Sammie McFarland @SammieFMc Twitter profile

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Sammie McFarland

30 days

The @covidinquiryuk has the job of identifying, listening & relying the experiences of children & young people. Children living with #LongCovid come under all categories identified. #LongCovid is a pandemic injury. I hope enough CYP with LC are heard @Jane_Ryan_ #LongCovidKids

UK Covid-19 Inquiry

@covidinquiryuk

30 days

/1 The Inquiry will begin to hear from hundreds of children and young people about how the pandemic affected them as our Children and Young People Voices project gets underway. Find out more 👇 👇

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Sammie McFarland

@SammieFMc

4 months

“There’s a powerful argument that just as cholera was stopped by cleaning the water, Covid will be stopped by cleaning the air. The 🦠 thrives in badly ventilated, shared spaces – especially classrooms, where 👩🏽‍🎓 👨‍🎓 sit together for long periods” Jan 2023

We are all playing Covid roulette. Without clean air, the next infection could permanently disable...

As rich people plough money into ventilation to protect themselves, those with long Covid are treated as an embarrassment, says Guardian columnist George Monbiot

www.theguardian.com

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Sammie McFarland

@SammieFMc

8 months

🧵Am I the only one? Can we talk about #insurance & #LongCovid ? This wk I submitted a complaint to @financialombuds Short version! Pre #LongCovid I was a fit/strong #Pilates Coach. I had income protection w @HollowaySociety - they stopped paying out in May. #HollowayFriendly

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Sammie McFarland

@SammieFMc

5 months

@SGriffin_Lab @NicolaKSDavis @chrischirp @drsimonwilliams My parents were due to visit this morning & took a test to check to protect us 😞 It’s going to be a bumpy ride this winter. People reporting a ‘nasty cold’ & don’t see the point of testing… Major fail in #PublicHealth messaging, feels as impossible as raising the #Titanic

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Sammie McFarland

@SammieFMc

10 months

Long Covid Awareness post ❤️‍🩹 Covid March 2020 Shingles Dec 2021 Covid March 2022 Covid Feb 2023 Shingles May 2023 Chest Infection -June 2023 awaiting swab results #ItsAllInMyFeet #PoTS #LongCovid #pwLC #FBLC #LongCovidAwareness

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Sammie McFarland

@SammieFMc

1 year

For a while now I’ve been an #ambulatory #wheelchair user. It means that I fall under the umbrella of having a #disability and that I sometimes need to use a wheelchair but I’m also capable of walking sometimes. Since I got #Covid and developed #LongCovid it’s a useful aid.

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Sammie McFarland

@SammieFMc

3 months

Thank you @doctor_oxford for being clear on @GMB with @susannareid100 @edballs that there still isn’t the #PPE available for #NHS staff now. “please can we have a government that’s honest” “We tried everything we could” @jed_mercurio

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Sammie McFarland

@SammieFMc

4 months

Almost 4 yrs of #LongCovid , watching the world from bed more days than not & unable to #exercise teaches you to find joy in little things. This #reinfection has been brutal. After a tough day, a beautiful #sunset Preventing Long Covid is everyone’s responsibility. #LongCovid

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Sammie McFarland

@SammieFMc

7 months

As we have repeatedly said since 2020 and I include in my statement to the @covidinquiryuk ... Families need clear public health messaging. They haven't had any warning at all. None Zero. @UKHSA ?!? @SteveBarclay #LongCovidKids @LongCovidKids

Long Covid Kids - #LongCovidKids

@LongCovidKids

7 months

Elevated biomarkers for blood vessel damage were detected in all the children. 21 of the patients showed minimal to no symptoms 11 had severe symptoms 18 developed alarming complications Further #research is required #LongCovidKids #LongCovid #GiveUsHope

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Sammie McFarland

@SammieFMc

8 months

My D stayed home today. Yesterday she was really excited to get back. Then she was faced with no ventilation, ☀️ hot rooms, thick uniform, strict rules, kids with #Heatstroke , some fainting. She tried to explain that she needed to be in cool clothes due to #PoTs #LongCovid - a

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Sammie McFarland

@SammieFMc

9 months

Headlines like this are laugh or cry moments. How many longhaulers have shared photos of #BlueLegs in the last three years? At least it’s made it to a headline! #LongCovidAwareness #LongCovid @SkyNews #PoTs @BinitaKane @Sunny_Rae1 @resiapretorius

Sky News: Breaking, UK & World

A number of long COVID symptoms have been observed since research into the condition began, including impacting the autonomic nervous system, which is responsible for regulating blood pressure and...

