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Spoonseeker
@spoonseeker
Been blogging on ME (myalgic encephalomyelitis), aka CFS (chronic fatigue syndrome). Now here’s #Longcovid . Best to sort your problems before another arrives.
Leeds, United Kingdomspoonseeker.comJoined January 2016

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Saddening news from the Netherlands: "A majority of people with #LongCovid who are registered with state benefits agency UWV have been so disabled by the virus they are no longer fit for work." There is no reason it should be different in other countries.
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This article is interesting on LongCovid, one could replace that with ME/CFS and what's sad is every topic discussed, eg O2 not getting into muscles, white blood cells compromised, need for energy, acquired dysfunctions, ME researchers identified decades prior to LongCovid...
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Imagine! A powdered drink three times a day. Soon. Dare we hope? theguardian.com/science/2022/j
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In Clare’s thread you can substitute the word #LongCovid with #ME and this is, very much, the situation ME sufferers have experienced for decades. Tragic that LongCovid sufferers are now having to deal with identical issues.
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I wasn’t informed that I was at high risk of #LongCovid or prioritised in the vaccine roll-out. I wasn’t told that due to my LC, “severe and prolonged” vaccine side effects were likely. I wasn’t given antivirals on reinfection. My LC remains untreated. 1/ @sajidjavid
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What sort of health system denies the reality of a medical condition that's visibly killing a patient, and furthermore, denies them palliative care? I'm not sure if I can ever forgive the psychiatrists who deceived the medical establishment into thinking ME isn't real. #MECFS
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An important thread:
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After careful consideration, I have decided to go public with this 🧵My daughter Jasmin has had #LongCOVID for the past 16 months. I tried for >6 months to get her research bloods done in the UK. Hitting brick walls, in desperation took her to Germany in Feb. #longcovidkids
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"An $8 million clinical trial of a mitochondrial enhancer, no less, in #MECFS? I thought I was hearing things but it was so, and, in the end, it even makes sense given how rapidly some parts of this field are moving forward. But first, a little backstory."
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Let’s hope this leads to some acknowledgment of the scale of the problem! But there is also the very substantial issue of all those who don’t get hospitalised with COVID yet end up with #LongCovid nevertheless.
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Only 29% of UK #Covid hospital patients recover within a year - women are worst affected. #LongCovid theguardian.com/world/2022/apr
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Hospitalisation is not the only adverse outcome. Long Covid often follows a mild infection and can lead to organ damage and chronic disability. There is currently no treatment or cure. Long Covid is anything but mild. Those downplaying infection are dangerous and irresponsible.
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Remember all that media noise about #omicron hospitalizing young kids with severe covid? This paper concludes: “Risks for severe clinical outcomes in children infected with Omicron variant were significantly lower than those in the matched Delta cohort”👇 jamanetwork.com/journals/jamap
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It would be inequitable + highly discriminatory if the govt accepted the recommendations of the Coronavirus APPG but ignored other chronic post-infectious diseases like ME/CFS. Rather like saying, in relation to cancer, we'll take Non-Hodgkin Lymphoma seriously but not Leukemia.
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Trailer on used ‘COVID Pandemic’ in the past tense this morning. No, I don’t think so….
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Great timing as new cases hit 316000 admissions increasing and cases over 60 surging and we haven’t mentioned Long Covid yet . No sign of a slowdown - thanks for sharing twitter.com/mishwoz/status…
300k/day! How does anyone think this is ok when we already know mild/asymptomatic cases lead to vastly increased risks of cardiac/clotting events, let alone Long Covid, let alone longer term unknown consequences?!
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Replying to @gezmedinger and @timspector
Thanks Gez. Helpful for anyone wanting data to backup their ongoing precautions And @timspector's stats are even higher today!
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Here’s the results of my study - does catching Omicron send you back to square one of Long Covid? And does vaccination help? With ’s Zoe figures reckoning on 250k infections a day in the UK at the moment, this couldn’t be more timely!
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Thrilled that & are writing a handbook on #LongCovid. About time there was a definitive resource. Looking forward to my contribution- and to October when it is due out….
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So excited to announce @cstone_press & @PenguinUKBooks will be publishing The Long Covid Handbook, which I’ll be writing with @Daltmann10. The intent is to create a definitive resource that brings everything we’ve learnt about LC together into 1 place. youtu.be/K3oA-YN_Dls
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Time to take this to the next level. We need the same ambition for #LongCovid and other post-viral conditions. History shows that it can be done. Share if you agree!
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This will go down in history as one of science and medical research's greatest achievements. Perhaps the most impressive. I put together a preliminary timeline of some key milestones to show how several years of work were compressed into months.
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