Binita Kane
@BinitaKane
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#LongCovid interested Lung Doctor | longcovidclinic @howellmedicalgroup .co.uk | YouTube channel @LCCWYCD | Co-founder #southasianheritagemonth @SAHM_UK |
Manchester| England
Joined October 2012
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Pinned Tweet
On International
#LongCovidAwarenessDay
I want to offer a message of HOPE.
This is Jasmin Feb 2024, aged 13
✅One year of treatment
✅18 months of very slow self-directed increases in activity
✅ HRV tracking
✅Work on the autonomic nervous system reducing stress response 1/
After careful consideration, I have decided to go public with this 🧵My daughter Jasmin has had
#LongCOVID
for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb.
#longcovidkids
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After careful consideration, I have decided to go public with this 🧵My daughter Jasmin has had
#LongCOVID
for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb.
#longcovidkids
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I wanted to share a story of a patient I saw this week. Very fit man aged 52, previous marathon runner, suspected mild
#COVID19
March 2020. Extensively investigated by cardiology in 2020 for symptoms of chest pain, dizziness and struggling to exercise 1/
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Today,a colleague asked me about whether
#COVID19
can cause memory problems in a 5yr old. As conversation developed transpired his daughter has had complete behaviour/personality change since COVID + tires more easily. I mentioned PANS/PANDA. By the end of the conversation (1/2)
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I am determined that treating
#LongCovidkids
is not going to be just for those with the connections and money. We will NOT leave everyone else behind. I am working hard behind the scenes with an amazing bunch of people to try and kick start this research in the UK for children.
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Though everyone in the UK was very nice, all we had been offered were basic bloods and ‘physio’ (we know we can’t exercise our kids better). Normal tests do not mean there is nothing wrong. It means we are not doing the right tests and need to look harder.
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We have been back to Germany twice since, at great expense. I cannot tell you how brilliant it has been having a doctor who is willing to be curious and try different treatments. I cried the first time we met her, it was emotional.
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She was started on treatment and within 2 weeks started improving - energy levels, mood, school attendance, appetite, home tutor (who didn’t know she’s on meds) fed back big improvement in concentration/problem solving. WITHIN 2 WEEKS.
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he was in tears. They had been told it was ‘school stress’ and pushed down psychological route. He was grateful to know it could be pathological. How many more out there not in ‘official figures’. Feel 🤢 at what’s happening to this generation (2/2)
#longcovidkids
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She has continued to improve, but I feel has now reached a plateau, I would say 50% of former self, as opposed to 25%. So it’s definitely not a magic cure, but we'll take it. It feels positive doing something instead of nothing and gives us hope.
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Her fluorescent microscopy (left) showed very hyperactivated sticky platelets. Mine are on the right for comparison. She also had microclots and evidence of endothelial damage (but latter not severe). I believe she was the first UK child under 12 to have these tests done.
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The platelets and microclots show that her blood is 'hypercoaguable' - too sticky. These may be blocking up the very small blood vessels that allow oxygen into muscles and nerves, which could explain some of her symptoms. 'Fatigue' = tissue hypoxia? Autonomic dysfunction = SFN?
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@MamaBuckingham
Sorry 🙈
Bottom line: COVID causes clots, often on a level that standard tests are not picking up. There’s increasing evidence for complications from blood vessel disease/clots post COVID, but treatment and access to the right tests is lagging.
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Don’t get me wrong, she still has a long way to go, but this improvement has been HUGE after the 16 months of hell we have had. The drugs she is on are freely available in the UK, the research techniques of course exist here too which makes it extremely frustrating.
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He had been referred to Resp as non-urgent. It was a chance discussion that the appointment was expedited. He was walking around with PEs and RH strain! I am really concerned about the number of people with 'mild COVID' out there who may have undiagnosed thromboembolic disease 5/
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Also want to shout out to the
#MECFS
community or anyone who's has suffered post-viral illness. You have endured so much suffering. I'm sorry it has taken
#longcovid
to open the eyes of (some of) the scientific and medical community. Thank you for your support and help.
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There is mounting evidence that COVID19 is a pro-thrombotic, vascular/endothelial disease. The question is, are the tests we are currently doing in
#LongCOVID
clinics good enough? If CTPA and lung function are normal, should we be looking harder? Do people have access to VQ? 9/
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Finally, I am so grateful to the brave and caring doctor in Germany who has treated Jasmin. Curiosity, compassion, care, determination to help. My daughter has a semblance of her life back. Also for those who facilitated it (you know who you are). I will keep you all posted. END
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Two years into the pandemic, with stories of thousands of
#lingcovidkids
, lives destroyed, teenagers self-harming with the impact, I can’t believe I am saying this. Where is the will from government and the paediatric community in the UK to pursue biomedical research?
