Sammie McFarland
@SammieFMc
Followers
2,442
Following
2,723
Media
487
Statuses
7,032
Founder @LongCovidKids , & wellbeing coach on pause. “Learn from yesterday, live for today, hope for tomorrow. The important thing is not to stop questioning.”
England, United Kingdom
Joined May 2023
Don't wanna be here?
Send us removal request.
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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
/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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In a passionate speech, Violet Affleck calls for mask availability,
#airfiltration
, & Far-UVC light.
Drawing from personal experience, she emphasises the limitations of medicine in addressing post-viral conditions.
Way to go
#VioletAffleck
💪🏽
@BenAffleck
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401
2K
Hi
@DailyMailUK
, my daughter isn’t terrified of 🦠 - like all individuals 🌍 who understand infection control & airborne 🦠- she assess each situation & acts accordingly.
These teens are smart cookies.
Proactive
#HealthCare
! 💪🏽
#VioletAffleck
#LongCovidKids
#YallMasking
Both the 💪🏽 young women in this article have
#LongCovid
When Kitty read the article today she said “I wanted to get across that I shouldn’t have to wear a mask so that I can go to
#uni
. I talked about the lack of
#ventilation
in lecture halls etc. I don’t want to wear a mask, but
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1K
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2K
Both the 💪🏽 young women in this article have
#LongCovid
When Kitty read the article today she said “I wanted to get across that I shouldn’t have to wear a mask so that I can go to
#uni
. I talked about the lack of
#ventilation
in lecture halls etc. I don’t want to wear a mask, but
40
209
1K
In the
@MailOnline
Experts today labelled the findings 'convincing evidence' that kids are not 'faking it' and warned, 'we will need to be prepared to deal with it for a generation'.
#LongCovidKids
#LongCovid
#VioletAffleck
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“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
9
285
747
🧵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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241
683
This is a public health crisis for children,” Dr. Rachel Gross, an associate professor in the Departments of Pediatrics
#LongCovid
is a “public health crisis” for children. Dr. Dean Blumberg, chief of pediatric infectious diseases agreed!
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677
@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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599
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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476
there isn’t much choice in busy indoor spaces”
And-
“The
@MailOnline
mostly used
my words but they have been twisted, they haven’t said exactly what I said, & why didn’t they speak to an expert on
#LongCovid
or read recent
#Mask
#research
,
@WHO
recommend masks!”
#VioletAffleck
4
45
376
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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59
365
"it's hard to get people to believe you as well because they can empathize with something they know is there. 'Oh, you have a broken leg, I can see that. Wow, you can't walk. That must be tough.' But, your head hurts? 'I don't see a big bulge on your head. I don't see bandages “
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110
366
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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140
352
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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A 17-year-old girl who thought her tics had started due to a recent “nasty cold” suddenly had her life “put on hold” when she was left unable to walk or talk and suffering almost daily seizures.
#LongCovid
#LongCovidKids
#Neuro
#tic
#FND
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82
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I sincerely hope this isn't correct.
Violet is informed,
@LongCovidKids
would be delighted to have her on the team!
It is great that she is taking action.
#VioletAffleck
#Masks
#LongCovid
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The burden of Long Covid on children & young people is significant. Accurate representation is the very least young people can expect.
Please see these recommendations for reporting on
#LongCovid
in children & young people.
@ChloeConnor7
@Dr2NisreenAlwan
4
62
279
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
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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270
Thank you to
#TrishaGoddard
on
@GMB
with
@richardm56
asking the question nobody asks
“I wonder how many of these people (
#MECFS
,
#LongCovid
) are included in the unemployment figures?”
#MaeveInquest
#ThereForMe
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As a Mum & patient advocate I feel so proud to see these young women advocating for themselves and the Long Covid community.
To the
@MailOnline
and anyone else who needs some CPD please see 👇 from
@trishgreenhalgh
et al.