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Sammie McFarland

@SammieFMc

4 months

As a health & fit pro of over 20 years is like nothing more than to get back to exercising BUT “It damages your muscles, it worsens your metabolism, and it can explain why you feel muscle pain and fatigue up to weeks after the exercise,” #LongCovid

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Sammie McFarland

@SammieFMc

6 months

Thanks to @ITVTonight for covering my story and the challenges faced by people with Long Covid and long-term conditions tonight. Tough watch for our household. @DrAmirKhanGP @JimBethell #LongCovid #itv

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Sammie McFarland

@SammieFMc

8 months

I haven't fully recovered. I am suffering a loss of earnings The plan hasn't reached the end of term I am not yet dead. So where do I go from here? Suggestions welcome. If you made it this far, 🙏 #pwLC #LongCovid #LongCovidAwareness (me b4 LC doing what I 🥰 days b4 🦠)

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Sammie McFarland

@SammieFMc

5 months

I find it intriguing that the GP just asked me to sit in the car until called in because I have spots….. but if I have cold like symptoms I could technically rock right on into they waiting room. Simple protocols could be adopted so easily to reduce #Covid #LongCovid

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Sammie McFarland

@SammieFMc

1 month

“We have compelling data that viral persistence is much more common than recognized which could have major health implications.” @microbeminded2 #LongCovid #LongCovidKids #research

COVID-19 Virus Can Persist in the Body More Than a Year after Infection - PolyBio Research Founda...

Lancet study solidifies evidence of long-term viral persistence after COVID; demonstrates urgency of sustained research into the chronic health consequences of...

polybio.org

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Sammie McFarland

@SammieFMc

11 months

For the umpteenth time since 2020 since 🦠 infection my previously healthy daughter is is hospital w symptoms inc pain and high temp & head scratching. #Research to understand #LongCovid & what it is doing to our children is urgent 🚨 #LongCovidKids

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Sammie McFarland

@SammieFMc

3 months

When you tell the🚕 that you are going to #BAFTA2024 & he drops you to the entrance 😂 🤣 I wasn’t up to helping but took ☕️ for the early team. The fab @David_Tennant took a flyer & #LongCovidAwareness ribbon. @waltz_tales @andreabarrett__ #EEBAFTAs #ProtectTheHeartOfTheArts

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Sammie McFarland

@SammieFMc

3 months

Are you healthy enough to give blood? 1.9 million with Long Covid can’t. #LongCovid touches us all, directly, or indirectly. That’s why preventing infections must be a priority. We need investment for air filtration in public spaces likes schools & #PublicHealth campaigns.

Long Covid Support 🌍

@long_covid

3 months

🚨 Did you know… ‘NHS Blood & Transplant’ states that you cannot donate blood if you have #LongCovid : “If you have been diagnosed with Long Covid or have had symptoms for over 12 weeks then you need to wait until it is at least 6 months since all symptoms have gone”

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Sammie McFarland

@SammieFMc

8 months

worked with what she had to solve the problem & soaked her clothes in water 💦 to bring down her temp. She repeated this until the 🚌 came.. I am so proud of her. Advocating for your health is hard #LongCovidKids #LongCovid

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Sammie McFarland

@SammieFMc

8 months

traumatic brain injuries, stroke, and dementia"😢 A wk later this research came out. Receiving & reading the report was soul destroying, it broke me. So despite comprehensive medical evidence, on top of managing #LongCovid , it now seems I have a legal

Long Covid can impair quality of life more than advanced cancers, study says

Some patients’ health-related life quality scores worse than those of people with stage 4 lung cancer

www.theguardian.com

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Sammie McFarland

@SammieFMc

8 months

Conclusions These findings suggest in-utero transmission of SARS-CoV-2 and possible persistent intestinal viral reservoirs in the newborns. Further investigation is required to understand the mechanisms and their clinical implications. 😔 #LongCovidKids

SARS CoV-2 detected in neonatal stool remote from maternal COVID-19 during pregnancy

Pediatric Research - SARS CoV-2 detected in neonatal stool remote from maternal COVID-19 during pregnancy

www.nature.com

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Sammie McFarland

@SammieFMc

7 months

My daughter felt abandoned. I felt abandoned. Three years of unnecessary medical gaslighting because the science wasn’t shared down the line. Poor choices that destroyed lives. Thanks @selkieO for being clear, unlike the @GOVUK who were not. #LongCovid #LongCovidKids

Long Covid SOS

@LongCovidSOS

7 months

"We felt abandoned...many people felt that they were really on their own - no one was researching us" "There was a huge amount of gaslighting...the trauma of not being believed was one of the worst aspects" Our Co-founder @selkieO at @covidinquiryuk @long_covid @LongCovidKids

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Sammie McFarland

@SammieFMc

5 months

No time to prepare and straight from the heart. Unlike the former PM who had clearly been coached & lacked compassion. He continues to psychologise #LongCovid & mislead the inquiry with undocumented / untrue claims. My daughters life has been altered, he needs to wake up ☕️

Aamer Anwar✊🏾🏳️‍🌈#BlackLivesMatter

@AamerAnwar

5 months

Today @SammieFMc from @LongCovidKids spoke for @long_covid @LongCovidSOS groups & others at the press conference following @BorisJohnson ’s evidence @covidinquiryuk

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Sammie McFarland

@SammieFMc

8 months

My child is living with a preventable #disability due to poor decisions made during the pandemic. As am I. The @covidinquiryuk must get answers and make prompt recommendations to protect children, & adults. #LongCovidKids #LongCovid

Long Covid Kids - #LongCovidKids

@LongCovidKids

8 months

NEW BLOG "To avoid and minimise Long Covid is an error the @GOVUK made throughout the pandemic resulting in devastating long term harm to the health of thousands of people in the UK" @Jane_Ryan_ #LongCovidKids #LongCovid @LongCovidSOS @long_covid

