis

6 months

Prime Minister Anthony Albanese at the National Press Club today. Australians are living through the aftershocks of the pandemic and people are still getting COVID we're still dealing with the consequences. #COVIDisNotOver @AlboMP @Mark_Butler_MP @AustralianLabor #NPC #auspol

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@ErinAPN1

6 months

@PutrinoLab I could never have comprehended the brutality of this illness if I hadn’t witnessed the relentless suffering. Until I had my terribly funny and clever 15 year old daughter; who loved to surf and run and to read about Confucius, who wanted to be a surgeon since she could talk,

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Erin M

@ErinAPN1

9 months

Just so everyone’s aware, doctors in Australia are telling the population they are probably immune from Covid and not to worry about an eighth wave on National TV @Channel7 @drkerrynphelps @DavidJoffe64 @CrabbBrendan @PutrinoLab @VirusesImmunity @LongCovidNews @LongCovidKids

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Erin M

@ErinAPN1

9 months

@_SharonThornton Thank you.

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Erin M

@ErinAPN1

3 months

My daughter is not collateral damage for your culture wars. This should not be a political disease. Long Covid doesn’t care if you’re liberal or conservative. Those who are sick deserve appropriate care, research and treatments - whatever side of the fence you sit. #LongCovidKids

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Erin M

@ErinAPN1

8 months

I sort of can’t believe we are in the middle of a massive Covid wave and there’s zero mitigation measures in hospitals. Imagine this approach if it were an impossibly virulent strain of TB, which is a level 3 pathogen like Covid (but doesn’t impact your T cells, or cause severe

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Erin M

@ErinAPN1

5 months

What is lost in the conversation of CD4 and T cells and viral persistence and dysbiosis and clean air and pandemic trauma is the people quietly, endlessly enduring. Suffering. When I see my daughter now it is like a harpoon through my heart. When I sleep sometimes, the best

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Erin M

@ErinAPN1

3 months

Hive mind My severe long Covid kid has contracted influenza A in hospital. They are wanting to give tamiflu. Thoughts? Any drug reactions with common LC meds (LDN/Mestinon/Ivabradine) etc? Thank you 🙏 #PWME #longcovidkids #longcovid

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Erin M

@ErinAPN1

6 months

When you think there’s not a lot of light, sometimes the universe gives everyone a moment, an incentive to keep up the fight. A bit longer. A little more. Well enough for a moment to sing - the first time I’ve heard my gorgeous musical girl sing in a long long while……

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Erin M

@ErinAPN1

2 months

Yesterday I was told by a senior specialist there was NO evidence of Covid causing chronic intestinal issues. I know this not to be true. Learned friends, if you’ve got articles that might help, help a lady out. #longcovid #longcovidkids #mecfs #pwme

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Erin M

@ErinAPN1

9 months

Another netball dinner my girl wasn’t at. Another academic awards ceremony my girl wasn’t at. She’s busy being kept alive by fluids going into her bowels to feed her, fluids going into her heart to hydrate her. At the moment bowels paralysed (sort of like a permanent bowel

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Erin M

@ErinAPN1

7 months

@MeghanEMurphy @ambulancecaught You really don’t though. What reality? You’re straight up incorrect. Facts matter.

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Erin M

@ErinAPN1

7 months

@i_petersen @PJPrydderch Good grief. You realise people are finding help for themselves by any means because folks like you erode any political impetus to fund the necessary research and care? They are looking for access to information and health. Your arrogance in telling others what to do and what

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Erin M

@ErinAPN1

7 months

@YouAreLobbyLud I requested N95s be worn after my severe long Covid daughter (as in picc line/tube fed etc) was exposed twice to Covid in the last couple of months by a HCW looking after her. Nursing staff oblige me. Nearly all consultants oblige me. You know who refuses? Infectious diseases

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Erin M

@ErinAPN1

4 months

My girl, before the cyclone of long Covid hit. I believe one day, she’ll ride those waves again. #LongCovidKids #longcovid #CovidIsntOver #Covid #pwME #MECFS

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Erin M

@ErinAPN1

11 months

Some Thursday numbers. $291 billion on Covid subsidies, the Australian Government spent. An unfathomable amount. $15 million on “research” for long Covid, which has already disabled thousands of Aussies (and will continue to do so). $600 per annum, what I get back on the $6 per

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Erin M

@ErinAPN1

4 months

@bbchealth Starts with S and ends in ov-2….