#LongCovidKids
#LongCovid
#MaskUp
Pinning two major papers here:
Our Lancet review of
#LongCovid
And our state-of-the-science review on masks
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1
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263
“Your body just totally fails you,” she said. “I was in peak physical fitness then just had to start living day by day, feeling trapped in my body, just willing it to do what it used to do.”
Nice job
@oonagh_cousins
#LongCovid
#MECFS
#LongCovidKids
#ThereForME
I recently spoke to
@thetimes
about my experience with Long Covid,
#ThereForME
campaign and the extremely damaging stigma surrounding chronic illnesses.
Thank you very much
@eleanorhayward
for this piece and your work covering this issue.
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Discussing
#FLiRT
on
@thismorning
Angie rang in. She tested + last night, what’s the latest Covid advice ?
First Q from
@DrZoeWilliams
Why did you do a test, cos we aren’t testing now 🤔
Later
@AlisonHammond
asks for clarification
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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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232
"I don't socialise any more, I can't physically do much actively, so I don't go to the gym any more, I don't go out and basically, I am housebound."
#LongCovid
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230
@educationgovuk
Clean air would be a great start - combined with specific public health campaigns.
When can we expect investment and guidance from
@educationgovuk
?
Or clear info from
@UKHSA
?
🙏
#LongCovidKids
#CleanAir
#LongCovid
5
41
230
“The kids were correct all along”
The voices of children must be listened to, and acted upon NOW & in the future.
Infections & reinfections continue.
#LongCovidKids
#LongCovid
#CovidInquiry
@Jane_Ryan_
@LongCovidKids
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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
15
43
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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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"Children were clearly less sick in daycare centres where air purification devices were used — down by around 30 percent," Sanmark explained.
#CleanTheAirWeShare
#LongCovidKids
#CleanAir
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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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US scientists found
#children
were left with prolonged symptoms 'in almost every organ system' after being struck down with the virus — a phenomenon now better known as
#LongCovid
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The above article highlights the importance of our paper 👇 led by
@ChloeConnor7
which makes recommendations for journalists.
‘A Critical Analysis of UK Media Characterisations of Long Covid in Children and Young People’
Words matter!
@Dr2NisreenAlwan
2
43
183
“The levels are very high. They’re the highest we’ve ever seen during a summer wave.” It might be hard to think about, but we’re still in a pandemic and experts are warning against COVID-19 complacency in schools”
#LongCovidKids
#LongCovid
#Back2School
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“Long Covid is a complex condition that goes beyond physical & mental symptoms, affecting other parts of people’s lives including their sense of self & professional identity. This can then lead to experiences of social isolation.”
#LongCovid
#LongCovidKids
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76
174
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 🦠)
7
21
167
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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166
“We have compelling data that viral persistence is much more common than recognized which could have major health implications.”
@microbeminded2
#LongCovid
#LongCovidKids
#research
3
72
167
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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Please watch and share.
Dr
@BinitaKane
and Dr William Weir on
@BBCBreakfast
today. 27/08/24
Thanks
@ABrokenBattery
#LongCovid
#LongCovidKids
#ThereForME
Highlights segment about
#MECFS
on BBC Breakfast. Dr William Weir and
@BinitaKane
talk about the history of
#MECFS
how it has been psychologised and the frustrating lack of progress. There are now millions of patients with Long Covid and we have no treatments.
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904
3
64
159
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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Retweeting this out of sheer relief 😮💨
Over 4 yrs of 🥁 to see a headline that actually reflects what we continue to witness.
Let’s hope it doesn’t take the same length time to read about successful treatment.
Childhood is precious.
#LongCovidKids
#LongCovid
#ChildrensRights
In the
@MailOnline
Experts today labelled the findings 'convincing evidence' that kids are not 'faking it' and warned, 'we will need to be prepared to deal with it for a generation'.
#LongCovidKids
#LongCovid
#VioletAffleck
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938
4
51
151
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.