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Sammie McFarland

@SammieFMc

5 months

We delivered our letter to @RishiSunak @10DowningStreet This is the wheelchair my daughter & I share, she couldn’t come with us as she has only just recovered from her 3rd #COVID + Almost 4 yrs with #LongCovid . She needs to know our PM is taking action for her future. #HelpUs

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Sammie McFarland

@SammieFMc

11 months

I’m so proud of all #LongCovidKids team have achieved since 2020. We were ignored, ridiculed, challenged, gaslit, made to doubt our gut instincts. At the same 🕰️ as caring for our children, fighting for their healthcare & managing our own symptoms. 🙏 support & RT. #LongCovid

Long Covid Kids - #LongCovidKids

@LongCovidKids

11 months

We have been; Believing Caring Listening Learning Researching Advocating for families, children & young people with #LongCovid & related illness since 2020. Please support our work so we can continue. #LongCovidAwareness #LongCovidKids

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Sammie McFarland

@SammieFMc

4 months

Air filtration in indoor spaces, especially schools HAS TO BE part of our strategy to ‘live with #COVID19 ”. Preventing disease 🦠 and supporting wellbeing is the only way to improve health & learning outcomes & sustain our economy. #LongCovid #Education @carolvorders

Long Covid Kids - #LongCovidKids

@LongCovidKids

4 months

“It doesn't matter how much sleep Tracey gets. Once in the top group of her grammar school, she now struggles to stay awake in class” “Tracey’s Head of Yr is being treated under the Adult #LongCovid Clinic herself & has the same symptoms” #longcovidkids

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Sammie McFarland

@SammieFMc

8 months

battle ahead. The last 3 years have been tough😔 Could really do with some support & advice on next steps 🙏 Has anyone else in the #LongCovid community had a similar experience with #incomeprotection companies or #CPAD tests? My @HollowaySociety policy advises that they will

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Sammie McFarland

@SammieFMc

8 months

nauseous, dizzy & my brain was on fire. I was tearful. 6wks later I received an email staring my claim had been terminated with immediate effect - the test results had been "wholly inappropriate and inconsistent" & noted "These scores are lower than patients suffering from severe

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Sammie McFarland

@SammieFMc

4 months

Hundreds of doctors are planning to sue the NHS over claims inadequate PPE on the frontline has left them with long COVID, disabled, and in financial ruin. #LongCovid #NHS @SkyNews 💪🏽 @fearnley_k

'The NHS sold out its staff': Doctors whose lives were devastated by long COVID to sue health...

Doctors have told Sky News they have been off work for more than two years, suffering severely reduced mobility and frightening symptoms such as auditory hallucinations and tremors.

news.sky.com

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Sammie McFarland

@SammieFMc

8 months

She would like to be at college w friends, but #LongCovid symptoms frustrate everything she does. There are 1000’s of kids out of education that could be in a classroom with solution focused problem solving. #CleanAir @GillianKeegan #attendance #LongCovidKids

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Sammie McFarland

@SammieFMc

4 months

Help Kitty get some wheels! We are so proud of our girl for taking this step. She didn’t qualify for an EHCP so she’s taking steps to get the wheels she needs. She wants to do the best she can in her #exams this yr #LongCovidKids #LongCovid #Education .

Help Kitty get wheels (an electric wheelchair), organized by Kitty Mcfarland

Hello everyone, my name is Kitty. I am 18 years old and I have Long Co… Kitty Mcfarland needs your support for Help Kitty get wheels (an electric wheelchair)

www.gofundme.com

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Sammie McFarland

@SammieFMc

23 days

It’s hard to imagine how any parent would have the time or energy to fake their child’s illness. 🤦‍♀️ @thetimes printed this story last week- but I can’t find it online. I’m really proud that @LongCovidKids #LongCovidKids #LongCovid

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Sammie McFarland

@SammieFMc

8 months

Against the advice of my consultant HF insisted I complete a #CPAD assessment. A series of tests taken over two days, with a day rest inbetween. I have had chronic, diagnosed, life changing #LongCovid #PoTs #PESE since March 2020, reinfected in March 2022 & Feb 2023. Each

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Sammie McFarland

@SammieFMc

8 months

Tests were scheduled for March. Sadly I got #reinfected in Feb & had been in bed for a mth pre #CPAD tests. On top of #LongCovid , I was fighting acute #COVID symptoms. I notified the company & was not offered an option to postpone. I was so weak. My husband drove me to the

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Sammie McFarland

@SammieFMc

8 months

debate ensued. College, rules say uniform. D says, it’s 30 +☀️, I can’t regulate my temp #dysautonomia limbs are swelling up. Staff get firm, she followed rules for 1 more hour, then stood up for her #health & explained that their request is entirely unreasonable. She then

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Sammie McFarland

@SammieFMc

1 year

#LongCovid kept me in bed for months on end. I watched seasons change through a window. At 1point I didn’t think I’d ever have the energy to do anything again. 3+ years #Pacing , some meds to manage some symptoms - everything feels more precious. #Sunset #Dorset #LongCovidKids

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Sammie McFarland

@SammieFMc

7 months

@NikkiS_MCSFS @long_covid @LongCovidSOS @LongCovidKids ...and yet nothing was done to warn us or to protect us... Almost 2 million people were injured by the virus and living altered lives, many unable to work, or study. So many are now disabled. Utterly shameful.

