Discover and read the best of Twitter Threads about #CountLongCovid

Most recents (24)

1. In this piece @CommsMedicine I draw on my lived experience, research, and advocacy work with #LongCovid and reflect on some of the lessons learnt.
nature.com/articles/s4385…
2. "The first lesson was how much our understanding, as scientists or physicians, can be enriched by patient experience. This includes genuine patient involvement in all stages of science and healthcare design, but may also include us wearing the two hats of patient and expert."
3. "... we need systems in place that measure morbidity in addition to mortality. We have always been better at measuring the acute over the chronic, but it is the latter that has the most long-lasting impact on societies."
#CountLongCovid
Read 13 tweets
Listen to @HarryBoby4 talking about his experience with #LongCovid. LC can affect young super-fit people. 30% of 18-34 year olds who reported having #COVID19 in the REACT-2 study said they were still symptomatic 12 weeks on.
imperial.ac.uk/news/224853/ov…
#CountLongCovid @allthecitizens
Here he tells me about the relapsing nature of the illness.
Here he describes more what it feels to have 'fatigue'. It's not just feeling tired. "I am not a lazy individual. I am not someone who likes to be inside. I am someone who pushes through in training...".
Read 4 tweets
New @ONS prevalence estimates: kids & young people living with #LongCovid in UK
(for methods & full tables see links below)
2-11y: 11,000 (95% CI 7,000-16,000)
12-16y: 19,000 (95% CI 15,000-24,000)
17-24y: 89,000 (95% CI 77,000-101,000)
#CountLongCovid
ons.gov.uk/peoplepopulati…
To put those numbers into context:
As % of the UK population living in private households in that age group (not only of those infected) that is:
1 in 1000 for 2-11 year olds
5 in 1000 for 12-16 year olds
15 in 1000 for 17-24 year olds
#LongCovidKids
ons.gov.uk/peoplepopulati…
Estimates on impact on daily life:
#LongCovid causing "activity limited a lot":
2-11y: 2,000
12-16y: 1,000
17- 24y: 8,000
#LongCovid causing "activity limited a little":
2-11y: 4,000
12-16y: 9,000
17- 24y: 34,000
Read 4 tweets
See below for a recent testimonial from one of our Admin team who was admitted into a Vancouver Post-Covid Clinic this morning.

This is a must-read about how these clinics truly operate within the context of #LongCovid

#cdnpoli #cdnmedia #CountLongCovid

👇
1) “So I had my initial appointment at the long Covid clinic at Jimmy Pattison this morning. I am 16 months into this ordeal, originally ill in February 2020. Obviously I had high hopes. but overall the experience was highly anti-climactic.”
2) “For starters they didn’t bring me in till nearly an hour after my appointment time. I think they just forgot about me or the receptionist failed to tell the doctor I was there. At the 45 minute mark I went up and asked what the problem was.”
Read 15 tweets
1/ New #LongCovid figures released by @ONS. Lots of rich information to go through. Prevalence of experiencing at least one of 12 symptoms among those with lab-confirmed infection at 12 weeks is 13.7%, compared to 1.7% in a control group with no covid.
#CountLongCovid Image
2/At 5 weeks with 95% confidence intervals (any symptom):
23% (18.9, 27.9) female
18.7% (15.5, 22.7) male
25.6% (20.9, 31.4) 35-49y
25.1% (21, 30.1) 50-69y
22.6% (18.1, 28.2) 25-34y
16.9% (12.8, 22.3) 17-24y
15.9% (12.3, 20.5) >=70y
13% (10.3, 16.6) 12-16y
9.8% (7.3, 13.1) 2-11y Image
3/ At 12 weeks, age & sex breakdown below. Pay attention to this:
7.4% of those aged 2-11 years
8.2% of those aged 12-16 years
@LongCovidKids Image
Read 4 tweets
What does #CountLongCovid really mean?
THREAD
1/ I started calling for illness following #COVID19 to be counted in July 2020. It's still not being counted. We have estimates from research & small(ish) studies of the prevalence of #LongCovid but that's not counting. I'll explain..
2/ First let's distinguish between research & surveillance in counting. You can have a study with a sample of covid patients and follow them up to ask if they have LC. The proportion (i.e. prevalence estimate) you get is dependent on the quality & degree of bias of the study.
3/ These will vary in the way they assess and define LC, the type of patients they start with, how did they select them, from where & who agreed to be followed up etc. This is why we get different estimates. They are very useful, because the more studies the better idea we have.
Read 11 tweets
1 year ago I got infected w/ #SARSCoV2. I still haven't recovered. I'm not the same person. #LongCovid has fundamentally changed my view on other chronic diseases. I'm a @LongCovidCH advocate fighting for recognition, guidelines for diagnosis & management, & more research. 1/8
I believe most infections happen via #aerosols indoors. #SARSCoV2 is airborne. Measures like 1.5m distance, disinfection of surfaces, plexiglass separation are pathetic & give false security. Wearing the wrong masks or wearing them wrong or not at all is ignorant. #WearAMask 2/8
Children, adolescents & adults can get infected & transmit #SARSCoV2. About 10% of them will suffer from #LongCovid. Irrespective of age, gender, fitness level, health, comorbidities. Risk factors: being female, immunological sensitivity, higher BMI (apparently, not sure) 3/8
Read 8 tweets
Last week we had the first meeting on #LongCovid in Italy.

