Thread by @KatiaKerswell

#longcovid @IndependentSage 🇬🇧 highlights

@amibanerjee1 @drclairetaylor @BinitaKane @trishgreenhalgh @DeenanDpillay @Kit_Yates_Maths @sheencr @Daltmann10 @ReicherStephen @SusanMichie @SGriffin_Lab @ArisKatzourakis @Zubhaque

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@DeenanDpillay ‘living with’ — a major consequence of allowing #covid to circulate: #longcovid

‘Allowing covid to circulate has major & ongoing long term adverse impacts on the way we run society eg over 10k #NHS frontline workers off sick to acute & long consequences’

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@Kit_Yates_Maths
- enter a countrywide 🌊 *3rd in 6 months* & rising prevalence now 2% in all ages (worryingly high in 50+ maybe as no 2nd booster & >70s more at risk) & 30% sharp rise in hospitalizations in different age groups
— hints of increased severity (int care)

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Caveat: ‘more ‘with’ covid than ‘for’ though may underlie some of the ‘with’ figures… can be hospital acquired or 2nd diagnosis such as stroke —> *but may be induced by #covid*
- slight uptick in mechanical ventilation suggests increased severity

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Hospital Key Performance Indicators report this week —> doesn’t make headline news but #NHS is in serious bother in many ways —> ‘blocked pipeline’ affects all services

Wait times alarming: patients dying —> must fund better

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Healthcare Safety — so concerned they issued early report (as aren’t meant to report until later in the year) on #NHS crisis

See

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#longcovid 🇬🇧

~2 million (1 May) worrying rise in impacts (little to much) across society, significantly greater in most deprived communities, as we allowed transmission

—> can see outcome of each wave, harm by variant #Omicron highest!

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New: Children — @ONS report

—> 235k kids fulfill all criteria for #longcovid

⚠️ ~2% primary children & ~5% secondary is a lot

@LongCovidKids

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#longcovid panel

@trishgreenhalgh

- #longcovid is a patient defined term for symptoms 4 or 12 weeks past infection

—> lots of symptoms can overlay baseline of extreme fatigue eg
brain fog 😶‍🌫️ can’t remember or use higher mental functions; palpitations, heart symptoms

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Symptoms:

1) Top bar — cardinal feature most people get is FATIGUE, general feeling of complete exhaustion; inability to exercise (poor exercise tolerance) & post exercise symptom exacerbation (immediately after or next day ‘crash’) is very typical of #longcovid

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2) Body of slide — shows extra symptoms e.g. some have altered breathing, symptoms in their guts or allergic rashes
—> fluctuates, relapses & remissions ‘boom & bust cycle’ —> you think you’re getting better, go back to work for a couple of days then in bed with same exhaustion

@drclairetaylor runs a #longcovid clinic:

1) 10-30% have #POTS (postural tachycardia syndrome) —> when stand up ❤️ rate shoots up. Ten minute stand test finds *pulse normal at rest at 70 when stand up it’s 160* —> dizzy, sick, must sit —> must test everyone!

@UKPoTS helps!

2) Also see a lot of new rashes, urticaria, itching & flushing gastrointestinal symptoms —> Mast Cell Activation Syndrome #MCAS is a condition we don’t know much about —> aberrant immune response, mast cell produces histamine which causes symptoms in any system of the body…

Doctors should check:

1) blood, liver, autoimmune diseases, cortisol to ensure not missing anything other than #longcovid, chest X-ray, ECG for palpitations — *ten minute stand test for POTS is the most important* — nearly half your patients’ pulse almost doubles if they stand

2) patients can self-check with a blood pressure monitor — cardiologists should manage #POTS (but don’t always) & generalists can give beta blockers as a first line of treatment

—> need better education of generalists & specialists

(@trishgreenhalgh is preparing something)

@BinitaKane

‘#longcovid conditions not well understood by many doctors as they’ve suddenly exploded in how common they are — we haven’t got the education or the awareness right. @drclairetaylor shows you can do this in primary care with the right knowledge & skills…’

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@amibanerjee1
— *we’re increasing long term problems* only thing we know works is *to avoid #covid which we’re not doing at scale*
💉 no panacea

—> must streamline services across country & disciplines (cardiology, respiratory, gastroenterology *all look 👀 out for #longcovid

What long term impacts?

@amibanerjee1 we lack insight into any one pathophysiological mechanism eg ?

- inflammation of blood vessels —> why so many organ systems & rise in heart attacks, strokes, diabetes?
- mast cell activation, microclots?

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What state of research?

- many studies (eg NIHR funded, Stimulate ICP) but slow process/lack prioritization of chronic disease & fewer staff also to #longcovid
—> should speed as a priority large scale problem + gives insights into treating other systemic/chronic diseases

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@trishgreenhalgh Locomotion study so
- *every #longcovid clinic in the country delivers current best practice*
- people self-manage & monitor their symptoms with technology & checklists
- crucial collection/registry of data to categorize symptoms & treatment
⚠️ prevent; no cure

Public Q&A
- biomarkers to prove #longcovid esp after delay?

@amibanerjee1 @drclairetaylor
- no as don’t understand unifying mechanism; fluctuations challenging — need trials & to act fast
- frustrating tests normal!
@BinitaKane best is to believe esp children…

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- frustration at slowness of research into new diseases in this country when lots of leads eg on viral persistance —> need doctors to follow this science

- @trishgreenhalgh you can try antihistamines etc but *try one thing at a time, keep a diary to record symptoms*

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Blondine of @LongCovidSOS:

‘some people get #longcovid on reinfection, will infections several times a year erode our health esp those already suffering #longcovid?’

@Daltmann10 how reinfection contributes to the unknown cause of #longcovid is even more difficult but critical

@SGriffin_Lab outcomes come from 🦠 your immune status & environment. All three in flux still why we have these waves, why different symptoms & outcomes from disease.

So it’s really difficult & like rolling a dice. Need to understand more & reduce ridiculous levels of infection

@trishgreenhalgh is working on summaries for busy doctors to know what to test for & attitude eg believing this is a biological disease regardless of biomarkers

@drclairetaylor *document everything* (covid, doctors’ visits, symptoms..) as hard to get disability insurance

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@LongCovidSOS @LongCovidKids @longcovidwork @LongCovidCH @LongCOVIDEurope @LongCovidWales @LongCovidScot @globalhlthtwit @chrischirp @dgurdasani1 @danielgoyal @martinmckee @ReicherStephen @HelenRSalisbury @Dr_D_Robertson

Do reinfections harm us more & more?