Chandler is only 23
3 months after
#COVID
in Dec 2020 she went to A&E with numbness in her hands
Her symptoms were dismissed as anxiety
“I was told to move along, so I left"
She has now been diagnosed with multiple ischemic strokes, caused by inflammation
Hundreds of doctors are planning to sue the NHS over claims inadequate PPE on the frontline has left them with
#LongCovid
, disabled, and in financial ruin.
#LongCovid
does not discriminate. People of all ages and backgrounds have had their lives and careers robbed from them by this disease. A 🧵 highlighting some younger people with
#LongCovid
.
A combination of 2 vascular biomarkers can identify
#LongCovid
with 96% accuracy according to this study
Both ANG-1 and P-SEL are related to endothelial injury
Authors suggest angiogenesis (dev of new blood vessels) as a target for potential treatments
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
After earlier reports that
@robbiewilliams
has
#LongCovid
, we are saddened to learn that this appears to have been said as a joke.
We are sure that no-one would publicly claim to have other chronic illnesses in this way. 1/3
"Please don’t tell me I look well, or, even worse, tell me that you’re glad to see that I’m feeling better"
Our patron
@EmmaSamms1
writes poignantly about living with an invisible illness,
#LongCovid
A major barrier to the right care and diagnostics for
#LongCovid
had been the belief that
#Covid
is a respiratory disease
Is it not - it impacts all organs but in particular the vascular system
It is a 'blood vessel problem'
Study points to vagus nerve dysfunction as a central pathophysiological feature of
#LongCovid
Evidence of changes to the vagus nerve were observed, causing symptoms including dysphonia, dizziness, tachycardia, POTS and diarrhoea
"Right now there are thousands of staff who are deeply traumatised... staff who have been left severely disabled from
#LongCovid
and even now when we go into our hospitals we don't have proper PPE...that is a national scandal"
@doctor_oxford
spoke to
@skysarahjane
@SkyNews
🙏
David Putrino
@PutrinoLab
believes that politicians are starting to get scared by the extent of post viral illness
#unitetofight2024
But governments are yet to sit down and listen and take this massive issues seriously
#LongCovid
Six months after infection, neurocognitive deficits in working-age patients with
#LongCovid
found to be "of the same magnitude as intoxication at the UK drink driving limit or the deterioration expected with 10 years ageing"
Grim news
"Vaccination alone is insufficient to protect against the harmful effects of infection by the
#SARSCov2
virus ... this advice is now backed by research that suggests the risk of
#LongCovid
is higher on reinfection"
Primer on recent advice from
@WHO
A new highly contagious coronavirus variant is spreading rapidly throughout the UK with the number of cases rising
“Recognising Covid-19 symptoms can be tricky as they are very similar to that of the flu"
It's not flu season. Assume it is
#covid
and TEST
Today we found out that
@BorisJohnson
scrawled 'BOLLOCKS’ across a
@DHSCgovuk
document about
#LongCovid
He admitted in his witness statement that he didn’t believe
#LongCovid
‘truly existed’
We now know that he thought it should be dismissed as "Gulf War Syndrome stuff"
Great little print-out guide from
@UKPoTS
- perfect to give to your
#GP
if they say they haven't heard of
#LongCovid
#PoTS
before.
Includes advice on how they can give you a simple stand test to help with diagnosis.
📽️Fascinating treatment in Japan for inflammation of the epipharynx - claimed among other things to help restore function of the hypothalamus thus resetting the autonomic nervous system
Has helped with
#LongCovid
symptoms
Recommend watching to the end
Considering viral persistence has been found at two years, we agree with the call for more thorough testing of donors and donated organs before transplant:
"Long-haul flights where masking was enforced reported no transmission of SARS-CoV-2, indicating that masking could significantly lower aircraft-acquired COVID-19"
A clear no brainer - but relies on all passengers to comply
Mask up on flights! 😷
"She’s experienced gaslighting in such a catastrophic way that she actually disengaged with all services"
Kitty no longer has the cognitive ability she had before
#LongCovid
but received no special advice or support to address the gaps in her education
“Given we’ve got millions of leftover vaccines from the autumn booster campaign, why not try to put them in people’s arms instead of the bin?” -
@chrischirp
Seems negligent of JCVI and
@DHSCgovuk
to leave so many people vulnerable to
#covid
and
#LongCovid
We are completely delighted, overwhelmed and proud that Charlie, along with his family by his side, dad Tony and brother Howie have reached Everest Base Camp and achieved their Climb for Long Covid.
Thank you so much to Charlie for fundraising via his truly monumental feat.