We were pleased to receive full support from Italy's Ministry of Health @MinisteroSalute, with a formal letter that used the patient-made term Long Covid.

@LongCovidItalia #LongCovidItalia @MartaEsperti ImageImage
We want to thanks the international #LongCovid community and all the allies (clinicians, researchers etc.) who helped us to reach this milestone @LongCovidSOS
@long_covid @apresj20 @apuakoronaan @LongCovidKids @LongNetherlands @LongCovidWales

#LongCovid #NothingAboutUsWithoutUs
Read 6 tweets
1/ New #LongCovid prevalence figures by age and sex out by @ONS today. Prevalence of any symptom at 5 wks after positive test:
27% at age 35-49
26% at age 50-69
25% at age 25-34
18% at >=70
17% at age 17-24
15% at age 12-16
13% at age 2-10
21% males
24% females
#CountLongCovid
2/ Estimated number of people with symptoms lasting 5-12 weeks in England in week commencing 27 Dec 2020 is 301,000.
ons.gov.uk/peoplepopulati…
3/ How is this not making headlines? If you get covid then you have one in four chance of continued symptoms after 5 weeks. If you are aged 17-24 it is one in six, if you are aged 12-16 it is one in seven, and if you are a child under 12 it is one in eight.
Read 6 tweets
Commons debate on #LongCovid starts with @LaylaMoran giving an introduction.

"An estimated 300k have experienced #LongCovid in the UK. There are over 4000 more Long Covid cases added everyday"

#LongCovidCommonsDebate @AppgCoronavirus @march_change
"There is nothing mild about Long Covid." @LaylaMoran continues.

"The all-party group are asking for three things:
Better reporting, urgent money for research and recognition by employers and the welfare system"

#LongCovidCommonsDebate @AppgCoronavirus @march_change
Read 28 tweets
The @UKParliament debate on #LongCovid is about to start. You can view it live here parliamentlive.tv/Event/Index/80…

