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Dr Elisa Perego Profile picture
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Sep 13 • 17 tweets • 9 min read
It was known SARS was leading to chronic disease before this pandemic started. Yet, COVID, from a not dissimilar virus, SARS-CoV-2, has been presented across the pandemic as "just a bad flu" or a "cold"
We need accountability
#LongCovid #longSARS
Obviously, we also knew other viruses were leading to long-term sequelae. This is the case of influenza, too, in some cases. But SARS-CoV-2 as a pathogen was quite similar to SARS CoV. It's called SARS-CoV-2 for a reason. Yet, SARS morbidity was not addressed in policymaking
The first news out of China were speaking of a "potential SARS outbreak". Already on 31 December 2019. Not a "cold outbreak"

crisis24.garda.com/alerts/2019/12…
In early January the Guardian was reporting "experts being concerned about the potential SARS outbreak in China". Not the "cold outbreak"

theguardian.com/world/2020/jan…
In early January 2020, again in the Guardian, it was reported that "China pneumonia outbreak may be caused by Sars-type virus".

This was, apparently, from the WHO itself!

Not the "common cold"

theguardian.com/science/2020/j…
By 24 January 2020, the data on the Wuhan outbreak were so consolidated they were being published in the top scientific journal @TheLancet. It was clear we were facing a potential pandemic driven by a SARS-like virus. The 1918 pandemic was mentioned

thelancet.com/journals/lance…
On 24 January 2020, the top @TheLancet also published the clinical data of 41 patients infected with the novel coronavirus and hospitalized in Wuhan.

This was a severe disease. Not a "cold".

Median age was 49 years.

Six patients had died by then.

thelancet.com/article/S0140-…
"I couldn't get out of bed, I couldn't lift my head. I couldn't go to the washroom." 

On 28 January 2020, SARS survivor and retired paramedic, Bruce England, bravely spoke up about the risks of the novel coronavirus, and his SARS experience

cbc.ca/news/canada/to…
SARS survivor Bruce England spoke up again on television on 29 January 2020

"Please protect the frontline workers"

You also can hear about his experience with SARS. This was a *prolonged* severe disease with sequelae. Not a "short, mild illness"

In late winter~early spring 2020, covid survivors from early hotspots and the disability community, with particular regard to ME~post viral patients, were raising the alarm on prolonged covid symptoms and potential sequelae

Myself and @felicitycallard

sciencedirect.com/science/articl…
By May 2020, #LongCovid was an established phenomenon.
The first patient-led research and reports had now been emerging, powerfully, in the form of surveys, blogs, exchanges on social media, tweets, Twitter threads, data shared in private chats, and in the press.
Data shared by patients in #LongCovid were depicting a prolonged, severe, multi-system disease, including in the "young and healthy". This Covid wasn't a mild respiratory illness, short and inconsequential in most. Cardiovascular disease was key.

wellcomeopenresearch.org/articles/5-224
Interestingly, SARS itself was a prolonged disease. Many were ill for years or never recovered as @laurieallee thread will also show.
This is an early thread of mine, which also follows a bit the story of SARS survivor Bruce England

#longSARS

In August 2020, the @WHO openly recognized the long-term health effects of SARS-CoV-2 infection. This was following intense patient-led advocacy. @MartaEsperti and I represented Italy at the meeting.

#LongCovid

At the WHO meeting, the other patient-made term, Long Haul Covid from @Amy_Ant was also used in public communications and in the media. Other early influential patient-made term to indicate prolonged covid symptoms include #apresJ20 #covidpersistente #longhaulers etc.
On 7 October 2020, the top science journal @Nature wrote a landmark editorial

"Long COVID: let patients help define long-lasting COVID symptoms"

Patient-led expertise is to be centred in medicine. #LongCovid was indeed identified and named by patients

nature.com/articles/d4158…
All in all, the early story of #LongCovid, the long-lasting legacy of SARS, as well as sequelae from other infections, caution us against minimizing SARS-CoV-2. The scientific evidence about Long Covid is now overwhelming. Yet, we're still letting SARS-CoV-2 rip

