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Dr Elisa Perego Profile picture
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7 Sep, 44 tweets, 49 min read
Yes. Many are definitely underestimating the dangers of #LongCovid and #LongCovidKids

Patients have been reporting and publishing on the gravity of the condition for over 1 year. Policy makers are still hesitant to fully acknowledge it

Thread and data collection down here 🔽
I add in my own🧵 some scientific papers and other key contributions to knowledge by patient researchers. Not exhaustive!

@fi_lowenstein @itsbodypolitic
and @ahandvanish @patientled in the NYT: the pandemic is a mass disabling event

#LongCovid

nytimes.com/2021/03/17/opi…
Davis et al (2021) characterize #LongCovid in a large cohort of patients at 7 months from symptom onset. Patients come from support groups in many different countries.

@patientled

@EClinicalMed

thelancet.com/journals/eclin…
In this July 2021 paper, N.A. Alwan discusses the road to addressing #LongCovid

@Dr2NisreenAlwan

science.org/doi/full/10.11…
McCorkell et al (2021) discuss the key role of #LongCovid research within the framework of a patient-led collective

@patientled

scholar.google.com/scholar?hl=it&…
In this 2020 paper, N. A. Alwan was already calling for openly addressing and defining what recovery from covid actually is

@TheLancet

We need so much more work on this. Policy makers please take note!

#CountLongCovid

#LongCovid

scholar.google.com/scholar?start=…
N.A. Alwan et al (2020) address the role of medical professionals, who are often patients too, in addressing #LongCovid

@bmj_latest

Many other great advocates and researchers here, such as @ClareRayner6

scholar.google.com/scholar?start=…
A really groundbreaking piece by N.A. Alwan in @nature

Dated to 2020, the article clearly states what seems so obvious now.

A negative covid test doesn't mean recovery.

#LongCovid

scholar.google.com/scholar?start=…
In this article first published in October 2020 @felicitycallard and I detail the rise of #LongCovid in early to mid 2020

How and Why Patients Made Long Covid

I'm proud our article has been among the most read pieces in @socscimed since publication

scholar.google.com/scholar?hl=it&…
A truly groundbreaking contribution from F. Callard (2020) in @somatosphere

@felicitycallard

Published in late spring, this was, I think, the first academic publication in the world to openly challenge the notion of "mild" covid

#LongCovid

scholar.google.com/scholar?hl=it&…
F. Callard (2020) reflects on the role of patient activisms in challenging how Covid was initially understood

Epidemic Time: Thinking from the Sickbed

#LongCovid challenges ideas of "acute" vs "chronic" that are so common in medicine!

@felicitycallard

scholar.google.com/scholar?hl=it&…
Many great advocates and patient researchers in this piece in the @TheLancet

Including @ClareRayner6 @ClaireHastie1 @RobinGorna @Know_HG

@long_covid

Gorna et al (2021) #LongCovid guidelines need to reflect the lived experience

scholar.google.com/scholar?hl=it&…
Norton et al (2021) note that a multifaceted disease like #LongCovid requires a multidisciplinary approach

@TheLancetInfDis including patient advocates and researchers like @ClaireHastie1 @jakesuett @Know_HG

@long_covid

scholar.google.com/scholar?hl=it&…
In this preprint, Michelen et al (2021) detail a living, systematic review to characterize #LongCovid

This is a paper which includes again many patient researchers from @long_covid

scholar.google.com/scholar?hl=it&…
In this open letter from 24 September 2020, my co-authors and I detail what #LongCovid is, where it comes from

It was one of the first papers ever on Long Covid, by an all-patient team

@Dr2NisreenAlwan @LaurieStras @preshitorian @keyeri @felicitycallard

wellcomeopenresearch.org/articles/5-224…
On 1 October 2020 @felicitycallard @Dr2NisreenAlwan @LaurieStras @keyeri @preshitorian and I, discuss why we need to keep using the patient-made term #LongCovid

An opinion piece in @bmj_latest

We are still using it one year later!

blogs.bmj.com/bmj/2020/10/01…
I will continue adding new patient led papers, or papers with a significant patient contribution, in the next few days!