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Sammie McFarland

@SammieFMc

6 months

I’m confused. Why do clinicians need to understand #LongCovid BEFORE a #publichealth campaign to PREVENT risk of Long Covid can be launched ? Why couldn’t families be warned and alerted!? @SGriffin_Lab @BinitaKane @Daltmann10 @MichaelRosenYes #CovidInquiry #LongCovidKids

Long Covid Kids - #LongCovidKids

@LongCovidKids

6 months

"I cared a lot about this for personal reasons as well as professional" @MattHancock Q - Do you happen to know why the public campaign wasn't launched until October? A - The clinicians found it hard to get a handle on the term at first.🤔🤔 #LongCovid #LongCovidKids #CovidInquiry

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Sammie McFarland

@SammieFMc

8 months

reinfection has triggered significant relapse & worsening of symptoms. (All in my medical records) After mths of taking stressful phone calls, emailing HF #research to try to explain #LongCovid & why I was worried about the #CPAD test ( #PESE ) just b4 Xmas, I received an email

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Sammie McFarland

@SammieFMc

8 months

tests. It was extremely stressful. The room was cold, I have #Dysautonomia - had to keep my beanie hat on. I was asked to sit upright in a chair #PoTs , sign consent forms & quizzed about my condition. That took around 2 hrs. The assessor noted I was using my arms to keep my head

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Sammie McFarland

@SammieFMc

8 months

continue to pay claims up until one of the following situations occurs: - You Recover and are able to Fully return to work. - You no longer suffer a loss of earnings. - The Plan reaches the end of the term. - if you die. #LongCovid #legalsupport

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Sammie McFarland

@SammieFMc

7 months

After an emotionally difficult day yesterday at the @covidinquiryuk it was SOOOOO nice to be around like minded individuals/researchers/patients/clinicians @SHED_uk @DerbyUni striving for positive change. Thanks @DrMark_Faghy 🤗 ❤️ #LongCovidKids #LongCovid

Mark Faghy

@DrMark_Faghy

7 months

@LongCOVIDPhysio @long_covid @LongCOVIDEurope @LongCovidAdvoc @BinitaKane @LindsaySkipper @SarahBarleyMc @SammieFMc Now hearing from our panel which includes the wonderful @SammieFMc who has made a huge impact with @LongCovidKids This lady lives with LC and travelled to be here after a day at the informing and advocating at the @covidinquiryuk

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Sammie McFarland

@SammieFMc

7 months

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

Long Covid Kids - #LongCovidKids

@LongCovidKids

7 months

1. KC Anthony Meetzer questions Professor @kamleshkhunti at @covidinquiryuk "For those children who do suffer long illness duration, there may need to be guidance to parents careers and schools on how to support them, would you agree this seems to be a

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Sammie McFarland

@SammieFMc

5 months

Behind the scenes of advocacy- passion, commitment, exhaustion, determination from a group of patients fighting our corner because what other choice is there? 🙏 everyone 💕 @LongCovidSOS @long_covid @LongCOVIDPhysio @oonagh_cousins @DaviesLunt @selkieO @JoD66 @RogersNat70

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Sammie McFarland

@SammieFMc

8 months

stating my claim would be 'paused' if I didn't consent to completing the tests. HF said I didn't have to take the test, "it's voluntary" but I later received an email stating my claim would be terminated if I didn't take the test. I had to no choice other than to comply.

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Sammie McFarland

@SammieFMc

4 months

This is the messaging families need. Hiding the risk of infection doesn’t serve anyone. Not our children and certainly not our economy. #COVID can lead to #LongCovid , which can be disabling for years. Families need to know this is a risk, & how to mitigate against that risk.

Long Covid Kids - #LongCovidKids

@LongCovidKids

4 months

“An urgent #LongCovid warning has been issued especially among children as hospital cases surge - with the symptoms and signs to watch revealed. 100,000 people - including children - are at risk of developing Long Covid in the coming weeks, experts fear. @SGriffin_Lab , an

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Sammie McFarland

@SammieFMc

8 months

“We know covid causes blood clots” “Symptoms like brain fog could be caused by clots on the brain” “Some people have benefited from anti clotting medication - not currently available in the UK” watch on @BBCMorningLive catch-up for full interview @DrRanj #LongCovid #teamclots

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Sammie McFarland

@SammieFMc

8 months

back for the 2nd test. It was a different room, warm. I already had #PESE symptoms. I had to sit in a upright chair, was asked to perform grip tests, head ROM, sit & stand. I could feel my feet swelling #PoTS , felt faint & dizzy. I asked if I could sit on the floor to #LongCovid

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Sammie McFarland

@SammieFMc

8 months

he was making a clinical decision to terminate the test as it wasn't safe to continue. I again said I was concerned @HollowaySociety wouldn't have the info they wanted, he advised that it was his decision. Exhausted & symptomatic I went home and slept. Two days later went

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Sammie McFarland

@SammieFMc

2 months

4 year #LongCovid anniversary for us. The unpredictability continues. Final exams last wk = 😔 K’s been unable to tolerate light with eye pain since Saturday & in a dark room unable to do anything. This isn’t her usual. #LongCovidKids @ChildrensComm @RCPCHPresident