Excellent information and set of infographics from
@YaleSPH
Thank you for sharing your knowledge
These should be seen by as many people as possible
H/t
@fitterhappierAJ
Individual images in 🧵
According to
@NHS
children with
#Covid
(advised NOT to test by
@UKHSA
) can go to school and spread it to other children who may have vulnerable family members, and to staff, who may also be vulnerable
Is this how to prevent the spread of a notifiable disease?
#LongCovidKids
"Patients with lower levels of taurine had a lot more symptoms, more of them were hospitalized"
The amino acid was also found to be a predictor for
#LongCovid
and could be a potential treatment - further studies are proposed
Latest
#LongCovid
prevalence figs from
@ONS
show a jump in numbers
♦️2.3 MILLION people in the UK have
#LongCovid
- 3.5% of the population - ⬆️15%
♦️1.8 million 12 weeks+
♦️More than a million have had symptoms for a year or more ⬆️23%
♦️514,000 have been unwell for 2 YEARS+⬆️20%
“Everyone wants a single biomarker, everyone wants a single treatment. That’s not realistic for long Covid.”
However the latest published research from
@PutrinoLab
@VirusesImmunity
offers concrete, biological evidence that
#LongCovid
is real
🧵Today Long Covid SOS launches a brand new GP leaflet endorsed by
@rcgp
Most people with
#LongCovid
are still unhappy with the knowledge and treatment options available from their GP according to our recent survey data
1/5
Heneghan is asked whether the existence of
#LongCovid
suggests the approach of the Great Barrington Declaration re 'letting young people live their lives" is flawed
He claims evidence for
#LongCovid
is not conclusive and cites 'recent research'
Hallett is not impressed
2/3
This damaging behaviour is heartbreaking for
#LongCovid
sufferers, who may feel isolated about their often-invisible but life-changing illness.
Did you ever consider the impact that your ‘joke’ would have on an already fragile community, Robbie?
The Robbie Williams story now picked up by MSM in thy UK
It is so important to get the message out there -
#LongCovid
can impact anyone including celebrities
So sorry
@robbiewilliams
that you're having to deal with this
Robbie Williams struggling with
#LongCovid
"If you look closely, you will see Williams suffering. Sit, lie down, walk instead of run, dance as little as possible; they are all self-sparing methods"
See screenshot below and in thread for the story in English
Long Covid SOS is now a registered charity!
Today is 2 years since we sent out our SOS and it all began with our
#messageinabottle
film.
Our advocacy for
#longcovid
is needed now more than ever
We are proud to mark this date by launching our new website
This Wednesday, 15th March 2023 is International Long Covid Awareness Day
Advocates from all over the world are gathering together to spread the word about the reality of
#LongCovid
Things need to change
#LongCovidAwarenessDay
#LongCovidAwarenessMonth
3/3
We would welcome the chance to talk to
@robbiewilliams
and his team about the truly stark and disabling impact of
#LongCovid
on so many lives, and ask him to back our call for recognition, research, and rehabilitation for
#pwLC
The retinal capillary system is representative of the entire human body’s microcirculation
Results of this study (preprint) suggest that changes to retinal microvascular circulation could be used as a biomarker for those with
#LongCovid
and fatigue
Researchers found those with
#LongCovid
had virus-specific T cell levels 100x higher than controls suggesting persistent virus or viral fragments
Antivirals may be a treatment option
Today we have written to Prime Minister
@BorisJohnson
to express our concerns that
#LongCovid
is not informing policy decision making. Action must be taken to prevent a detrimental impact on more lives
Read it here
@bmj_latest
thanks to
@Juliet_hd
The UK medicines regulator says Pfizer safe for over 12s
Over 12s being vaccinated all across the world
This sociologist say he & his JCVI committee will not allow it because Long Covid isn’t real. The 2m UK sufferers have ‘psychosomatic symptoms’
🧵The
@ONS
have published
#LongCovid
prevelence data from the Winter CIS
England+Scotland only
❗️2 million (3.3%) have
#LongCovid
❗️1.5 m adversely affected
❗️381k severely impacted
❗️71.1% have had symptoms a year or more
❗️51.3% 2 years +
❗️30.6% 3 years + 600k people
1/3
Special callout for the "Masks don't work 🤡" community
This study in schools shows that airborn
#SARSCoV2
decreased by 69% during mask mandates, 39% with air filters
Masks wearing cut tranmission by 80%
#LongCovid
#LongCovidKids
#WearAMask
"We found a consistent pattern of memory deficits in those that had experienced the COVID-19 infection"
Cognitive and Memory Deficits in
#LongCovid
: A Second Publication From the COVID and Cognition Study
#LongCovid
Universities of Stirling, Oxford & York research finds return to work policies unfit for those with
#LongCovid
Terms ‘able’ or ‘disabled’ are not helpful for people with Long Covid, which is unpredictable, has invisible symptoms, and varies in severity.