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But I am not a paediatrician or researcher and have no guaranteed funding, so it’s an uphill battle. Despite this, we are very close to getting something off the ground. Individuals have been incredibly kind, helpful and generous with their time. Things are slowly coming together
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We need to move away from arguing about whether or not COVID harms children to finding solutions. Treatments for those who are ill, ways to protect children from repeated infection through cleaning up the air and better public health messaging. Enough now, it’s time to move on.
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However, at this rate it will take at least 2 years before UK children have access to same drugs my daughter is on, as we will need to prove the concept, then undertake a RCT. This is correct and proper, but could be accelerated if there was a WILL to make it happen.
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My husband is an EU migrant. I am the daughter of immigrants.
Dad & I have given 68yrs to the NHS between us.
When they talk about ‘other’ and ‘sending them back’, they are talking about my husband, my father, (me?)
Pls use your vote wisely. Don’t vote for division & hate.
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Still no outbreaks since January when we put HEPAs into my daughters’ Primary School. Spoken to another headteacher this week. Glad to see word spreading. Still hearing about lots of
#COVID19
chaos in schools. Let’s build the evidence for safe air!
#MakeSchoolsSafe
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I must stress that treatment should be under supervision and parents should NOT under any circumstances try treatments without a doctor overseeing it. I will not share what treatment my daughter is on (so please don’t ask). Again, it is not a cure, just part of the puzzle.
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Wow - this is incredible news from Italy 🇮🇹
A LEGAL requirement to put HEPA filtration in all schools 👏🏽👏🏽👏🏽
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This paper is a multi-national report of over 900,000 people indicating propensity of risk for arterial and venous thrombi is in men, with increasing age, and association with fatalities (4-fold in non-hospitalized) 7/
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None of this would have been possible without
@resiapretorius
and her pioneering work. This research is trying to fund itself internationally - if you can contribute the link is here;
Millions, including me, suffer from
#LongCovid
– a condition with debilitating symptoms but no current diagnostic test. I’m raising $5,000 to support Dr. Resia Pretorius’ research into an accessible method to diagnose microclots. Please donate or share!
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While certain UK paediatricians close ranks and defend a misguided (or guided?) trainee in promoting infection and reinfection of children with
#COVID19
as a means of building immunity, I would like to tell you the story of a young boy, who I will call Jack (not real name) 🧵
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Today is a bad day. Child no2 (the healthy one) on day 13 of
#Covid_19
, after initial recovery has got worse again.
Her sister is on month 10 of a living nightmare.
This is the reality of ‘living with COVID’ in children.
Please send some positive thoughts.
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On a microvascular level there is evidence of abnormal clotting and platelet hyperactivation. Why is it that the 'knowns' are not translating into treatment options? We know that dual anti platelet therapy & anticoagulation are effective in preventing vascular events 10/
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Surely we should be thinking about primary prevention of 'known' vascular and thrombotic complications? I worry for the people out there with
#LongCOVID
. The lucky ones will have access to the best care and treatment, but how many others don't? END/
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We also know that beyond the first 30d after infection, individuals with COVID-19 are at increased risk of cardiovascular disease spanning several categories, even in the non-hospitalised 8/
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It’s lovely and sunny here ☀️Not a swaying branch in sight. I have seen no personal evidence of the storm. Therefore it doesn’t exist. This ‘storm’ is probably in peoples’ heads. Risk to life? Overanxious. Fearmongering! Stop frightening people who just want to get on as normal.
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causing non-specific chest pain and SOB. This chap's symptoms were not alarming, in fact he thought it was all a bit of a fuss about nothing 6/
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Measles has a low risk of causing hospitalisation, death and long-term disability in kids. Imagine if we’d said there’s an effective vaccine, but we’ll withhold it, what’s a few kids here and there?’.
Yet many peddling this narrative for
#COVID19
, bizarrely a few paediatricians.
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In the absence of any other treatment, why are we not prescribing these drugs to people with
#LongCOVID
? With monitoring / risk benefit discussion of course. RCTs are not the only type of evidence. Real-world studies could be set up quickly via LC clinics 11/
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(Everything shared in this thread is with express permission from the patient.)
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On Friday Maya (aged 9) decided she would wear a mask to school. She was the only one, same on Monday. Today 2 other kids in the class came in wearing masks.