It's so many of them, very pleased of the great contribution patients are giving to our understanding of COVID-19 as well as pandemic policy!

#LongCovid
As early as *April 2020* @ClareRayner6 and @DocAmali wrote a @bmj_latest piece to challenge the somewhat simplistic description of covid found in many outlets

The disease is complex. So many symptoms!

Clinical features of COVID-19

#LongCovid

bmj.com/content/369/bm…
23 June 2020: another @bmj_latest piece by @ClareRayner6 @DocAmali details a prolonged course of covid illness with a relapsing-remitting pattern

Incredible how the relapsing-remitting nature of #LongCovid is still called into question in some quarters!

blogs.bmj.com/bmj/2020/06/23…
10 July 2020: Lokugamage et al calls for patients and carers to be involved in the definition and treatment of #LongCovid

Long Covid activism has called for patient-led research and involvement since the beginning!

@DocAmali @ClareRayner6 @bmj_latest

blogs.bmj.com/bmj/2020/07/10…
Thanks @ClareRayner6 for sharing this!

In July 2020 @Medscape publishes a feature on patient-led advocacy and research by medical professionals with #LongCovid

medscape.com/viewarticle/93…
A truly groundbreaking contribution by @patientled @itsbodypolitic @ahandvanish et al

Originally published on *11 May 2020* this was the first large-scale study in the world to show that recovery from covid wasn't either or short.

#LongCovid

patientresearchcovid19.com/research/repor…
N.A. Alwan (2021) details what the #LongCovid journey can teach to medical professionals in dealing with covid and chronic conditions more in general

@Dr2NisreenAlwan @NatureComms

nature.com/articles/s4385…
@DocAmali @FrancesorFran et al (2021) in the @bmj_latest

Patient-led research and advocacy is questioning long-held, potentially harmful assumptions in medicine.

With #LongCovid and beyond, we call to innovate the discipline through patient involvement!

bmj.com/content/373/bm…
Another groundbreaking, patient-led contribution from the early pandemic days

Published on *13 April 2020* this award-winning piece by @fi_lowenstein @itsbodypolitic in @nytimes openly challenged the myth of a "short" covid recovery

#LongCovid

nytimes.com/2020/04/13/opi…
Advocacy in Finland reports on #LongCovid on the website curated by @apuakoronaan

#koronaoire #koronafi

@Savolainen_J

apuakoronaan.fi/koronaviruksen…
A path-breaking piece on #LongCovidKids

Simpson and Lokugamage (2020) ask to count #LongCovid in children

Published on *16 October 2020*

Are we still questioning the dangers of covid in kids?

@LongCovidKids @FrancesorFran
@DocAmali @LongCovidSOS

blogs.bmj.com/bmj/2020/10/16…
@LongCovidKids advocates like @FrancesorFran contribute to this important paper on #LongCovid in children

Buonsenso et al (2021) analyses #LongCovidKids in a sample of 510 children

@surf4children

scholar.google.com/scholar?hl=it&…
Simpson and Lokugamage (2021) strongly advocate to address the long-term health effects of SARS-CoV-2 infection in children

Another important piece in @bmj_latest on #LongCovidKids!

@DocAmali @FrancesorFran @LongCovidKids

#LongCovid

scholar.google.com/scholar?hl=it&…
Simpson et al (2021) call again to address the plight of children suffering from #LongCovid

The worrisome reports from both parents and research are still not properly addressed in policy making!

@FrancesorFran @DocAmali
@LongCovidKids #LongCovidKids

bjgp.org/content/71/706…
Munblit et al (2021) note that SARS-CoV-2 infection in children risk to have a long-last/ life-long legacy

This call for action on #LongCovidKids features again #LongCovid advocate and researcher @FrancesorFran @LongCovidKids

adc.bmj.com/content/early/…
@Dr2NisreenAlwan leads a top contribution in @TheLancet

The scientific consensus on COVID-19 is out: we need to act now to control the pandemic!

