Joined January 2022
Long Covid Patient Action Group UK retweeted
Just a reminder that this @WHO webinar on #longcovidkids is tomorrow at 12.30 BST (1.30 EST) Link to register here; who.zoom.us/webinar/register…
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Long Covid Patient Action Group UK retweeted
"Given the immense burden for the economy overall, whatever is spent to understand, treat, & prevent #LongCovid pales in comparison to the economic costs. There’s zero argument against spending money—even $50 billion to figure this out.” harvardmagazine.com/2022/09/…
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Long Covid Patient Action Group UK retweeted
”our results may also bear relevance for neurological sequelae of COVID, including memory & attention deficits, dysautonomia, delusion & psychosis. Specifically, both brainstem damage & autoimmunity have been implicated in #LongCovid” ⁦ thelancet.com/journals/ebiom…
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Long Covid Patient Action Group UK retweeted
this is an excellent reference and really speaks to something I have been talking about re CBT trials, design bias built in - getting the result you want, or changing methods post-start if you dont aka the PACE trial. A topic I will be writting up this year!
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Long Covid Patient Action Group UK retweeted
Before COVID, I never could have imagined that so many highly vocal public health experts, virologists, immunologists, medical doctors, and infectious disease specialists would be pro-virus and do everything they can to increase the amount of infectious disease during a pandemic.
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I don't usually point out people who are spreading misinformation on Twitter. But THIS one is partly to blame for anti mask, anti-clean air mitigations in Scottish schools. She uses terms she doesn't even understand to appear knowledgeable and people in power accept it.
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Long Covid Patient Action Group UK retweeted
The finding below is consistent with this Harvard preprint (medrxiv.org/content/10.1101/…) that used sensitive Simoa assays on #LongCovid blood. They found SARS-CoV-2 spike antigen in a majority of patients up to 12 mo. post-diagnosis (suggesting active #SARS-CoV-2 reservoir in tissue)
Replying to @VirusesImmunity
Not only did LC have higher levels of IgG against Spike, but also had IgG against distinct epitopes within the Spike protein, identified by @S_Tabachnikova with @serimmune Kathy Kamath. See the distinct peaks in purple vs. controls. (11/)
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Long Covid Patient Action Group UK retweeted
A huge thank you to @thetimes for this 8-page spread in the Sunday Times Magazine. Featuring @doctorasadkhan, Jasmin’s story and others. Link to article here; thetimes.co.uk/article/the-t…#longcovid #LongCovidKids
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Long Covid Patient Action Group UK retweeted
Follow up article to Tess' piece last week in @Independent_ie. Tess is fighting for our government to take #school safety seriously. We're grateful.If any parents are interested in collaborating with her to provide safer education experience pls have a read.#COVID19 #LongCovid
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We need #BC007 to be approved for #LongCovid and #MECFS urgently. The German govt are not prioritising this, the timeline is unacceptable. How can we collectively apply pressure to expedite this? Or are we seriously looking at crowdfunding this? #researchlongcovid
BerlinCures hat auf seiner Webseite den momentanen Stand der laufenden Zulassungsverfahren für #BC007 aktualisiert. Der Start der Zulassungsstudie für #LongCOVID scheint jetzt auf Anfang 2023 festgelegt worden zu sein.
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@jillgallard @FCDOGovUK is this something you are able to influence at all? At least 2.2 million people in the UK have #LongCovid and #BC007 shows promise as an effective treatment (also for #MyalgicEncephalomyelitis ) People have been debilitated for 2yrs+ already. Please help.
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Long Covid Patient Action Group UK retweeted
The brain's drainage system has been theorized to be dysfunctional in ME/CFS. In fact, the first time Dr. Fauci mentioned #LongCovid in July 2020, he said that it looked like ME/CFS & that there might be cribriform drainage issues. 1/
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Long Covid Patient Action Group UK retweeted
@elisaperego78 There's a huge amount of post-COVID polyarthritis. Standard screening is often negative. We will need to refine our auto-antibody panels to help Dx and Rx 🙏🏻
"1 marker, Rheumatoid Factor, was elevated, but not as dramatically as typical in rheumatoid arthritis. One other was a bit elevated, but most were in the normal range. It wasn’t a pattern associated with any “normal” arthritis-related condition" 48hills.org/2022/08/sleepwal…
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Long Covid Patient Action Group UK retweeted
Seriously? Two years into the pandemic and this is your public health messaging? COVID is airborne- wear a well-fitting FFP2/3 mask, ventilate, clean air (air filtration), and avoid crowded indoor spaces if you can.
Although #coronavirus restrictions have been lifted in Scotland, the virus has not gone away. Wash your hands regularly to protect yourself, and cover your nose and mouth if coughing or sneezing to protect other. Find out more: gov.scot/coronavirus
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Long Covid Patient Action Group UK retweeted
Our COVID #LongHaulers are still suffering & their pain has been ignored by lawmakers for too long. We must meet the moment with bold investments that meet the scale & scope of the #LongCOVID crisis. We can start by passing my bill to #TREATLongCOVID. politico.com/news/2022/08/08…
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Long Covid Patient Action Group UK retweeted
More than two years of amazing #LongCovid collaboration and I FINALLY get to meet the amazing @VirusesImmunity in 3D 🤩❤️🔥 📸: @hmkyale
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Long Covid Patient Action Group UK retweeted
🚨"Data strongly suggest that COVID-19 leaves a persistent capillary rarefication (a reduction in vascular density) even 18 months after infection. Whether, to what extent, and when the observed damage might be reversible remains unclear." #LongCovid link.springer.com/article/10…
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Long Covid Patient Action Group UK retweeted
Very excited to share our latest research on immunological features of #LongCovid. Our 2+ year collaboration with @PutrinoLab with many other fantastic colleagues and patients - Mount Sinai Yale Long COVID (MY-LC) study by @sneakyvirus1 et al. 🧵(1/) medrxiv.org/content/10.1101/…
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