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More from @elisaperego78

Dr Elisa Perego Profile picture
Sep 14
Must be said #LongCovid is not a neurological disease only, although neurological impairment is well attested
It often presents as a multi-system disease
Cardiovascular, cardiopulmonary, metabolic, renal and other multi-organ manifestations are common
They can be life-threatening
A full appreciation of cardiovascular and haematological (e.g. blood clotting) manifestations in #LongCovid is fundamental as these conditions can kill.
Other facets of Long Covid like diabetes or kidney disease are also of concern, as these can be life-threatening if untreated
On cardiovascular sequelae in #LongCovid for example @NatureMedicine VA sample

nature.com/articles/s4159…
Read 7 tweets
Dr Elisa Perego Profile picture
Sep 13
"At least 17 million people in the WHO European Region experienced #LongCovid in the first two years of the pandemic; millions may have to live with it for years to come"

@WHO_Europe

I'd remove "may have to"

We know this will happen.
who.int/europe/news/it…
Delayed care, delayed recognition, and ongoing spread of SARS-CoV-2, with reinfections, will contribute to ongoing damage and even death in #LongCovid

@WHO recognized Long Covid in August 2020

Long Covid was already widely reported in spring 2020

We knew about SARS already
The cardiovascular, multi-system and thrombotic nature of covid was already established in early to mid 2020. The same for #LongCovid as reported by patient-researchers and advocates already in the year 2020. People have been left with no care even for manageable conditions
Read 6 tweets
Dr Elisa Perego Profile picture
Sep 13
Spanish football coach Francisco Garcia died from covid in March 2020. At 21, Garcia was, back then, one of the youngest people to have died from the disease. After being rushed to the hospital with severe symptoms, he was also found to have leukaemia.

goal.com/en/news/spanis…
Garcia, reportedly, didn't know to have leukaemia. Leukaemia might have contributed to the severity of Francisco's covid presentation. Garcia was hospitalized and died around a week after testing positive for SARS-CoV-2.
Once again, young people were already dying from acute and prolonged covid complications early in the pandemic. Covid was never a disease of the elderly. Some young people dying from covid might have suffered from other diseases. This doesn't diminish needless death from covid
Read 5 tweets
Dr Elisa Perego Profile picture
Sep 12
Professional sumo wrestler Shobushi died in May 2020 from covid-related multi-organ failure. At 28, he was one of the youngest persons to have died from covid in Japan at the time.
Covid has never been a disease of the "elderly" only.

theguardian.com/sport/2020/may…
Sumo wrestler Shobushi developed a fever around or on 4 April 2020. He was unable to get a covid test at the time. As not unusual with covid, his health deteriorated with time. He was hospitalized and then treated in ICU for three weeks. He died in mid-May 2020.
In early 2020 we didn't have the vaccine. Yet, SARS-CoV-2 is still evolving fast, maiming, and killing. The pandemic isn't over. Early knowledge from 2020 sheds light on the efforts, which have been put by many sources into minimizing covid. Covid has never been a "cold".
Read 4 tweets
Dr Elisa Perego Profile picture
Sep 12
Italy's schools are starting in the so-called "post-covid" era (!). No masks and, often, no other safety measures. Very worried, concerned. New variants are emerging. News from other countries already shows infections are coming from unsafe environments

corriere.it/scuola/rientro…
I retweeted a few tweets from people sharing, internationally, their negative experiences and concerns. There are many accounts by experts on this platform with data about BA.5 + and BA.2.75 + (BA. 5 and B.2.75 subvariants) and others.
SARS-CoV-2 keeps mutating at a fast pace
Many people remain un-boosted, or, in some cases, aren't vaccinated at all. We don't how the new bivalent vaccines (against the original strain and "omicron") will hold against new, emerging variants. Not everyone is eligible for bivalent vaccines anyway.
Read 4 tweets
Dr Elisa Perego Profile picture
Sep 12
#LongCovid is an expensive disease to investigate and treat, as we have been pointing out since 2020. Healthcare-led studies are now finding out, obviously, the same.
If you get a multi-system, prolonged disease like covid — well, that's expensive
Covid and #LongCovid can hit basically all organs and systems in the body. They can cause a vast array of symptoms, which obviously may require a lot of investigations to address and parse. Many complications, like pulmonary and cardiovascular disease, can require expensive tests
#LongCovid can come with a relapsing-remitting pattern, or delayed life threatening events. This means you may need to see and test a patient multiple times at the emergency or in other healthcare settings. Not rarely, the wrong tests are administered!
Read 11 tweets

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