This includes addressing the risks of #LongCovid

It was 31 October 2020

thelancet.com/journals/lance…
Out on 20 April 2020 in @TheLancet

@Dr2NisreenAlwan is second author

A team of public health experts ask for strengthening the UK covid testing capacity

Feel like ages ago. We still need a strong testing strategy in many countries across the globe!

thelancet.com/journals/lance…
A key topic is whether vaccination has a positive or negative effect on #LongCovid

Many advocates in this preprint on methods and research to come! like @ahandvanish @AthenaAkrami @GinaAssaf @LisaAMcCorkell @patientled @dianaberrent

@VirusesImmunity

medrxiv.org/content/10.110…
Again on #LongCovid and vaccination

I talked to @medpagetoday in March 2021 to ask for better data collection ---and if long covid patients should be among propriety or "at risk" groups

Other patient researchers like @ahandvanish @gezmedinger here!

medpagetoday.com/special-report…
The impact of the covid vaccine on (post) viral conditions like #LongCovid and #MEcfs is discussed in this preprint from June 2021

Features contribution by patient researchers like @selkieO
@LongCovidSOS @Vickyvdtogt

Many individual reactions noted

papers.ssrn.com/sol3/papers.cf…
Another key topic 🔥 Can you develop #LongCovid after being vaccinated?

As usual, patient researchers are leading the way!

@ahandvanish @patientled asks for appropriate data collection in this important @guardian piece from 12 August 2021

theguardian.com/commentisfree/…
Cosimo Fusco co-author a scientific publication on #LongCovidKids out 1 June 2021

Fusco is the father of a child with #LongCovid in Italy

Partnerships between medical professionals and carers are fundamental to optimal treatment

@surf4children et al

europepmc.org/article/pmc/pm…
Nurek et al (2021) offer a rapid, expert guide for dealing with #LongCovid in absence of optimal, established guidelines for a new, emerging condition

A Dephi study

Many great advocates here like @LinnJarte @bcdelaney1 @ClareRayner6

bjgp.org/content/early/…
@Doctor_IMF scientist and patient writes about his first weeks, and then months, into #LongCovid

He also talks about campaigning for care and recognition 🔥

@LongCovidWales

COVID-19: a first hand account

I. Frayling (2020)

rcpath.org/profession/pub…
On *13 May 2020* Pauline Oustric @Food_reward shares via Twitter and as @LinkedIn blog her story of prolonged covid illness

A devastating disease

Dr Oustric, PhD, was to become a world leading #LongCovid advocate and president of @apresj20

#apresJ20

1 July 2021

Dr Pauline Oustric @Food_reward
president of @apresj20 is co-author of this publication on the role of patient expertise and epistemic authority in #LongCovid and beyond

Tourette-Turgis et al (2021)

#apresJ20

europepmc.org/article/med/34…
Rehabilitation, pacing, and the correct approach to exercise are key topics in #LongCovid

@LongCOVIDPhysio is leading the way, for example with this briefing paper, co-authored by @darrenabrown among others

longcovid.physio/our-work/world…
Early February 2021

@felicitycallard and I publish this preprint on the continuous contribution of patients to #LongCovid research

And the risks ahead, like exploitation and gatekeeping in medicine

A few of these risks have proven true since then!

osf.io/preprints/soca…

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More from @elisaperego78

Dr Elisa Perego Profile picture
5 Sep
Long-term damage to the kidney is a severe effect of SARS-CoV-2 infection. It's not that rare

It often starts with little symptoms or no symptoms at all. You can end up with permanent issues

A new study is out. But kidney injury in acute and #LongCovid has been known for long
John Hopkins Medicine, for example, was discussing acute and long-lasting kidney injury after SARS-CoV-2 infection in a featured article from May 2020

#LongCovid

hopkinsmedicine.org/health/conditi…
In an article from April 2021, Zhang et al follow the recovery trajectory of 143 hospitalized covid patients with new-onset kidney disease

9% still had kidney injury four months after hospital discharge (mostly elderly category)

#LongCovid

bmcinfectdis.biomedcentral.com/articles/10.11…
Read 11 tweets
Dr Elisa Perego Profile picture
5 Sep
I disagree. It wasn't clear at all since "the beginning" that SARS-CoV-2 would have to become endemic

Making a virus as dangerous as SARS-CoV-2 "endemic" is a failure. Very poor policy making.