🚨 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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149
Dr says - Think to the next step - will the result affect your actions.
Dr - also says they only cost a couple of quid & suggest masking for a couple of days if around others.
@benshephard
wisely says Angie is being responsible.
Risk of
#LongCovid
not yet discussed.
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10
148
Check out this recent study
@DailyMailUK
which identified discursive practices in
#journalism
that contribute to epistemic injustice.
It’s a fascinating read.
#LongCovidKids
#LongCovid
4
32
149
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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8
146
“I want people to know I'm not just trying to get out of doing school or sport — I wish I could … I wish they understood I am just trying to save myself from being stuck in bed in pain for days afterwards."
Vivien age 12
#LongCovidKids
#PublicHealth
6
63
145
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
4
76
143
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
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28
143
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
"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
7
124
306
3
56
141
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 ☕️
Today
@SammieFMc
from
@LongCovidKids
spoke for
@long_covid
@LongCovidSOS
groups & others at the press conference following
@BorisJohnson
’s evidence
@covidinquiryuk
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65
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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
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
1
43
63
3
47
135
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
3
55
134
So it turns out these young women are smart cookies after all 😉
Who knew 🙄
#LongCovid
#YallMasking
#MaskUp
#LongCovidKids
Hi
@DailyMailUK
, my daughter isn’t terrified of 🦠 - like all individuals 🌍 who understand infection control & airborne 🦠- she assess each situation & acts accordingly.
These teens are smart cookies.
Proactive
#HealthCare
! 💪🏽
#VioletAffleck
#LongCovidKids
#YallMasking
122
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2K
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16
134
New research -
@SAMHEProject
Classroom CO2 levels were higher in schools with more pupils than their target pupil number.
Classroom CO2 levels were lower in fee-paying schools and those schools in wealthier areas.
#CO2
#CleanAir
#LongCovidKids
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133
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
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
1
37
71
4
62
133
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
“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
1
46
120
2
42
130
@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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31
129
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
3
17
123
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
7
51
125
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
2
29
124
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
1
5
123
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
.
9
77
121
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
3
52
115
A heartfelt 🙏 to all the families who have shared their experiences since 2020, put up with gaslighting, trolling, abuse and allegations. 💪🏽
I hope the
@covidinquiryuk
will consider the additional burden that misinformation causes those injured &
#disabled
by pandemics 😷.
5
22
120
“The results showed that children who had COVID-19 were at a higher risk of developing serious kidney problems later on, even if they had no previous
#kidney
conditions. This
#research
highlights the long-term effects of COVID-19 on kidney health in young people &
#LongCovidKids
2
63
116
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
3
16
116
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
1
6
115
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
2
15
114
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
"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
0
7
14
11
49
113
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
2
15
110
#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
5
8
113
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
3
14
109
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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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
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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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
@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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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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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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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.
“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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“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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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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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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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
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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#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
#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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“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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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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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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That this is necessary is an absolute scandal.
No child should be left without the healthcare they need.
Keep fighting
@HelenMMGoss
💪🏽 🫂
#LongCovidKids
#LongCovid
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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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
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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🧵 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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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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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
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The U.K. is currently blind to
#COVID19
It’s a
#SCANDAL
Please sign ✍️ to Restore COVID-19 wastewater monitoring in 🇬🇧
#LongCovid
#LongCovidKids
#WasteWater
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“A teenager who says she's been "coughed on, called names and physically intimidated" for wearing a mask in public wants people to understand why she chooses to cover up”
#MaskUp
#Masks
#LongCovid
Young reporter wants to 'mask in peace'
A teenager who says she's been "coughed on, called names and physically intimidated" for wearing a mask in public wants people to understand why she chooses to cover up.
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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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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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The tide is changing. It's heartening to see children no longer missing from discussions on
#LongCovid
.
I urge policymakers to grasp the impact of post-viral illnesses on the youth & strive for better
#health
&
#education
outcomes, paving the way for brighter independent futures.
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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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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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