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No longer a PhD student because I am full time caring for 2 people with #LongCovid #LongCovidKids #LCK #pwME #POTS #MCAS #Lyme

United Kingdom
Joined August 2018
Photo by Parrotfish 🌍 (@Parrotfish13)Photo by Parrotfish 🌍 (@Parrotfish13)Photo by Parrotfish 🌍 (@Parrotfish13)Photo by Parrotfish 🌍 (@Parrotfish13)Photo by Parrotfish 🌍 (@Parrotfish13)
It was a privilege to be at @covidinquiryuk as part of @LongCovidKids last week. Over 100,000 children are affected in the UK. They live with horrendous symptoms every day. Some like my son have had to give up physical activity, friendships and full-time education. Others are confined to bed, invisible to society; unable to tolerate light, sound and even food and drink. There are no approved treatments and no proper services for these children. Families are often forced to seek private healthcare. On top of this, they have to fight to be believed; too many have been accused of fabricating their child’s disease simply for advocating for them or because the child’s attendance has dropped below targets. It is not a few months of lockdown or masking that has damaged the health of our children. It is the recurrent exposure to a deadly vascular virus which continues to kill & disable millions. Covid never went away; we know that the risk of Long Covid is cumulative (5% with each infection). The risk of acquiring it can be dramatically reduced by cleaning the air in indoor spaces; yet there is zero investment into this area, and children continued to be forced back to unsafe classrooms. This is despite the evidence that apart from reducing the risk of respiratory infections, ventilation improves academic performance and attendance. Of his (at least) 5 infections, 3 of my son’s were acquired through school. We wouldn’t drink dirty water; why are we happy to breathe dirty air? I hope this inquiry results in some accountability for those responsible for the negligence that has resulted in the mass disabling of millions of children and adults. And that there is increased recognition of the need for treatment, support and most fundamentally, for these children & their families to be believed. This is for you my boy 👦🏼❤️. ‘Abbu’ will never stop fighting for you. #COVIDinquiry #children #longcovid #longcovidkids #publicinquiry #volunteers
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Please support, sign, circulate our petition for safer health care petition.parliament.uk/petit…
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The Long Covid groups speak as one today, telling the world that anyone can get #LongCovid Please share our message and call for treatment, #CleanAir and support for the millions living with Long Covid. #ItCouldHappenToYou longcovidgroups.org/it-could…
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🗓️ Today is the day… 📣 Long Covid Groups Awareness Campaign comes together. 🚚 On the day the former Prime Minister Boris Johnson faces the UK Covid-19 Inquiry, our “It Could Happen To You” digivan campaign will hit the streets of London.
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Parrotfish 🌍 retweeted
Today Boris Johnson is at the Covid Inquiry. So are we. Today we deliver a letter to No10 requesting investment into research and trials for Long Covid. Please sign our petition. bit.ly/46Hjjn1 longcovidgroups.org #LongCovid #LongCovidKids #ItCouldHappenToYou
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1.9 MILLION people (at last count) are living with #LongCovid This includes 62,000 kids Anyone can get Long Covid #ItCouldHappenToYou Over 2,000 signatures since yesterday. Let’s keep this momentum going & deliver the letter tomorrow with as many signatures as possible 🔗👇🏼
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ANYONE CAN GET LONG COVID #ItCouldHappenToYou PLEASE share the messages we are putting out on Social Media this week We are working in unison with the other #LongCovidGroups on behalf of the #LongCovidCommunity and the wider public to get the message out. 🔗 below 👇🏼
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Parrotfish 🌍 retweeted
There is NO CURE for Long Covid. We urgently need more investment into RESEARCH for Long Covid. Please sign the petition: bit.ly/46Hjjn1 #ItCouldHappenToYou #NoCure #ResearchLongCovid #TreatLongCovid #LongCovid #LongCovidKids