#thekidsaredoingitbythemselves
👍🏽
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Put him through the CT scanner, CTPA was negative for PEs but showed some possible right heart strain. I discussed this with some colleagues and given the desaturation we decided to perform a VQ scan. This showed extensive clots 4/
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It’s Mothers’ Day and I would like to say that I will fight until my last breath to get the children with
#LongCovid
the research and support they need.That’s a promise.
Sending strength to all Mums who are dealing with
#LongCovidKids
. We are making progress and will get there ❤️
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Another day, another conversation with a parent of a 10yr old child with
#LongCovid
. Prev healthy, horrendously sick. From clinical picture; PIMS, POTS, gastroparesis, encephalopathy, pericarditis - she’s been checked for none of these, but has seen a psychiatrist
#LongCovidKids
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Cardiac MR showed some fibrosis suggestive of previous myocarditis, but all other Ix were normal. By November 2021 he was back to running 15km, but very slow improvement. Dec 2021 had booster followed by COVID re-infection over a couple of weeks (again mild symptoms) 2/
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Schools Unions have written to The Secretary of State outlining an urgent need for a summer action plan to prevent a winter of disruption due to
#COVID19
in schools. Measures they are calling for are; 🧵
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After this he developed similar symptoms to 2020, dizziness on walking up stairs, chest pain (anginal sounding). We did his spirometry and gas transfer - completely normal. On the 1 minute sit-to-stand he desaturated to 92%, HR increased from 49 to 110 and he became quite SOB 3/
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What about children?
What about children?
What about children?
What about children?
What about children?
What about children?
What about children?
What about children?
What about children?
What about children?
What about children?
What about children?
#DowningStreetBriefing
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My 11yr old nephew had COVID in November, now +ve again. My bro just reminded me he’s unvaccinated as not eligible. I do really worry about repeated exposure of our kids to a virus that causes multi-system disease. When oh when will JCVI make a decision about vaccinating <12s?
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Taken 9yr old for her vaccine this morning, after waiting for this day for a long time.
NO STOCK.
So you can book an appointment online, but no vaccine when you turn up. Apparently difficult to get hold of.
What an absolute farce 🤬
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This. We are sleepwalking into a chronic health catastrophe. This will affect generations. The information and evidence we need is already there, we need to act on it. Denial is not a public health policy.
The general public doesn’t seem to know that Covid is airborne, that reinfection is common, that the vaccinated can get it, that Covid is a vascular disease with serious neurological complications possible, that
#LongCovid
is common and can disable anyone including the vaxed.
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In a pharmacy today. Only 1 out of 5 staff wearing a mask, surely not all exempt. It has to be one of the highest risk settings outside of hospital? Come on U.K., we can do better than this.
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It’s not until you or someone you love has a brush with disability to see how the odds are stacked against that person and what an ableist society we live in. I have gone my whole life blind to this reality (ergo I must have been part of the problem), now I see it everywhere.
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I cannot tell you how angry it makes me that the very people who should be protecting our children are promoting infection as a means of ‘building immunity’, whilst purporting to care about vulnerable children.
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God it’s been humbling to be a carer and experience the NHS from the other side.
#LongCovid
has shown me just how much our current ‘single specialty’ model of medicine is failing patients with chronic disease. I knew this before, but it’s hammered it home (1/4)
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By ⬆️ awareness of
#longcovidkids
, in the last week I have been told;
- I am fearmongering
- I should be struck off
- I should be put on trial
But if it can happen to my healthy child, it can happen to yours too and I think you deserve to know.
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A year on since I posted this thread that made 6 million impressions in a weekend.
Update: Jasmin is off all meds, started high school in September full-time (after 6 month’s treatment), 90% better.
We have first kids microclot/platelet study underway (1/2)
After careful consideration, I have decided to go public with this 🧵My daughter Jasmin has had
#LongCOVID
for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb.
#longcovidkids
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Of all the things I thought I would do in my career, I didn’t think it would be getting involved with cases of children being denied life-saving treatment, or very sick children being removed by court order from their parents due to ‘factitious illness and FND’ 1/
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I suspect I am overly sensitive/paranoid, but since my healthy 9yr old (the one without
#longcovid
) had COVID in September, she has quit athletics, swimming and dance - doesn’t want to do them any more (1/2)
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I remember at the start of the
#COVID19
pandemic sitting in the office with colleagues saying “We’re all going to get it aren’t we?” and knowing that some of us might die. But we cracked on regardless as we had a job to do. But our CHILDREN? Don’t do this to our children.
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If you watch one thing today, let it be this. The excess cardiovascular deaths, lessons from history, the stark warning from population health studies, ‘you wouldn’t know unless you seek this information out for yourself’- the most coherent messaging I have heard in long time ⬇️
Highlights Baroness Brinton speaking at the Long Covid debate in the House of Lords 17 Nov 2022. She describes a study that is only looking at psychological factors as "breathtaking".