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Erin M

@ErinAPN1

5 months

Dan began to feel fatigued, but being a fit builder he tried to push through it – research now shows is the worst thing to do, even though it was the medical advice at the time.” Terrifyingly despite knowing better… IT IS STILL THE MEDICAL ADVICE IN AU….

Mother heartbroken as son 'loses everything' from chronic fatigue

Lying on his bed 24 hours a day in complete darkness, Dan Harris's life is slipping away. His parents want money put into research to help the quarter of a million Australians with myalgic encephal...

www.abc.net.au

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Erin M

@ErinAPN1

7 months

My post re my severe (picc line/tube fed) long Covid child being exposed to Covid reinfection by her HCW (x the second time) while here in hospital got deleted last night. They haven’t expedited her PCR despite her being febrile, nor have they commenced antivirals. Some people

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Erin M

@ErinAPN1

4 months

@ZebraLoveCo My daughter was asked to make a list of what things were good about being sick by a hospital psychologist. She was 13, and so confused. I had no idea - as I wasn’t present.

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Erin M

@ErinAPN1

8 months

@ToshiAkima Saw kidney transplants in kids after Covid. No one seems alarmed.

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Erin M

@ErinAPN1

7 months

#LongCovid #longcovidkids Another New Years in Hospital. Trying to get glimpses of fire works over the top of hospital buildings feels like an allegory for our lives. But she’s a fighter, our kid. She’s here, and we have hope.

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Erin M

@ErinAPN1

3 months

Strange sweat patterns and flushing. Unable to eat or drink with vomiting. Odd pupillary responses. Whacky gallbladder. All basic functions not running ok. You know how we are going to fix it? With psychology, guys! (2)

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Erin M

@ErinAPN1

4 months

@ChrisMinnsMP What a terrible waste of money.

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Erin M

@ErinAPN1

3 months

The only thing that helped her was IVIg.

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Erin M

@ErinAPN1

6 months

@fcknsyd Sounds about right. I’m really sorry. Can’t believe this is still the protocol.

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Erin M

@ErinAPN1

6 months

So the Premier is out the front of the hospital. Should I doorstop him about my child? I’ve practice as a former Journo.

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Erin M

@ErinAPN1

1 month

@RageSheen My daughter has lived the last seven months in isolation, 800km from home, in a hospital. She spent her whole 15th year in hospital. She spent much of her 14th year in hospital. She was super active (played competitive level sport), high achieving and very social. It was her 16th

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Erin M

@ErinAPN1

6 months

The fight for my daughter to not be another statistic is real. Forced graded exercise does not help ME, or it would have. Removing parents who call this out for what it is does not help the patient.

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Erin M

@ErinAPN1

5 months

Getting better health advice from Time than public health at the moment.

TIME

@TIME

5 months

Why you should rest—a lot—if you have COVID-19

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Erin M

@ErinAPN1

4 months

@EnemyInAState Very similar to my daughter. Was healthy 13 year old, living like this for two years now. Gut etc doesn’t function post Covid for two years. Tube fed/TPN fed. She’s also has sepsis several times in the space of a few months.

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Erin M

@ErinAPN1

7 months

Didn’t even know it existed, far less that it would destroy our 13 year old daughter’s life (and thus our) for nearly two years and counting…. Don’t think it won’t happen to you, please.

charlos

@loscharlos

7 months

We are going to see an absolute deluge of new #LongCovid cases after this monster wave — and there still will be nothing for them — absolutely appalling. If you don’t think it’s going to impact you — just remember that’s what we all thought.

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Erin M

@ErinAPN1

6 months

Please - we need help to ensure children like mine do not become another story of absolute tragedy.

Channel 4 News

@Channel4News

6 months

Myalgic encephalomyelitis: Lives devastated - and sufferers told it's made up

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Erin M

@ErinAPN1

6 months

Everyone who’s angry about this - contact your local member and express concern 🙏

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Erin M

@ErinAPN1

2 months

The trauma being induced by the most desperate and dangerous gaslighting I’ve ever seen, being applied to a child with long Covid, will not go without consequences Shame on these Philistines. Shame on their despicable ignorance and brutish arrogance. #LongCovidKids

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Erin M

@ErinAPN1

3 months

Today a consultant tells me (after we've been promised home for six months, and now we are told we need to stay where they have only declined her longer) that psych is as important as medical as she needs the support for ‘rehab’ or ‘reconditioning’ or whatever terms you want..(3)

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Erin M

@ErinAPN1

10 months

@Marie28002475 She would be a little embarrassed but I think she would feel seen and heartened but it. She doesn’t want to be defined by this illness, but needs the support of community and reminders she is not forgotten. She is very very alone.