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Parrotfish 🌍 retweeted
📣SIGN #LongCovidGroups’ LETTER TO NO. 10 ➡️ bit.ly/46Hjjn1 Approx. 2m in UK with debilitating #LongCovid. ❗️There is No Cure! ❗️Last dedicated research funding from Government was in 2021 - minimal focus on treatment! @long_covid #ResearchLongCovid #ItCouldHappenToYou
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Parrotfish 🌍 retweeted
It's #PosturalTachycardiaSyndrome (PoTS) Awareness Day - @UKPoTS  - 50% of #PoTS patients are unable to attend work or school - 25% of people with PoTS are wheelchair users -  Pre Covid PoTS was estimated to affect 135,000 people in the UK #pwME #MyalgicE #LongCovid
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Parrotfish 🌍 retweeted
✨Today✨ is our 4th ⭐️⭐️#PoTSAwarenessDay⭐️⭐️ Please share our posts as much as possible throughout the day💜 For those with #PoTS, please join us by sharing your stories & experiences of PoTS and include the following tags in your posts: @UKPoTS #PoTSAwarenessDay For more information about PoTS, please visit our website: potsuk.org #TakeAStandForPoTS #EDS #MCAS #MECFS #LongCovid #PostViral #MedTwitter #TeamGP
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🟪🟪🟪🟪🟪🟪🟪🟪🟪Today is POTS Awareness Day. An awful, life altering desease that few people know about. 💜 Many people with #LongCovid develop Postural Orthostatic Tachycardia Syndrome (POTS). More awareness & research is needed! Find out more 👇🏼👇🏽 potsuk.org/
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Parrotfish 🌍 retweeted
#GiveUsHope #ListenLearnHope #LongCovidRuinsLives I support the call by #LongCovidKids that the @covidinquiryuk appoint a paediatric Long Covid expert witness to help them understand what has happened to my child and all children and young people living with #LongCovid
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Parrotfish 🌍 retweeted
I support the call by #LongCovidKids that the @covidinquiryuk appoint a paediatric Long Covid expert witness to help them understand what has happened to my child and all children and young people living with #LongCovid. Families deserve answers. #GiveUsHope #ListenLearnHope
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We implore the @covidinquiryuk to make clear #PublicHealth messaging a priority in current and future pandemics. Alert families to risk and preventable disease. It isn’t a job for patients. #CovidIsAirborne #ListenLearnHope #LongCovidRuinsLives #GiveUsHope
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Parrotfish 🌍 retweeted
These are the words children injured by #COVID use to describe their #LongCovid experience. Please hear them @covidinquiryuk If Long Covid was foreseeable, why was it not foreseen? #GiveUsHope #ListenLearnHope #LongCovidKids #CovidInquiry #LongCovidRuinsLives @LongCovidSOS
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Parrotfish 🌍 retweeted
🧵Today I’m supporting Long Covid Kids at the UK Covid Inquiry. Children with Long Covid want hope for a brighter future. Their words in the images below remind us why the UK COVID inquiry has such a vital role to play in their future. #ListenLearnHope #GiveUsHope
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Parrotfish 🌍 retweeted
1/2 Thanks to the very brilliant ⁦@CathNoakes⁩ & others we have clear evidence that Air filtration reduces Covid out breaks in schools & improves attendance rates. Please EVERYONE Sign & share far & wide to try & get a Clean air act to protect us all petition.parliament.uk/petit…
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Parrotfish 🌍 retweeted
So, schools are back (earlier in Scotland), and despite generous deployment of porous concrete, STILL no attention to ventilation 😉 ALSO, STILL NO CHILDREN'S VACCINES 🤬 No, we just bathe them in "natural infection"?🤢 Please @UKHSA/#JCVI, justify this in light of:
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Parrotfish 🌍 retweeted
Did you know if you've got Long Covid in the UK you're not eligible for the booster this autumn? petition.parliament.uk/petit… People with Long Covid don't want to keep getting covid when they're already poorly and vulnerable to infection. Please sign this petition to change this.
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