another Prime Minister. There must be a general election. And if they try to pick another PM without ref to the country I fear taking to the streets is the only option. They have had 12 years. The current crisis is entirely of their making. They have to go. The lot of them. 2/2
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.
Spoonseeker’s Tweets
The Tory Party elected Johnson as leader. The Tory Party elected Truss as leader. Between them they have come close to destroying this country. Never forgive. Never forget. And when these MPs get rid of her (as they will do shortly) we cannot allow the Tory Party to choose 1/2
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How many good, innocent people have to die or loose their lives for the world to give a shit about us? This is a curable illness. Literally all we need is for the world to care.
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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Brilliant from my lovely colleague and spot on - repeated infections are *not* the way out of the pandemic !
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Where’s the herd immunity? Our research shows why Covid is still wreaking havoc theguardian.com/commentisfree/
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Woohoo! This book is so good and so needed.
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🚨A new study using a novel MRI technique finds that #LongCovid symptoms are largely driven by the impaired ability of red bloods cells to absorb oxygen. This was observed in each of 34 participants.
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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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High levels of exercise increase predisposition to subsequently developing ME/CFS. Not a new paper but I didn’t know this was out there till now. Sound familiar? 🤔
sciencedirect.com/science/articl
Thanks to for the link!
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Like a lot of #pwME I feel it is absolutely essential to include Drs Weir and Speight with all their years of experience in these important meetings. Please support this petition. twitter.com/swastrosarah/s
This Tweet is unavailable.
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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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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/
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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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My Aunt died in an old peole’s home. In the year before she died she had a massive ME relapse. By that point she couldn’t communicate. They kept trying to get her up and move her around, We constantly pleaded for the nursing staff to let her rest.
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Looking forward to #MyalgicEncephalomyelitis APPG report, Rethinking ME, launch today in Westminster. Now just got to work out what I’m going to say! Two hard acts to follow. Watch tweets for pics and updates from 3pm
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First time in a while: Leeds ME Network is holding a meeting ‘in person’ this Tuesday 17 May starting at 12-30 pm. Venue is Meanwood Park open air Cafe. Look for the green signs on our table. All with #mecfs or #Longcovid plus friends, carers etc welcome
leedsmenetwork.yolasite.com
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Thank you so much for the support yesterday for our virtual #MillionsMissing event 💙
We've now launched a JustGiving page for donations to help fund our in-person event later this year.
You can visit our JustGiving page here - ow.ly/eqmz50J7otQ
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🚨 A new review suggests that pathobiological processes involving central nervous system dysfunction due to impaired or pathologically reactive neuroglia (brain cells that serve the immune system) may explain #MECFS as well as many cases of #LongCovid. frontiersin.org/articles/10.33
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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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A musing- why are so called ‘functional’ disorders not called ‘dysfunctional’. It’s an oxymoron of epic proportions. ‘Dysfunctional neurological disorder’ would at least be an accurate description. How did the word functional start being used this way?#NEISvoid #LongCovid #MECFS
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It’s a new week so a reminder that dizzy or palpitating patients may have POTS, rashy itchy patients may have MCAS and bendy patients may have EDS. Fatigued patients with long Covid or ME/CFS may even have all 3. #POTS #MCAS #MECFS #LongCovid #NEISvoid #EDS #chronicillnesstrilogy
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We go as we learn Delighted to bring together top scientists of neurology and who help us see the big picture of covid damage. Full interview👉 youtu.be/pRLIwANkOGY
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Some days grief pours in as I’m faced yet again with my new #LongCovid and #MECFS limitations. It’s my beloved’s bday and I can’t even make him a cake or dinner which is something I love so much to do. I feel so heartbroken for him, myself, my kids that every day is so changed.
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A recording of our Science webinar is now available on our YouTube channel. 👀
You can also find an audio recording and the transcript at our website on the Blog page.
youtube.com/watch?v=qNX15_
#decodemestudy #decodeme #biomedicalresearch #meresearch #pwME
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Researchers studying the effect of Leronlimab on #LongCovid may have found a surprising clue, one that contradicts their initial hypothesis. An abnormally suppressed immune system may be to blame, not a persistently hyperactive one as they had suspected.
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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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LIVE: Joined by guests and , and chaired by , today we are discussing concerns surrounding Long Covid. With hosting and on numbers
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Highlights from today’s Independent Sage on #LongCovid. Mentions overlaps with #MECFS, PEM, importance of pacing, lack of education & lack of acceptance of the underlying biology.
Long COVID clinics are not enough and not enough research looking at the underlying pathology.
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PSA: COVID-19 isn’t “just a cold,” isn’t “a respiratory virus,” and “mild” doesn’t mean what you think it does.
If you “aren’t scared of COVID”, this thread is for you.
(1/
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Please R/T if it opens your eyes.
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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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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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