We'll be live tweeting for those unable to listen in

@LaylaMoran @AppgCoronavirus @march_change @GwynneMP
Public awareness of #LongCovid is poor. There are potentially 4000 new cases of #LongCovid every day this year @LaylaMoran
#LongCovid affects children
Read 42 tweets
„Wir erfahren, dass neben der Lunge viele Organe von #COVID19 betroffen sind und dass die Infektion auf vielfältige Weise die Gesundheit eines Menschen beeinträchtigen kann.“ /CDC
#GenesenIstNichtGesund
#LongCovid #Longhaulers #CountLongCovid #coronavirus
delawarestatenews.net/coronavirus/co…
„Wir kennen die langfristigen Konsequenzen nicht und es ist wirklich besorgniserregend, dass es langfristige Auswirkungen auf den Einzelnen geben könnte. Das ist ein weiterer wirklich wichtiger Grund, warum wir alle alles tun müssen, um nicht krank zu werden.“
Die häufigsten Symptome, berichtet Dr. Chasanov, sind Müdigkeit, Atemnot, verminderte Fähigkeit, d. gleiche Aktivität wie vor der Infektion auszuführen, Gedächtnisprobleme wie Vergesslichkeit, Kopfschmerzen, Geruchs- und Geschmacksverlust. Manchmal auch eine schnelle Herzfrequenz
Read 6 tweets
When asked to add to this piece in ⁦@guardian⁩ Observer, I thought it would be a great opportunity to spread awareness of #LongCovid. Instead it’s pushing outdated views on #MECFS and mental illness. I am furious and will be writing to complain theguardian.com/world/2020/nov…
Instead of highlighting how hard we have to fight to get heard by doctors, and the long struggle for us to get investigated, Eleanor suggests we are pushing for ‘superfluous testing’
Instead of showcasing the lifeline that support platforms like @long_covid and @LongCovidSOS have been for people isolated with this illness, she suggests these groups promote dangerous thinking
Read 6 tweets
9% des patients hospitalisés pour la covid ont besoin d'une réadmission à l'hôpital dans les 2 mois, et 1,6% nécessitent des réadmissions multiples, selon une étude américaine réalisée entre les mois de mars et d'août 2020.
cdc.gov/mmwr/volumes/6…
Une large étude du Lancet note qu'un malade de la covid sur 5 souffre d'anxiété, dépression ou insomnie sur les 3 mois a minima qui suivent sa contamination. La préexistence de troubles psychiatriques est aussi corrélée avec le risque d'être contaminé.
1/2
thelancet.com/journals/lanps…
L'étude remarque également que la covid majore le risque d'un ensemble de troubles psychiatriques, dont la démence, y compris chez les patients pour qui ces troubles n'étaient pas préexistants.
2/2
#LongCovid #ApresJ20 #covidlong Image
Read 226 tweets
#CountlongCovid 10%? 20%? 30%? [THREAD]
🔎To better understand #LongCovid prevalence, I made a figure based on 27 articles with 9 preprints (thanks @ahandvanish)
% are not comparable as
- population differ (%hospitalized)
- symptoms measured at different time
- Biais & sample Long Covid % are not comparable between studies
2 - If we look at mostly non hospitalized patients with PCR+:

#LongCovid prevalence vary btw 35 - 44% after 1 month and 24% after 3 months

medrxiv.org/content/10.110…
medrxiv.org/content/10.110…
3 - We need standardized study in the general population to efficiently measure #LongCovid in both patients with PCR+ and -, variety of symptoms, non hospitalized, AND with a follow-up.
poke @Dr2NisreenAlwan
🔽look at this thread for links to the studies
Read 5 tweets
I’m concerned about the growing tendency in some circles to equate #LongCovid with #MEcfs. I think this is bad for both #Longhaulers and ppl living with ME/CFS. A thread. 👇
2. Before I start, let me be clear this is not a swipe at the #MEcfs community which has been hugely supportive of #Longhaulers, sharing tips & resources & lots of moral support. I am very grateful for that support.
3. Nor is this to deny the reality that some #Longhaulers have developed or are on track to develop #MEcfs. We know from the first SARS that this could end up being a significant number of #COVID patients.
Read 26 tweets
Here comes my #longcovid journey. Going back home from cabin holiday March 20th, my sister was driving and started complaining weird pain behind her eyes. She also sneezed slightly. We assumed that it was just due to car air conditioning and her allergies. 1/
Sunday 22nd eating breakfast I suddenly got so tired that I had to go back to sleep. This is when I knew something was seriously wrong. I slept almost the whole day. My sister called me the next day and was feeling unwell. I wasn’t well either. 2/
I had muscle pains, headache and loss of appetite. It didn’t feel like normal flu or a cold. It just felt odd. I called 116 117 and tried to get COVID-19 test but was denied because didn’t have “the usual symptoms”. By this time I was 100 percent certain I had it. 3/
Read 15 tweets
Very informative @jimalkhalili #TheLifeScientific with @neil_ferguson. A thread disputing his conclusion that we face "a trade off between saving lives and saving the economy and jobs". It is so much broader than that .. bbc.co.uk/sounds/play/m0…
1/n “lives vs economy” is unhelpful, it is not primarily the economy and jobs that are diminished by full or partial lockdowns, rather the almost unimaginable richness of life in all its domains suffers. We are social beings, and a major part of that sociality is stripped from us
2/n Thus we must not think of lives vs the economy, we should frame this as lives vs lives, as Ramesh Thakur wrote with respect to covid in India in April johnmenadue.com/ramesh-thakur-…
Read 18 tweets
The President wants to decrease testing to make it appear that he is slowing the spread of COVID-19 for purposes of getting re-elected.
The truth is we need frequent rapid testing @michaelmina_lab for determining who is infectious, so we can quickly contact trace and impose mandatory quarantine in gov’t provided housing @bencowling88. (1/2)
And such housing needs to be staffed by RN’s wearing adequate PPE (at least a N95) to provide early treatment to stop long covid and prevent cases from deteriorating to where supplemental O2 and steroids like dexamethasone are needed. (2/2) @Dr2NisreenAlwan #countlongcovid
Read 5 tweets
@busycactus @YouAreLobbyLud @nick_coatsworth @drajm @WHO @Dr2NisreenAlwan @DrKatrin_Rabiei @itosettiMD_MBA @apoorva_nyc @danaparish @Cleavon_MD @mvankerkhove @jessieabbate @meganranney @CarlosdelRio7 Thread. I think the WHO would be wise to look at this article from Paul Mayo, MD Academic Director of Critical Care at the flagship hospital for the largest health system in NYS @ZuckerSoM @NorthwellHealth northwell.edu/coronavirus-co… (1/
@busycactus @YouAreLobbyLud @nick_coatsworth @drajm @WHO @Dr2NisreenAlwan @DrKatrin_Rabiei @itosettiMD_MBA @apoorva_nyc @danaparish @Cleavon_MD @mvankerkhove @jessieabbate @meganranney @CarlosdelRio7 @ZuckerSoM @NorthwellHealth “The severity, morbidity and mortality of COVID-19 must be re-emphasized to all, both young and old, as it spares neither.” @SusanSchutte2 has many examples of young people who get seriously affected by this virus. #CountLongCovid (2/
@busycactus @YouAreLobbyLud @nick_coatsworth @drajm @WHO @Dr2NisreenAlwan @DrKatrin_Rabiei @itosettiMD_MBA @apoorva_nyc @danaparish @Cleavon_MD @mvankerkhove @jessieabbate @meganranney @CarlosdelRio7 @ZuckerSoM @NorthwellHealth @SusanSchutte2 “SARS-CoV-2 was thought to be primarily transmissible via … droplets …. Those droplets usually travel short distances before falling and will not reach another person practicing social distancing nor penetrate standard (cloth or surgical) masks.” (3/ @jljcolorado
Read 18 tweets
De lange termijn gezondheidsschade na covid19 wordt al maanden niet erkend door het @rivm.

@Vickyvdtogt is een van de >14.500 coronapatiënten met langdurige klachten in NL.

Luister hier naar haar ervaring met covid en uitleg over wat #LongCovid is:

Zij roept de @Rijksoverheid op om 1,5 miljoen vrij te maken voor het onderzoek naar #LongCovid van de @Hartstichting, zodat patiënten eindelijk meer duidelijkheid krijgen over hun klachten en er een goed behandeltraject opgesteld kan worden.

Het is nodig.

#CountLongCovid
Read 4 tweets
#LongCovid community. Where am I going wrong? I’m off work (other than doing a small amount of “essential” and thought I was pacing but now having another relapse. This is my diary

Monday
No work
Pilates 1 hour
2,964 steps
Slept 3 hours in the afternoon
9 hours sleep
Tuesday
1.5 hours of work
Swimming 30 minutes
4,088 steps
Slept 1.5 hours
Rested on bed for further 2 hours
Muscle aches, chest pain and heart palpitations
9 hours sleep

Wednesday
1 hour of work
Felt OK
Went for a walk 10,602 steps
Swimming 12 minutes
Went to bed for 10 hours
Thursday
2 hours of work
Exhausted, headache and muscle aches
Bed all afternoon
997 steps
Read 4 tweets
If I die today of #LongCovid related condition,death won’t be counted anywhere as #COVID19 despite previously being fit & healthy mid-40s female Not only are @DHSCgovuk not counting Longcovid they aren’t counting Longcovid deaths @PaulGarnerWoof @Dr2NisreenAlwan @trishgreenhalgh
Obviously not planning on dying however thought just occurred to me. Or am I wrong?
Read 3 tweets

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