Sammie McFarland

@SammieFMc

2 months

When Kitty fell ill in 2020, uncertainty loomed large. Missing 2 yrs of schooling, she persevered, conserving energy for exams at home, pursuing a college education, & now preparing for finals with conditional offers from uni's. #Hope on💪 #LongCovidAwarenessDay

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Sammie McFarland

@SammieFMc

3 months

“They were there to support the sick and injured now they are sick and injured through no fault of their own.” @fearnley_k @Jane_Ryan_ @Dorsetecho #LongCovidKids #LongCovid

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Sammie McFarland

@SammieFMc

1 year

It's an honour to be chosen as Coronation Champion. My greatest hope is that this recognition attracts investment for @LongCovidKids so we can find the best possible treatment options soon. #CoronationChampionsAwards @RoyalVolService #LongCovidKids #LongCovid #Coronation

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Sammie McFarland

@SammieFMc

9 months

#WhyIWearAMask Okay, so mask-wearing isn't always ideal...🤣🤣 I've yet to look glamorous ...but neither is #LongCovid . I've had 3 #COVID infections, and each one has made my LC & #PoTs symptoms worse. 🙏🏼 Reduce your risk, #MaskUp and be part of the solution. #LongCovidKids

Long Covid Kids - #LongCovidKids

@LongCovidKids

9 months

#WhyIWearAMask "I dont want to get COVID again. The 2nd time I got COVID it made my Long Covid a lot worse and I still haven't fully recovered" "it will reduce the spread of COVID" #LongCovidKids #LongCovid #MECFS #PoTs @WHO_Europe @LongCOVIDEurope @LongCovidSOS @long_covid

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Sammie McFarland

@SammieFMc

8 months

up & said I looked fatigued. I was exhausted. I explained I was worried about failing to provide the inform @HollowaySociety wanted to assess my health/ability to work. I completed a long written history. By which point the assessor noted I was pale and slumping he stated

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Sammie McFarland

@SammieFMc

4 months

That this is necessary is an absolute scandal. No child should be left without the healthcare they need. Keep fighting @HelenMMGoss 💪🏽 🫂 #LongCovidKids #LongCovid

Long Covid: NHS legal action launched by family of girl

The mother of an 11-year-old Aberdeenshire girl claims failings were made by NHS Grampian.

www.bbc.co.uk

Helen Goss

@HelenMMGoss

4 months

Today, our family announce formal legal action after years of denied care for Anna's #LongCovid #LongCovidKids We aim to hold @NHSGrampian accountable for consistent failures in their duty of care, secure the healthcare Anna needs, & drive positive change. Our statement👇

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Sammie McFarland

@SammieFMc

11 months

My 17 year old daughter is living with a preventable airborne disease - #LongCovid while we wait for treatment options. First infected in 2020, then reinfected in 2023 she has been living with #disability ever since. #BreatheHealth #CleanAirDay #LongCovidKids #LongCovid

Long Covid Kids - #LongCovidKids

@LongCovidKids

11 months

Today is #NationalCleanAirDay ! We should be able to breathe clean air like we drink clean water. It's time to take action & make a difference! Let's join forces to reduce air pollution and improve indoor air quality. #cleanairday #longcovid #longcovidkids

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Sammie McFarland

@SammieFMc

7 months

🧵 Enjoyed my visit to Derby for the SHEDding light on #longcoivd conference and also grateful to participate in the #research led by @drmark_faghy and his team @DerbyUni @RebeccaOwen13_ @CallumThomas96 put me straight at ease, explaining each step and giving me time to ask

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Sammie McFarland

@SammieFMc

4 months

In 1mths time it will be 4yrs since I got 🦠 I joined the grassroots movement to drive change & understanding, but nobody can fight forever. Reading 😢 💔 posts from the #MECFS community today is poignant reminder of that. #HealthEquity #LongCovid #MyalgicEncephalomyelitis

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Sammie McFarland

@SammieFMc

4 months

The U.K. is currently blind to #COVID19 It’s a #SCANDAL Please sign ✍️ to Restore COVID-19 wastewater monitoring in 🇬🇧 #LongCovid #LongCovidKids #WasteWater

Petition: Restore COVID-19 wastewater monitoring in England

Wastewater testing for SARS-Cov-19 (COVID-19) virus, authorised by the government and implemented by the Joint Biosecurity Centre, Defra and the Environment Agency, that had provided an early warning...

petition.parliament.uk

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Sammie McFarland

@SammieFMc

4 months

Please consider signing to support the withdrawal of the ableist @educationgovuk campaign containing advice that directly conflicts with other gov messaging and further risks confusing the general public mid pandemic via @UKChange #LongCovid #LongCovid

Sign the Petition

Urge the DfE to Withdraw the Harmful School Attendance Advertising Campaign

www.change.org

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Sammie McFarland

@SammieFMc

5 months

At 2.30pm today the Long Covid Groups will take our letter to @10DowningStreet This will be the 2nd time I have knocked on the door to urge the government to address #LongCovid The former PM ignored #LongCovid . @RishiSunak please act. #pwLC are voters too ✍️ 👇

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Sammie McFarland

@SammieFMc

8 months

help manage symptoms, this was recorded as 'the chair was uncomfortable'. Yet at the time the assessor asked if I was okay, & said he could see I was "drained & yawning". He recommended that I stop. I was so worried that @HollowaySociety wouldn't have information they said they