"Sometimes, I wake up with strong pain as if I had run a marathon, but I was only sleeping in my bed...this reminds me that I did not fully recover from COVID-19"
An immunologist’s reflections on nine months of
#LongCovid
Interview with
@stephanie200586
1 in 20 new diabetes cases could be linked to
#Covid
"If this is the case, it has serious implications for health systems around the world ... That might also mean having to take ongoing waves of Covid19 more seriously"
“Sadly on the long Covid front, it is fair to say that it has cancelled my life until further notice.”
Astronomer royal Catherine Heymans was “efficient, effervescent, and unstoppable” until she developed
#LongCovid
#LongCovid
"may be associated with disruptions to the menstrual cycle, gonadal function, ovarian insufficiency, premature menopause, and fertility problems"
More research is needed into the impact of
#LongCovid
on reproductive health
@patientled
#LongCovid
: The nightmare a million of us still can't shake off
Forecasters predict
#LongCovid
could cost the economy £10 billion a year and this is based on only 100k out of work. The full impact of
#Omicron
is still unknown
"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
@educationgovuk
@ChristmasRowena
@NHSuk
A fever is NOT the only sign of illness. Stomach upset and diarrhoea isn't even mentioned. If a child feels unwell but doesn't have a fever they shouldn't be forced to go to school and potentially infect others. Parents be the judges
Study finds that electrical stimulation can improve muscle perfusion and oxygen delivery and could support exercise intolerance in people with
#LongCovid
Results showed increased levels of oxygenated haemoglobin to the foot and improved muscle endurance
The only way to prevent
#LongCovid
is to avoid infection.
We alerted govt to the risk of allowing uncontrolled
#COVID19
transmission a year ago and this is the consequence
Now can we please have more investment into research and treatment?
"Many people with
#LongCovid
have organ damage 🫁🫀which hasn't been detected because they didn't get the right tests"
More research needed on those who weren't in hospital
Our Co-Founder
@selkieO
spoke to
@LBCNews
about data from the
@PHOSP_COVID
study
This preprint found that although children have milder
#COVID19
infections which clear faster than adults, their T-cell immunity, is not robust enough to resist reinfection.
So much for building herd immunity by infection in schoolchildren
#LongCovidKids
People with
#LongCovid
don't burn fat during exercise properly according to this paper
The suggests that muscles are not functioning as they should and could account for exercise intolerance
More research needed...
10.8% of civil servants report that they have
#LongCovid
, 7.4% adversely impacted - it's the 4th leading cause of long-term sickness
Lost working days have risen by nearly 30%
If this impact on their employees doesn't concern the govt, what will?
Dylan has given up his dreams of becoming a doctor.
"I had to learn to live with this disability and grieve my old life. I had to accept I would not become the doctor I had dreamed of being"
#LongCovid
“Was it foreseeable to those of you who understand these things that there might be long term sequelae from covid 19? “
“it was foreseeable to us before the pandemic because of sars cov 1 & it was even more apparent to us early on in the pandemic it would be a potential problem“
Two million - 3.1% - in the UK with
#LongCovid
. Data from
@ONS
just published
🔸1.4m symptoms 12 weeks+
🔸826k unwell for 1 year+
🔸376k not recovered after 2 years
🔸1.4 million adversely affected
🔸398k severely impacted
🔸629k from Omicron wave
Time for changes to employment law?
‘Policymakers are starting to suspect the condition is a factor behind the labour shortages seen in the US and UK’
Piece in the
@FT
highlighting the impact of
#LongCovid
and other
#chronicillness
on working lives
Tolerating mass infection in the hope that it won't lead to mass hospitalisations ignores the huge risk of mass disability. Excellent thread illustrating how policy makers in certain countries including England are continuing to get it wrong
#LongCovid
Here is our statement in response to Rishi Sunak’s ‘full-on assault on disabled people’ as
@guardian
described it
The system blames and fails us in equal measure, but we will continue to address these injustices and do our best to campaign against them and advocate for change.
Even mild
#Covid
linked to heart disease and strokes
'The researchers said the burden of heart disease caused by Covid-19 was becoming “a dominant public health concern”'
Why is there no public health messaging so people understand their risk?
#LongCovid
#LongCovid
resolves in a year?
This may seem to be good news for some with more recent infections, but sadly 1.2 million in the UK have not recovered by 12 months according to
@ONS
95% were not hospitalised
670,000 are still unwell after two years
"I've gone from climbing mountains to not being able to feed or wash myself.
The biggest struggle is that there is not a clear end and it isn't a disease we can treat."