#longcovid
#mecfs
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I wish the same paediatricians could walk for ONE DAY in Jack’s shoes and then spout the same nonsense on social media about how COVID builds immunity and letting it spread is a good thing.
It needs to STOP.
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Treating
#LongCovid
I’m struck by the similar vocabulary used by multiple patients independently to describe symptoms;
‘Feeling severely poisoned’
‘Internal vibrations’
‘Pressure at base of skull’
‘Small animal trying to scratch its way out of my chest’ - to name a few.
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My husband has tested positive for COVID this week. The mystery of the ‘gastro bug’ we’ve had has been solved…mine and J’s LFTs were neg, but husband couldn’t have got it anywhere else other than the house 1/
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Jasmin did her first full day in school since April 2021 and then walked home (it’s not far but still 🤩!)
She’s improving; Rx for sticky blood, probiotics,melatonin, mindfulness meditation, cold showers, better eating, pacing, resting.
Tough for an 11yr old, so proud of her 🥲
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Taxi driver yesterday as we lugged wheelchair into the boot we explained what it’s for;
‘What’s
#LongCovid
?’
If the public doesn’t even know what it is, how can they be aware of the risk and make decisions to protect themselves?
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Yes it does matter - 100 deaths per day is not ok, 1 in 20 kids sick is not ok, long term illness is not ok. Let’s learn from other countries.
@BBCNews
please stop downplaying the current situation.
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Does anyone have examples of their children being infected with
#COVID19
twice within a short space of time? These are not captured in any official ‘reassuring’ statistics. I’ll go first, my 11yr old nephew positive x2 in 3 months.
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The no. of posts from parents on the
@LongCovidKids
Facebook group saying their child has been diagnosed with ‘functional’ or ‘non-organic’ illness is making my blood boil 😡
Children don’t suddenly develop sx like headaches, seizures, pain en masse due to psychological reasons.
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Phone reminded me of this pic 1yr ago. Healthy, happy Jasmin with her sister. Yesterday the 3 of us sobbed after a tough day. Big relapse since COVID was in our house in October (from school).
This is living with
#LongCovid
. 1 year later - still no mitigations in schools.
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Spoke to headmistress at my kids’ school today.Minimal disruption since 2xHEPAs in every classroom. Steady stream of cases,most tracked to a parent. No spread within class, except one cluster of 3 children, but they socialise outside of school.We can move forward if there’s will.
THREAD: I keep being asked when we can go "back to normal" or "like it was before". My personal thoughts:
We've added a new disease to our population, more infectious and more severe than flu.
The world pre 2020 no longer exists - we may want it to, but it just doesn't. 1/13
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** Update**
Continued improvement over last 3 months. Just back from hols, she managed 2-3hrs of swimming a day (with rests in between). After a full day of travel yesterday, she managed to go out to a wedding. Her sickly pale look has gone. Dare I hope?? 😬🤞🏽
#LongCovidKids
After careful consideration, I have decided to go public with this 🧵My daughter Jasmin has had
#LongCOVID
for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb.
#longcovidkids
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The same individuals argue that ‘schools are safe’, do not promote clean air in schools, appear anti-mask and support not vaccinating children <12 against COVID i.e. they promote NO protection whatsoever.
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I am just so grateful for international community for supporting
#LongCovidKids
. I have faith that through a global research effort we can change things for our children.
It’s a sad place the U.K. is in right now.
END
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A colleague who I was on-call with yesterday has tested positive for
#COVID19
today. I had a long conversation in Resus with them. Luckily I was wearing FFP3, I do for all on-calls now. I am still in the minority with this practice. I’ll still be testing to be cautious.
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My hubby got up at 6am to shovel snow in the pitch black so I could get into work this morning. Mustn’t forget the sacrifices of the NHS HABs (husbands and boyfriends) during this pandemic!
#myhero
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Update on Jasmin. She went into school everyday last week for the first time (not full days). She’s taking part in the school production (!!) and is tolerating the noise of rehearsals. Over half term she managed a trip down South, we even went to the beach. Unthinkable 6m ago 🙂
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Just had a phone call from one of my Indian ‘aunties’ checking in on me and wishing me the best. She mentioned she’s thanking her lucky stars neither of her children became doctors. Well this is a first in the Asian community! 😂😂
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Another day, another conversation with a
#LongCovidKids
parent.
This time a 9yr old who has been sick since beginning of March 2022. It’s heartbreaking to see the kids from the Omicron wave coming through. This child struggling to walk, fatigue & brain fog.
