Ror Preston
@RorPreston
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Founder @wecrunchme | Data-informed advocacy to accelerate research on infection-associated chronic illnesses (IACIs) 💙 | #MECFS #LongCovid
United Kingdom
Joined April 2022
@Virus2Host I won't comment on the similarity of long COVID to HIV/AIDS, as that's not my area of expertise - but c. 40-60% of patients with LC meet the diagnostic criteria for ME, and so have COVID-triggered ME. That is pretty well established now across multiple studies
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Our Cure ME/CFS and Cure Long COVID caps are back on sale - grab one if you wanna (link below) 🧢👀 #MECFS #LongCovid
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Dear @labourlewis @AdrianRamsay @MPGeorgeFreeman As MPs in Norfolk, I wish to draw your attention to the cutting edge biomedical research at @TheQuadram in Norwich, to help unravel the horror disease that is ME/CFS. We would so appreciate your advocacy in parliament!
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@tessamunt thought this might be useful for your advocacy in parliament, for understanding which ME/CFS research groups exist in the UK, and need support to scale their work!
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Thank you also to our volunteer contributors to our ecosystem databases, that made this report possible - including @Michaeltikus
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Earlier this year, @wecrunchme created a report on the UK ecosystem emerging around solving ME/CFS and long COVID, in collaboration with the wonderful @ThereForME_UK 🌱 The goal is to help sharpen our advocacy, and make it clear where support is needed & where gaps remain. V
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I am once again asking you to run a birthday fundraiser for ME/CFS research 🎂🫡
Noch eine Woche doch schon über 4000€ für ME/CFS Forschung 💪🏻 Dankbar für jede Spende und RT 🙏 Ich weiß, nicht jeder hat ein Umfeld, dass finanziell so viel leisten kann. Aber wir sind so viele Betroffene, sogar 10€ pp würden einen Unterschied machen! https://t.co/9lXTH3jRaJ
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Schon über 2500€ für ME/CFS Forschung gesammelt und unzählige positive Nachrichten erhalten! Geburtstags-Spendenaktionen schaffen Aufmerksamkeit, Aufklärung und fördern Forschung 🎂 danke an alle bisherigen Spender 🙏 #MECFS #LongCovid #Hoffnung
https://t.co/9lXTH3jjlb
betterplace.org
In wenigen Tagen ist mein 26. Geburtstag, doch zum zweiten Mal freue ich mich nicht darauf. Warum? Ich habe seit zwei Jahren ME/CFS. Seitdem ist mein einziger Wunsch, endlich wieder gesund zu...
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@Saffiya_Khan1 @TrudiG @SkyNews @KamaliMelbourne I actively hated lockdowns, cried my way through them and felt I was neglecting my children while they were stuck at home and I tried to work. Would have that again forever, compared to what I have now, which is two chronically ill children with long covid who can’t function
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