@alexis___me
describes how
#LongCovid
has left him bedbound
#TreatLongCovid
Our KC Anthony Metzer speaking now
@covidinquiryuk
"People with
#LongCovid
deserve answers and deserve to know what the government knew about this pernicious disease and what steps if any it took when confronted with the reality of huge numbers of people not recovering from it"
"As the death of Derek Draper and the grief of his family should remind us,
#LongCovid
is an especially cruel disease, and one that we should be far more concerned about... we need more research into long Covid, and an end to unhinged conspiracy theories"
Researchers are warily watching for the worst: a potential connection between
#LongCovid
and cancer
Viral infections are thought to be responsible for about 15% to 20% of cancer cases globally
Sobering reading
"People who had had
#Covid
were performing less well, particularly in executive function.”
Strange isn't it how we're told
#LongCovid
doesn't exist and it's just like the flu?
Yet after each infection - even mild - we are all measurably losing cognition
Tomorrow, Wednesday 15th March is the first International Long Covid Awareness day
Advocates from all over the world are uniting for better recognition of
#LongCovid
Things Need to Change
#LongCovidAwarenessDay
We’d just like to say we’re incredibly proud of the team over at
@LongCovidKids
, and of all those kids who went to
@10DowningStreet
. The bravery they showed today will be remembered.
In the UK we are moving towards 2m people with
#LongCovid
Figures released today from
@ONS
:
♦️1.8M have
#LongCovid
- almost 3% of the population
♦️1.3M are 12 weeks +
♦️791,000 have had symptoms for a year or more
♦️235,000 have had
#LongCovid
for two years+
Emily Mason
@LCEducatorsUK
“We were told to ‘go into schools, carry on keeping the country running, children have to be in school’. And we’re hung out to dry now when so many of us can’t work,” she said.
"There is the sense that something is going on in America that we're not addressing...to all those who are dealing with
#LongCovid
: we hear what you're experiencing, we take it seriously"
@BernieSanders
🧵Today, Boris Johnson, when faced with the document on
#LongCovid
upon which he had scrawled 'BOLLOCKS' said:
"I regret very much using that language and should have thought about the possibility of future publication"
No regrets about dismissing a disabling condition?
1/3
Read our statement in response to yesterday's announcement that all
#COVID19
restrictions will be scrapped
"We risk condemning hundreds of thousands more previously healthy and economically active people to a debilitating long term illness"
More on how
#LongCovid
affects the brain from
@VirusesImmunity
&
@michelle_monje
♦️6 ways: Neuroinflammation, infection, autoimmune response, reactivation of latent herpesviruses, microvascular/thrombotic disease and pulmonary/multiorgan dysfunction.
It's 3 whole years since we released our
#messageinabottle
film
It has since had hundreds of thousands of views on different platforms
We're glad that some people featured are now recovered but many are not
Things - still - need to change
#recognition
#research
#rehabilitation
#LongCovidAwareness
Day is fast approaching
Please keep supporting us in this cause
🪧 Share our images in the wider community
💬 Talk about your
#LongCovid
whenever you can
🫵🏼 We need YOUR help to make Long Covid something everyone is aware of
❤️🩹 Share your stories with us
📢 Join us in making a difference! The Long Covid Groups are taking center stage at the Covid Inquiry Hearings today. We refuse to be forgotten, unheard, disbelieved, isolated, unemployed, disabled, or immobile.
#LongCovidLivesRuined
#LongCovidRuinsLives
#WeNeedAnswers
We are deeply saddened by the news of Derek Draper’s death
Kate Garraway has been a hugely important voice in the mainstream media highlighting the very real danger that a Covid infection poses
@selkieO
#LongCovid
for many people is a serious condition
Long Covid must be recognised as occupational disease, says BMA
@amyismall
describes how she lost her job as a doctor after suffering from
#LongCovid
for 6 months, having caught
#COVID19
at work
"The government has airbrushed long Covid"
@CNagpaul
Robbie Williams struggling with
#LongCovid
"If you look closely, you will see Williams suffering. Sit, lie down, walk instead of run, dance as little as possible; they are all self-sparing methods"
See screenshot below and in thread for the story in English
After just 3 songs, Robbie Williams leans on his knees for support. The band has just started the 4th song, but he tells them to stop.
"I'm fucked," he says out of breath. With a boyish look at the audience: "It's
#LongCovid
. Not my age, you bastards!"
Study evidenced organic alterations along the vagus nerve in people with
#LongCovid
May suggest evidence for future studies to investigate & lead to therapeutic interventions
“There are so many invisible disabilities that people don’t understand: “You don’t look sick.’ Yes, that’s because you’re seeing me at my most energetic! It’s like living an Instagram life, you’re always projecting the best bits & hiding everything else.”
Research suggests that reactivation of other viruses such as herpes/EBV/CMV may play a part in the development of
#LongCovid
Study found high EBV levels in 73% of participants with
#LongCovid
compared to 10% in controls