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Erin M

@ErinAPN1

3 years

@NearlyTheNews @CFMEUJohnSetka @JoshButler It wasn’t. This is the technique that unions have recently used in Europe to excuse their submission to Governments, and not stand up for their workers. Demonise those who call for support from the organisation which should be working for them. Get wise.

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Erin M

@ErinAPN1

9 months

@LindsayMcA Mediocrity like this in medicine is costing people’s lives. This would be funny if it wasn’t so bloody serious.

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Erin M

@ErinAPN1

7 months

@GillianKeegan What’s your stance on supporting kids with long Covid? Because there’s going to be a LOT more of them. When severe, they end up like my daughter. I hope you’re comfortable with this.

Most young people bounced back after COVID-19. Sophie's case remains 'catastrophic'

The 15-year-old's health deteriorated after contracting COVID-19, and she is now bed-bound and fed through a tube.

www.sbs.com.au

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Erin M

@ErinAPN1

14 days

Listening to Maeve’s Inquest I am so incredibly grateful to my daughter’s private gastro who stepped in, and said enough, and got my child Jejunal tube feeding, when at one point she was starving.

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Erin M

@ErinAPN1

7 months

@ClareCraigPath Let’s repeat expose kids to tuberculosis! They have amazing immune systems!

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Erin M

@ErinAPN1

7 months

@NSWHealth @RyanPark_Keira Is this an acceptable level of treatment/risk for a 15 year old child already nearly two years disabled by Covid (tube/picc line fed/hydrated/vomits 30+ times a day, gallbladder, bladder dysfunction, bowel paralysis, wheelchair/bedbound)? We know

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Erin M

@ErinAPN1

1 year

@robbiewilliams Long Covid’s funny, hey @robbiewilliams It’s a riot, for my previously healthy 13 year old, who for 18 months since Covid has vomited 40+ times a day every day, is tube fed and picc line hydrated (Google it), has gallbladder dysfunction, extreme gastrointestinal dysmotility,

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Erin M

@ErinAPN1

5 months

Joint Hypermobility Elevates Long COVID Risk, Says King's College | Mirage News

Joint Hypermobility Elevates Long COVID Risk, Says King's College

Academics from King's College London and Brighton and Sussex Medical School (BSMS) have found that people with joint hypermobility are 30% more likely

www.miragenews.com

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Erin M

@ErinAPN1

6 months

This excellent article outlines the challenges of navigating healthcare in a country that’s given up trying to prevent vulnerable people, including children, from the serious impacts of a multi systemic vascular disease. On Friday night a mum I’ve gotten to know in hospital

Hayley Gleeson

@Hayley_Gleeson

6 months

imagine losing a loved one because they caught covid in hospital, a place they should’ve been safe. is it ok for kids to catch covid in ICU? cancer patients? nurses? as hospitals roll back precautions, too many are catching the virus and dying, doctors say

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@ErinAPN1

6 months

@ElizaCharley It’s just bizarre. They are pushing things contradicted in UK, US, unsupported by the last decade of research. How can I protect her when they ignore the evidence?

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@ErinAPN1

3 months

@Naomi_D_Harvey Yeah. Directly coincides with them arguing about and temporarily refusing masks. When I asked one nurse told me - no, and you can’t make me. Such a lack of compassion. But hey - it isn’t their kid walking the post viral hellscape right?

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@ErinAPN1

11 months

@NekomataSassy I’m so sorry. My daughter got long Covid at 13 in March 22. She vomits a few times an hour, every day, is tube fed into her intestines, picc hydrated, her bowel, gallbladder and now bladder (she has to have catheters) are not functioning, is constantly dizzy, bed bound.

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@ErinAPN1

6 months

@MattWalshBlog Yes. Agreed. But by suggesting the disease doesn’t exist you’re literally doing the work for the system you rail against.