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Sammie McFarland

@SammieFMc

8 months

significantly, it felt like my brain was on fire. Tests on a static screens felt more manageable at first. I was determined to get it all over with so I wouldn't have to do it again, but I was unable to complete the tests. The assessor returned & shut the laptop. I was exhausted,

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Sammie McFarland

@SammieFMc

10 months

1/2 According to @givebloodie if I lived in #Ireland I would not be able to give blood because I have #LongCovid What is the situation in the UK/other countries? Is it to protect the donor or recipient? #GiveBlood #BloodDOnation #pwME #pwLC #LongCovidAwareness #BloodBank

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Sammie McFarland

@SammieFMc

9 months

@5_News @mciver1977 @Ruth5News Finally. The people who said it’s all in our heads can feel validated. 😭 😆 It’s atrocious how #pwLC have been gaslit and minimised, ignored and ridiculed. I hope 🤞 health inequalities are addressed & treatment options become widely available soon. #TreatLongCovid

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Sammie McFarland

@SammieFMc

3 months

"A woman was forced to use her #student loan to buy her own wheelchair after being told she did not meet the criteria for an #NHS one. Bethany Handley, 24, faced a choice between that or being stuck in her student house." #Disability #Wheelchair #Inclusion

Disability: Student forced to use loan to buy own wheelchair

A disability activist says she "assumed" she would get access to an NHS wheelchair when needed.

www.bbc.co.uk

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Sammie McFarland

@SammieFMc

10 months

The smoke and mirror approach that has been used in #longcovidkids public health messaging resulted in disease & death of children. This was preventable, it still is. The @covidinquiryuk must provide answers & firm, prompt recommendations that will protect children from risk.

Long Covid Kids - #LongCovidKids

@LongCovidKids

10 months

“These figures are extremely concerning. Children rarely get ill, so a disease affecting 2% of young children to a level that it’s causing restriction of day-to-day activity is a huge public health problem.” @dgurdasani1 #LongCovidKids

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Sammie McFarland

@SammieFMc

5 months

Dear @RishiSunak The best gift you could give the economy (and my daughter) this #Christmas is investing in #LongCovid . We look forward to your repose to our letter delivered on the 6/12/23. #AllIWantForChristmas #LongCovid #LongCovidKids #TreatLongCovid #ItCouldHappenToYou

Long Covid Kids - #LongCovidKids

@LongCovidKids

5 months

Can you help us hit out next target by #Christmas ? Can we get over 5000 signatures on our petition of support for our 5 step plan for Long Covid? Check out our letter. #LongCovidKids #LongCovid #Christmas2023

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Sammie McFarland

@SammieFMc

5 months

My favourite decoration made 10 yrs ago by my youngest. It brings so much joy. My daughter can’t remember making it. She has lost so many memories since 2020. We show her pictures of family activities & events - no recollection. 😢 #LongCovid #Christmas #crafting #LongCovidKids

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Sammie McFarland

@SammieFMc

2 months

When Kitty fell ill in 2020, uncertainty loomed large. Missing 2 yrs of schooling, she persevered, conserving energy for exams at home, pursuing a college education, & now preparing for finals with conditional offers from uni's. #Hope on💪 #LongCovidAwarenessDay

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Sammie McFarland

@SammieFMc

9 months

@bphillipsonMP Children have a right to in person learning AND they have a right to #health . Are you able to help campaign for #CleanAir in schools ? For this pandemic & future pandemics, our #children need #CleanAir & improved health & learning outcomes. #LongCovidKids

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Sammie McFarland

@SammieFMc

8 months

needed to continue my claim, so said I would continue. On his suggestion we agreed I wouldn't take the lift/carry test but would attempt the computer tests. He set up the computer and left the room. In some tests the screen flashed, this aggravated my cognitive symptoms

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Sammie McFarland

@SammieFMc

3 months

Finding it difficult to listen to @mariacaulfield talking about #COVID #PPE #Breathtaking on @GMB with @kategarraway @benshephard - yesterday we received this response from Maria to our letter to @RishiSunak . @drmarkfaghy @oonagh_cousins @joD66 @selkieO @Jane_Ryan_ #LongCovid

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Sammie McFarland

@SammieFMc

8 months

A powerful relatable article. 🙏 @kategarraway “One assessor told her: “We have a lot of experience with #longCovid . I bet you’ll find that he suddenly gets up and walks and is back to his old self in no time” #womensupportingwomen #carers #pwLC

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Sammie McFarland

@SammieFMc

7 months

It’s time to decompress & I plan to do exactly that. I have so much gratitude for @selkieO for saying what needed to be said & everyone who supported the #LongCovid Groups today in person & online today. Now I need 🛌 😴 #GiveUsHope #FridayFeeling #LongCovidKids #cocktails

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Sammie McFarland

@SammieFMc

4 months

My thoughts and prayers are with @kategarraway and her family at the very sad news of Dereks passing. May he rest in peace 💐 and the family find comfort and strength in each other in all moments.