Preventable 💔
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Some REALLY don’t like us talking about
#COVID19
harms in kids.
But (nearly) everyone agrees that;
1) Children are hospitalised with severe illness
2) Children do die from COVID19
3) Children get
#LongCovid
NB: There is an effective vaccine that can prevent 1 & 2 and ⬇️ 3
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A very fit (long distance runner) local resident died suddenly this week 😢. She had COVID 4 weeks ago.
There has been a spate of athletes with sudden cardiac death in last 2yrs. Is this on the rise? Anyone looking into relationship with
#COVID19
?
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Ten
#longcovidkids
wrote heartfelt letters to the Prime Minister.
This is the response?
#longcovid
is not a mental health diagnosis.
They need research, treatments and support with their education.
I’m so sorry kids.
15 mentions of
#mentalhealth
, 1 mention of
#LongCovid
This incredulous response demonstrates the ongoing need for our charity to be a voice for CYP impacted by
#SARSCoV2
.
#COVID19
#LongCovidKids
Read the email ⬇️
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2022 has been a year that has redefined my purpose in life and probably the rest of my career.
A promise to all those with
#longcovid
and
#MECFS
that 2023 will be dedicated to changing the narrative, research and treatment.
Thanks to everyone who has supported me this year ❤️
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‘The Lancet has published a study finding that schools are “chronically under-ventilated”, impacting children’s health and concentration.’
Scottish study.
HT
@VirtuaSam
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Omicron sub-variants ‘evolving to target the lungs and overcome immunity’ - not good news. Admissions rising in all age groups
#covid19
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This summer (after >2 years of disability) with support from me, the family scraped together savings and travelled to Germany. Jack had confirmed microclots, endothelial damage and hyperactivated platelets. He was started on treatment. Within 2 weeks he was dramatically better.
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Well done Ireland. Great public health messaging about protecting others 👏🏽👏🏽👏🏽
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He seemed to be a ‘super responder’. Here is the message his Mum sent me, we both cried with joy 😭
(Please note, this is not the experience of all children treated with the same drugs).
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**Calling adults with
#longcovid
**
If you are not on antiplatelets/anticoagulants and are willing to travel to Manchester to donate blood to help us develop microclot testing, please DM me and I will send you details.
#teamclots
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Yet another colleague on extended leave due to
#LongCovid
. The failure to consider impact of chronic illness in adults & children on our schools, economy & health service in pandemic management, has been an unmitigated disaster. We will be paying for this for a very long time.
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My daughter’s school has been amazing, they are even supporting the building DIY filters, but not everyone is this lucky.
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I’ve fixed the headline ‘Headteachers continue to protect children and staff by following basic public health principles’.
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Had 2 patients in the last week who developed menorrhagia with
#longcovid
(one post-menopausal, she bled with each infection and vaccination). Serial scans in both have shown fibroids increasing in size over 2 yrs. one now waiting for surgery.
Anyone looking into this?
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Then in October 2022 he was reinfected with COVID. The school he attends has no COVID mitigations and have been sending pupils and teachers back into class with COVID ‘if feeling ok’. Jack has had a severe relapse with new symptoms which thus far has floored him again.
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Some are also in bed with right wing lobbyists such as Vinay Prasad and Us4Them. They have a significant influence over UK policy.
As many of you will know, the
@RCPCHtweets
have declined our offer to meet with families and will not issue a statement on Long COVID in kids, WHY?
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I’m utterly horrified at what is happening to some children with
#longcovid
. History repeating itself - this has happened for decades to kids with
#MECFS
. These kids desperately need care and treatment.
When will the medical profession wake up? 2/
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Adding a third tweet..!
The constant concern about school and re-infection is awful (2 cases in her class now) plus the fear of 11yr old being reinfected. We are now so limited in what do. It’s awful out there for CEV people or anyone living with
#LongCovid
#LongCovidKids
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I have family consent to share his story. Jack was previously healthy with no underlying health issues. He developed typical COVID symptoms in Apr 20 aged 9, and never recovered. After 18 months of being unable to tolerate an upright position, he was finally diagnosed with POTS.
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For every 1 person who chooses to minimise the impact of
#COVID19
illness on children, there are 100s of parents, teachers, scientists, HCPs & members of the public who understand how horrific it can be for young people. We will continue to be your voice ❤️
#LongCovidkids
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Feel quite emotional saying that Jasmin has had 100% school attendance this half term, none of us could have predicted that a few months ago.
Treating
#longcovid
, vaccination, HEPAs in classrooms (& educating her open windows if no HEPA) has got her back to school safely 🧵
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