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@ErinAPN1

4 months

The Times (UK) 17/04/24 “Parents accused of faking their children's #longCovid ” "Medical ignorance is leading to parents of children with long #Covid being reported to social services in an echo of the way professionals dismissed ME, doctors warn"

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@ErinAPN1

4 months

There is "not a single" peer-reviewed study that shows that cognitive behavioral therapy or graded exercise therapy (GET) has "any role" in healing people with ME/CFS or long-term Covid play "which has not been completely discredited by serious scientists"

Experte: Umgang mit ME/CFS ist einer der "größten Medizinskandale"

Der Long Covid-Spezialist und Neurowissenschafter David Putrino fordert bei post-akuten Infektionssyndromen (PAIS) wie ME/CFS mehr Bewusstsein ein. Diese durch Corona stark angestiegenen Krankheiten...

www.sn.at

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@ErinAPN1

4 months

Australia keeps graded exercise therapy in updated Guidelines for MECFS/Long Covid. This should be an international outrage. @RACGP @gemcarey @TraceySpicer @Hayley_Gleeson @Milliganreports @drkerrynphelps @PutrinoLab @VirusesImmunity @DrMaureenHanson @U2Fight_World @LBatemanMD

Eliza Charley | Actress on Pause

@ElizaCharley

4 months

@RACGP How does @RACGP counter the major issue that graded/incremental exercise or activity triggers PEM and can make patients worse overall? 1. They belittle & minimise 2. They deny existence of long-term consequences 3. Explain away patient concerns & advocacy Three examples: 12/

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@ErinAPN1

2 months

@abcnews Majority of these kids were not vaccinated. It’s not vax injury in most.

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@ErinAPN1

3 months

“Never doubt that a small group of thoughtful committed individuals can change the world. In fact, it's the only thing that ever has.” #unitetofight

Marco (is fighting LongCovid 🤺)

@Gmwetz

6 months

I strongly believe we must connect our advocating politicians, scientists and financial investors. Globally ! The problem is too big to handle for one country alone. My aim would be a virtual meeting to craft a collaboration agreement and to define an action plan. Who needs

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@ErinAPN1

3 months

She may be missing, but we see her. #millionsmissing #MEAwareness

BeckyH

@Beckster_2

3 months

My daughter is forgotten, it’s time for that to stop - 9+ years now!! #MEAwarenessWeek #DontForgetME #PwME #MECFSawarenessday

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@ErinAPN1

9 months

@Dr_Ginni What a brains trust. Doing even a modicum of research may assist prior to spreading appallingly dumb messaging. Embarrassing, but worse, dangerous.

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@ErinAPN1

8 months

Her daughter was not the first, and she will not be the last. We live in Australia not the UK, and it’s long Covid not an established virus, but the battle is the same. Listen to patients. Listen to carers. Listen to GOOD doctors. Change must come quickly, for all our

sarah swastrosarah.bsky.social

@swastrosarah

8 months

My daughter was not the first to die from a long established NHS policy of neglecting very severe ME. She will not be the last. The inquest into her death no longer has an interest in the facts. No good can come of it without them. Please remember her, not how she died. 7/7

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@ErinAPN1

8 months

@YouAreLobbyLud Wow. Someone please tell NSW.

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@ErinAPN1

7 months

Journos interested in the story of the century should be following this data. This is what we are allowing persistent repeat infection of the paediatric population with - a pathogen that demonstrates some very disturbing patterns…….

Ilkka Rauvola

@jukka235

9 months

This is one of the top 5 fastest growing diseases in Finland: Disorders of autonomic nervous system (G90). 1/x

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Erin M

@ErinAPN1

5 months

@iamwhoiam63 This is so bizarre. Why on earth do you care?

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Erin M

@ErinAPN1

6 months

@MattWalshBlog You’re missing the real story. It’s this. “It is NOT a surprise to me that medical euthanasia and MAID programs are being instituted around the world. Governments have chosen not to PREVENT post-viral illness. Governments have chosen to not TREAT post-viral illness. We know

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Erin M

@ErinAPN1

9 months

@LongCovidHell @tigresseleanor How bad is too bad? My daughter is facing starvation or TPN - Covid has destroyed her autonomic nervous system function predominantly throughout her gut. She’s had several operations, has a tube into her small bowel to feed which is failing as her gut doesn’t move at all, she

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Erin M

@ErinAPN1

7 months

@MeghanEMurphy @ambulancecaught No, they aren’t the facts. That’s just one person’s (shaped) anecdote. Facts are facts. To deny them as relative is a tenant of postmodernist thought which you clearly don’t grasp. However I can see you largely express the popular rejection of postmodernism. You’re inadvertently

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Erin M

@ErinAPN1

2 months

@CrabbBrendan @Mike_Honey_ @dbRaevn That’s going to deliver a huge chronic illness burden. So very sad.

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Erin M

@ErinAPN1

7 months

@CatherineOrr73 @DrPops3 @Hayley_Gleeson I’m slightly disturbed by the fact that you feel it normal to announce that because you’re ok, all is well. Millions and millions of people are suffering, and significantly so. Perhaps as a doctor, that’s where your focus should be? Treatment and prevention? Not a great look

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