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Sammie McFarland

@SammieFMc

1 month

A hard but essential decision for both @HelenMMGoss & I. 🏡 At opposite ends of the country, COVID aware & still unable to avoid reinfection. LCK’s original campaign called for #CleanAir & honest public health messaging- it remains as relevant in 2024 as 2020. #LongCovid 🙏

Long Covid Kids - #LongCovidKids

@LongCovidKids

1 month

A message from our board of trustees. Meet our members of the board here:

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Sammie McFarland

@SammieFMc

1 year

My daughter and I got COVID in 2020, we are both still living with #LongCovid . Our usual life has been on pause ever since, compounded by reinfection. The one useful thing I have been able to do is use our experience to raise awareness, thanks @Nat_E_Pearson for the nomination.

Long Covid Kids - #LongCovidKids

@LongCovidKids

1 year

If you think #LongCovidKids has helped raise awareness please vote for @SammieFMc in the #SocialMediaAwards . Awards elevate the work & visibility of charities. Although only 1 name goes forward this would raise the profile for our entire team. #LongCovid

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Sammie McFarland

@SammieFMc

2 months

Depending what you read or who you listen to - We pushed too hard. We didn’t try hard enough. We don’t want to get better. Eyes forward. Listen to patients. Find solutions. #LongCovid

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Sammie McFarland

@SammieFMc

10 months

How many parents, relatives and friends have become carers since the start of the pandemic? Does anyone know ? My husband has become a carer for both me and my daughter, on top of his full time job as a key worker. Sat in our surgery, this made me wonder. #LongCovid #pwLC

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Sammie McFarland

@SammieFMc

10 months

@BBCRadio4 Is there a BBC blanket rule to leave #LongCovid out of discussions on #Education / #Attendance ? Widespread transmission🦠= widespread infection🦠=morbidity 📣 🧠 🫀 🫁 🩸 #LongCovid is part of the picture. Ignoring it won’t make it go away. #CleanAir & #publichealth 📣 might

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Sammie McFarland

@SammieFMc

4 months

UPDATE: @HollowaySociety complaint upheld. My family wept when we received the news. The stress of fighting on top of dealing with #LongCovid has been insurmountable. I never expected to be ill or to be treated like a fraud for becoming ill. #IncomeProtection #FormHealth

Sammie McFarland

@SammieFMc

4 months

UPDATE On the 16th Nov 23, the #ombudsman assessor found that @HollowaySociety had not acted fairly, but #HollowayFriendly refused to accept that assessment. The case was then referred to an ombudsman to look at everything that’s been provided and make an independent decision.

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Sammie McFarland

@SammieFMc

7 months

Sending love, respect and gratitude to everyone who made it the @covidinquiryuk yesterday. It was a tough day. #feetup We can’t press pause on #LongCovid , no matter how determined we are. #CommunityUnity @merelpianist @ClaireHastie1 @selkieO @JoD66 @ShaneyWright #LongCovidKids

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Sammie McFarland

@SammieFMc

7 months

It's been three years for my daughter, and her college still doesn't understand #LongCovid 😢 We hope the LCK Educational Toolkit will help all children have a more positive experience at school. Thank you to everyone who made this possible. #LCKToolkit #LongCovidKids #Education

Long Covid Kids - #LongCovidKids

@LongCovidKids

7 months

It's LCK Educational Toolkit launch day! 1 An Introduction to Long Covid in Children 2 Returning to Education with #LongCovid 3 The Impact of Long Covid on Education and the Family 4 Supporting Children with Long Covid in the classroom #LCKToolkit

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Sammie McFarland

@SammieFMc

7 months

When we made this my daughter & I were unable to sit up and eat at a table or manage daily personal care without support. The GP was telling us to 'do more exercise'. We wanted to stop other families from having to develop #LongCovid It is as powerful today, as then 😷🦠

Long Covid Kids - #LongCovidKids

@LongCovidKids

7 months

Three years ago while #LongCovid was being denied and ignored, despite available evidence @LongCovidKids families came together to make this made this awareness video advocating for CYP injured by #COVID . 3 years on, children are still sick. #LongCovidRuinsLives #LongCovidKids

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Sammie McFarland

@SammieFMc

7 months

We knew our children were being #disabled . Nobody listened, nobody acted and more and more children followed in their footsteps. Long Covid is preventable @BorisJohnson Why didn’t you listen and prevent it? #LongCovidKids #LongCovidRuinsLives

Long Covid Kids - #LongCovidKids

@LongCovidKids

2 years

What would you, the children and the families say to those who say Long Covid is in their head? @SGriffin_Lab @IndependentSage “Listen to the children” Sammie McFarland #ListenToTheKids #LongCovidKids #LongCovid #MECFS #PANS #POTS #PIMS

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Sammie McFarland

@SammieFMc

8 months

@BBCPolitics I just can’t understand why the 62000 CYP with #LongCovid are never mentioned in discussions on attendance. They aren’t school refusers or truant & they weren’t #SEN . @LongCovidKids & @DerbyUni #educacion survey findings were clear. #LongCovid impacts attendance @DrMark_Faghy

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Sammie McFarland

@SammieFMc

5 months

It’s 👌 to go SLOW. As the adverts for exercise ramp up, it can feel mentally tough for those of us living with #LongCovid , esp 4 those who were fit/active b4 If you’ve had #Covid , haven’t yet recovered & think u might have #LongCovid Be kind to yourself. Rest. Pace. #Pacing

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Sammie McFarland

@SammieFMc

3 months

🙏 to @JoFroggatt for wearing a #LongCovidAwareness ribbon on the @BBCTheOneShow Risks continue, even through testing has stopped. My daughter & I are still living with #LongCovid almost years on. It would be wonderful if we could prevent more cases.