The countries that went for elimination, achieved elimination.

#LongCovid
Countries that managed to eliminate or strictly contain SARS-CoV-2, like New Zealand, have been put at continuous risk by poor policy making from the rest of the world.

This includes poor political and public health choices in the EU, the UK and the US.

#LongCovid
Quite a few other countries, like Italy in the first wave, came close to elimination, too

Lombardy, one of the worst hit areas in the world in 2020, managed to crush the curve despite many mistakes in active pandemic management. Yes, I was there. I speak of reality, not models
Read 4 tweets
Dr Elisa Perego Profile picture
4 Sep
I agree 100% with @emilyesfraser. Minimizing #LongCovid is a huge failure in public health. One of the biggest in the pandemic.
People have been misled since the beginning about the gravity of covid. The long-term effects are often devastating, even, potentially, in children
The gravity and pandemic potential of SARS-CoV-2 infection were already evident since the first reports from Wuhan

@TheLancet 24 January 2020

#LongCovid

thelancet.com/journals/lance…
The earliest, severe patients treated and hospitalized in China were often *not* old

The median age in this early 2020 sample was 49 years

@TheLancet

#LongCovid

thelancet.com/journals/lance…
Read 8 tweets
Dr Elisa Perego Profile picture
27 Aug
#LongCovid in China 🇨🇳 🧵

👉 49% sampled patients remained symptomatic after 1 year
👉 1276 survivors from Wuhan hospital
👉 one of the longest follow up in the world, with data at 12 month and comparison with data at 6 month from the same cohort

thelancet.com/journals/lance…
Key data points and take aways
👉 30% with dyspnea at 12 month, up from 26% at 6 month
👉 26% with symptoms described as "anxiety" or "depression" at 12 month, up from 23% at 6 month
👉 12% of patients who were employed before covid couldn't go back to work

#LongCovid
👉 12% had abnormal results at six minute walking distance test, down from 14% at 6 month
👉 3 patients diagnosed with ischemic stroke, 1 stable angina
👉 Lung diffusion impairment found in 23--54% patients at 12 month (three groups of severity). No improvement from 6 month mark
Read 11 tweets
Dr Elisa Perego Profile picture
25 Aug
#LongCovidKids in France 🇫🇷

PET scans reveal neurological damage in a sample of children following SARS-CoV-2 infection. Comparable issues were previously found by the same research group in #LongCovid adults.

Thanks to our friends of @apresj20 for sharing this important news.
Evidence for neurological impairment including from brain damage in #LongCovid is sadly growing

See for example another study here from the US

These are studies with some limitations like sample size. But match well the symptoms millions are reporting

news.harvard.edu/gazette/story/…
A severe burden of neurological long term effects from SARS-CoV-2 infection has already been reported in a vast sample published in a @TheLancet venue.

Data at 6 months after onset in thousands of patients.

thelancet.com/journals/lanps…
Read 5 tweets
Dr Elisa Perego Profile picture
19 Aug
New on #LongCovidKids 🧵🔥

👉 121 children aged 0--18 years
👉 37.2% had symptoms for at least 1 month
👉 symptoms included coughing, fatigue, SOB, chest and back pain, dizziness, headache, palpitations
👉 clear evidence of cardiovascular involvement

pubmed.ncbi.nlm.nih.gov/34407902/
👉 clinical signs on cardiovascular evaluation included changes and abnormalities in systolic blood pressure, left ventricular ejection fraction, relative wall thickness, and tricuspid annular plane systolic excursion
👉 evaluation included echocardiogram

#LongCovid
👉 a control group of 95 healthy children included
👉 the covid plus and control groups were comparable in age, weight, body mass index
👉 yet, statistically significant cardiovascular involvement was in the covid group 🔥
👉 #LongCovidKids is real, with clinical signs 🔥
Read 4 tweets

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