I stand again with @apresj20 and the other patient-led advocacy groups against poor research on #LongCovid, which has been, sadly, published even in a reputable medical journal like @JAMAInternalMed
We need only the top biomedical and patient-researchers to work on Long Covid
Unfortunately, we have seen a few very poor studies, such as the one recently published in @JAMAInternalMed, make it into medical journals with a good standing in the discipline. Such studies are led by psychiatrics or psychologists with no specific expertise on #LongCovid
#LongCovid, the funding made available to study it, and the paradigm shifts this pandemic is bringing about in medicine, are a once-in-a-generation opportunity to transform how we approach the spread of pathogens, post viral diseases, concepts of disability etc.
I hope medical professionals, health bodies, policy makers and other stakeholders will not squander this transformative opportunity to change medicine, and how we approach disease on a societal level
Old-fashioned approaches to complex, viral onset diseases are now out of place

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More from @elisaperego78

5 Jan
I recommend reading this great thread about the long-lasting effects of SARS-CoV-2 infection
Again, this isn't news. We patient-researchers in the first wave had correctly, scientifically, defined covid as a multi-system and prolonged disease ---> #LongCovid

🧵
The narrative that covid was a respiratory disease, mild and short in the young, was wrong. It was blown away by patients in the early 2020, including in academic peer-reviewed pieces

The rise of #LongCovid is narrated in my paper with @felicitycallard

sciencedirect.com/science/articl…
I also suggest to read this great piece by physician-researcher @zalaly in the @guardian on the critical impact of #LongCovid patient-led advocacy and research in medicine

amp.theguardian.com/commentisfree/…
Read 6 tweets
5 Jan
Former football star Antonio Cassano has been hospitalized with covid. His conditions deteriorated days after a positive SARS-CoV-2 test

He is reported to be double vaccinated, now in "good conditions" and with a 95% oxygen saturation on hospitalization

fanpage.it/sport/calcio/c…
This is just news. Thus, not to be taken as a medical record. Notable if #Omicron | partial immune escape even in the vaccinated: two doses only, here, apparently | the possibility of relatively severe disease | presence of at least mild hypoxemia | deterioration days from onset
Overall, and in view of the caveats above = using informal and not official clinical records: #Omicron | covid are not a "cold" or a "little flu" even in those who are vaccinated. Please let's keep vigilant and use all the safety measures at our disposal like airborne prevention
Read 4 tweets
4 Jan
The US is on a monstrous, largely unleashed SARS-CoV-2 spread.
Almost 2000 new deaths. Over 104.000 people in hospital. Almost 20.000 people in ICU. One million new official cases.
This is horrible and not "mild"
We know, scientifically many wil develop #LongCovid

#Omicron
Even if most of the new cases are indeed "mild" and not leading to prolonged disease in view of vaccination, some, at least, will. Maybe many. This is out of 1 million people
We know scientifically that most of those hospitalized or in ICU will develop long-term health issues
We could be facing a monstrous reality where at least 100.000 people --- just to provide a very crude estimate --- could be becoming chronically sick, ill with a prolonged disease, or permanently disabled *only today*. In a single country. From a single disease.

#LongCovid
Read 4 tweets
4 Jan
A note on scientific peer-review as regards the controversial @JAMAInternalMed study on #LongCovid
I submitted a rapid response, which JAMA declined to publish
In so doing, I stumbled upon a couple of key issues about how the review of papers published there works

🧵
These issues can help explain how the very controversial paper in question might have been published in a medical journal of good standing despite its obvious shortcomings and scientific inconsistencies

Long 🧵 with some technical comments about academic peer review
You, basically, submit your paper via an online platform. One key point is that you can list, in the system, a good number of reviewers of your choice by name. Reviewers are experts who will read your manuscript, and suggest the journal whether to publish it or not.
Read 12 tweets
3 Jan
This is a key point about coagulopathy in #LongCovid and (I'd think maybe) a subset of acute covid too 💉
Many have normal ddmer levels because the ddmer is the degraded remnant of clots breaking down
The process of breaking clots down seems impaired in (some) in Long Covid

🧵
Some in #LongCovid, however, do have elevated ddmer, generally mildly so --- and sometimes appearing in a relapsing--remitting fashion

There are also reported cases of catastrophic events down the disease course, such as delayed pulmonary embolism
We've been discussing abnormal ddmer levels in the #LongCovid community for example last year | see tweet 🔽

Just thinking aloud, but I'm very interested in the possibility of 👁 phases of the disease where clot breakdown might be partially happening |

Read 11 tweets
31 Dec 21
SARS-CoV-2 infection can lead to prolonged, multidimensional, potentially irreversible | degenerative brain 🧠 damage in both hospitalized and non-hospitalized covid patients 🔺️

[pre-print | extensive brain imaging from the UK biobank]

🧵

#LongCovid

medrxiv.org/content/10.110…
A significant strenght of the study is availability of brain 🧠 scans from the *same people* before and after SARS-CoV-2 infection
This allows to compare any changes to their brain across time, with pathological changes most likely caused by covid itself

#LongCovid #covidbrain
The study used multimodal MRI 🧠 scan of over 700 people who were assessed before and after the covid emergency.
Of these scans, analysis of the 401 people who had tested positive for SARS-CoV-2 revealed multidimensional effects on the brain | different brain areas

#LongCovid
Read 4 tweets

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