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Sammie McFarland

@SammieFMc

3 months

@scotgovhealth @jenni_minto We should encourage everyone, especially woman who are so often ignored, to listen to their body, seek support and treatment. Messaging that would have been woefully disappointing in 2020, in 2024 it’s shamefully inappropriate/inadequate/misleading & harmful. #Gaslighting

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Sammie McFarland

@SammieFMc

7 months

The reason we started sharing our story was because we thought it might help other people. Later it was because we needed help & needed to find solutions. It makes me so 😡 that we needed to do it at all. #Accountability #LongCovid #LongCovidRuinsLives

'My Covid hell': Long-suffering mum wants answers as ordeal continues

A Weymouth woman's fight against long Covid has been going on for three years and has been raising awareness to the seriousness of the disease

www.dorsetecho.co.uk

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Sammie McFarland

@SammieFMc

8 months

“By combining health records with school absences, the study found that schools that had these relatively low-cost air cleaning technologies fitted showed significantly lower absence rates” #BreatheHealth #CleanTheAirWeShare @Jane_Ryan_ @covidinquiryuk #longcovidkids

Long Covid Kids - #LongCovidKids

@LongCovidKids

8 months

Confirmation that #HEPA filters in schools improved absence rates. #CleanTheAirWeShare #ClassACT @CathNoakes @CRBoxFoundation @GillianKeegan @NEUnion #CleanAir #CleanAirSavesLives #Bradford #LongCovidKids #teachertwitter

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@SammieFMc

8 months

"If I said my child has cancer, people would understand, but her quality of life is akin to someone with that sort of level of illness." Fully resonate with Sophie’s mums comment. It’s one that is often heard in the @LongCovidKids 😞 support service. #LongCovidKids #LongCovid

Long Covid Kids - #LongCovidKids

@LongCovidKids

8 months

🇦🇺 “Sophie was a very normal, functional 13-year-old girl, on the cusp of teenagerhood, and she's been unable to attend school for a year and a half." #LongCovidKids #LongCovid

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@SammieFMc

7 months

Months of dedication and spoons it's finally out. The @WHO_Europe non digital leaflet for adolescents is ready to download in English and Russian. Grateful to have been able to assist development. #LongCovid #LongCovidKids

Long Covid Kids - #LongCovidKids

@LongCovidKids

7 months

We welcomed the opportunity to work on development of this @WHO_Europe leaflet for adolescents. Reviewed by #Long Youth Advisory Panel (YAP) #LongCovidKids #LongCovid @SammieFMc @Occ4LifeLtd @LongCovidSOS @long_covid @LongCOVIDPhysio

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Sammie McFarland

@SammieFMc

3 months

FACT #LongCovid is a significant contributing factor to long term sickness. Prevention. Planning. Preparedness. #CleanTheAirWeShare with air filtration Track #COVID & #LongCovid Plan & prepare appropriate services. #ResearchLongCovid #TreatLongCovid

Lord Bethell

@JimBethell

3 months

Gobsmacked by huge 200k upward revision of long-term sickness numbers by @ONS . Overall picture is emphatic. Britain is too sick to work productively. The economic hit will be HARD. @hmtreasury will be gutted. Mandarins! We need to address our underlying health! Urgently! 1 of 5

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Sammie McFarland

@SammieFMc

7 months

Dear @ChildrensComm @GillianKeegan please listen to this young person's message. It perfectly represents the experiences of the CYP we meet every week. I am beyond disappointed that we have not had the opportunity to discuss their needs and that your reports ignore this cohort.

Long Covid Kids - #LongCovidKids

@LongCovidKids

7 months

"Please take notice of me, please acknowledge that I am there, & what an achievement that is, do not just ignore me, I already feel invisible to the world, do not berate me for not staying as long as you would have liked or planned" YP age 16 #LCKToolkit

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Sammie McFarland

@SammieFMc

4 months

So proud of these resilient young women for raising such important points in their essay. They worked hard on this over the summer. “Being chronically ill is not exclusive to being an adult” #LongCovidKids #LongCovid

Long Covid Kids - #LongCovidKids

@LongCovidKids

4 months

Congratulations to members of our Youth Advisory Panel (YAP) Sanjana & Eden on the publication of their essay in the @TheLancet ‘Children and young people with Long Covid: overlooked and neglected’ #LongCovids #LongCovid #COVID19

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Sammie McFarland

@SammieFMc

8 months

@CRAE_official @savechildrenuk @Justforkidslaw @annelongfield It is very disappointing that children directly harmed by #COVID19 were excluded from this report. I met with @annelongfield in Sept 2022 to discuss @LongCovidKids and she offered to do anything she could to help #longcovidkids

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Sammie McFarland

@SammieFMc

4 months

@bphillipsonMP @bbclaurak Were parents also asked why they think it’s okay? that seems important Families are very aware that classrooms need clean air in this ongoing pandemic. Is air filtration something you are considering to help reassure parents? #CleanAir #LongCovid #LongCovidKids

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