Gez Medinger
@gezmedinger
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Author of The Long Covid Handbook with @daltmann10 , published by @penguinUKBooks (see link). Represented by the Blair Partnership @TBP_agency
London
Joined April 2011
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It’s been an absolute privilege to represent the 2+ million long haulers in the UK, & many millions more worldwide in writing this book.
@daltmann
and I hope that it can become an indispensable companion for everyone navigating their recovery journey.
And it’s out today!
Happy publication day
@gezmedinger
and
@Daltmann10
An important publication of
#LongCovid
you can pick up this definitive guide today
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The proofs have just arrived and this has suddenly got very real! 📖
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Here’s the spread in the Telegraph today. Amazing to see this level of attention from traditional print media, and particularly given the article’s focus on the long neglected issue of ME/CFS.
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Now that The Long Covid Handbook is out in the world I‘ve decided that my only job is to ‘get better’.
Reinfection in Feb sent me back to square one, and I’ve got to do the hard work all over again, and not just keep pushing on through.
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The problem with the term ‘fatigue’ in Long Covid, and the hunt for a solution 🧵
Any term used to describe tiredness or lack of energy in healthy people falls spectacularly short of accurately capturing the crushing nature of the symptom in LC.
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One of the hardest things with LC (& no doubt ME/CFS too) is dealing with the ‘how come you can’t do this? When you could do that…’ from people around you (it’s often implicit or in subtext).
The (differing) spoon cost of certain activities can be totally invisible to others.
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Writing the chapter in The Long Covid Handbook on TREATMENT - in all shapes and forms. There won’t be room to cover everything, but I would like to make it as comprehensive as possible.
1) What has made the biggest difference for you?
2) What would you like to see covered?
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The British Ivermectin Recommendation Development meeting has just voted massively in favour of recommending Ivermectin in treatment for Covid-19 in the UK, based on the clinical evidence to date.
Excellent news. Next steps still to be determined.
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Not a surprise to anyone who’s had their life blown to bits for the last 3 years.
But great to see it studied/reported in these stark terms. Comparison one of our best tools given how difficult it is for healthy people to get their heads round it.
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In the first of a series of films investigating the subject of abnormal clotting (aka microclots) in Long Covid,
@doctorasadkhan
and I talk to Dr Jaco Laubscher, who has treated hundreds of long haulers for the condition.
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A lot of commotion over whether Noah Lyles should have run the Olympic 200m final last night whilst having Covid. 🧵
It’s easy to get cross with him for being irresponsible, and risking fellow athletes’ health & subsq races, BUT…
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It’s probably unreasonable to blame someone for not following guidelines/rules that don’t exist - especially when the stakes are so high and it’s potentially a once in a lifetime opportunity.
My beef with this is with govts generally and the IOC for not talking about it.
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A diagnostic test for Long Covid will unlock the next stage in research, profiling, phenotype identification, and quantifying results of treatment trials. This research brings us one big step closer.
Congrats to all involved!
So pleased to report that our Mount Sinai-Yale long COVID (MY-LC) paper with
@putrinolab
& others is now published!! Proud of the hard work of all who contributed. We found biological signatures that can distinguish people with vs. without
#longCOVID
(1/)
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POV: The mental calculation you do every time anyone suggests something nice to do, when you’ve got Long Covid.
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In this slightly terrifying pre-print, Visser et al. demonstrate ‘profound neuroinflammation in the pathophysiology of Long Covid’.
Might explain why I feel like I’ve been concussed for the last two years…
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Govts should ALL have guidance, that basically says:
- test if you feel unwell
- if pos, don’t go to work/school
- there are poss long term effects & rest is best
- we’re in this together. Let’s be responsible
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Which makes it all the more flummoxing that governments aren’t throwing more money at the problem, or treating it with any sense of urgency. Or indeed talking about it at all.
The economic cost of
#LongCovid
covid is staggering!
In the US,
#LongCovid
could result in 1.5 billion work hours lost in 2024 – a potential cost of more than US$152.6 billion
A report by
@TheEconomist
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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.
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Anyone else suffer with a lack of sleep resilience in LC? 9hrs is the old 7hrs (for feeling OK), and if I get a short night - say 6hrs, I feel as spanked as I would have done after a bender and 2hrs sleep pre-Covid.
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This tallies with my experience (my LC symptoms qualify as a diagnosis for ME/CFS) - muscle strength to do singular things (eg lifting a sofa) isn’t significantly affected, but anything requiring aerobic respiration = ☠️
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.
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Day 7 update. The grand experiment might just be a success. Managed 7 half-days skiing, averaging 20-25km a day. No relapses, some MCAS malarkey but overall it’s done me a power of good.
Will be making a film to discuss why I think it has in the coming week.
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Viral persistence in Long Covid is a particularly hot topic. In this film I talk to
@microbeminded2
about the evidence which is mounting up and why Occam’s razor starts to get more and more applicable.
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Sure I’m not the only one tweeting about this but fabulous to see
@resiapretorius
getting the opportunity to write a piece for the Guardian. The more clinicians whose radar this gets on the better, as well as the public at large!
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The IOC want everyone to be fit & healthy as best advert for the sport. It wants Lyles to run a WR, not come 3rd & leave in a wheelchair.
They should recommend masks in all communal indoor spaces. Prioritise ventilation. Test all athletes upon arrival at venues.
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Couldn’t be more stoked about this!
Reports suggest that 1.5m people in the UK are living with Long Covid.
#TheLongCovidHandbook
is the definitive guide to understanding, managing and treating the condition, written by leading experts
@gezmedinger
and
@Daltmann10
.
Find out more:
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Thinking about making a film discussing some of the most common misconceptions people have about Long Covid.
Here’s a few for starters:
- Only severe acute cases get it
- It’s rare
- It’s just ‘being a bit tired’
- The Long Covid clinics will sort you out
Hit me with yours!
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Well, we’ve cracked 2 million members of the worst club I’ve ever joined.
Absolutely staggering, and yet there’s still no official messaging (or even acknowledgement) from the govt on the subject 🤷♂️
Latest data on the prevalence of ongoing symptoms following coronavirus (COVID-19) infection in the UK
An estimated 2.0 million people living in private households in the UK were experiencing self-reported long COVID-19 as of 1 May 2022.
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It frustrates me hugely that Covid is still such a politically charged issue and it’s not in govt’s interests to offer common sense advice and guidance.
Whilst Long Covid (& increased risk of very bad thrombotic events) remains out of the conversation, it’s all too easy
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to pretend it’s ‘just a cold’, when it absolutely isn’t.
Let’s keep talking about Long Covid - because this isn’t a problem that’s going away any time soon.
(& FWIW I think Femke was at the very least ‘fighting something off’ last night too)
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I’m going to make a video talking about the complex relationship between pacing, rest, and PEM - and where autonomic conditioning might fit in (and why) as it seems counter-intuitive to the primary ‘rest and pace’ message.
Any particular Qs you’d like answered on the subject?
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Thank you to everyone who contributed to the megathread on Long Covid misconceptions.
I had to trim the list, but here’s the top 15 (in no particular order) - and the reasons why they’re hogwash.
Please do share with anyone who you think would benefit!
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If pos, isolate until test neg.
No racing / competing until test neg.
Would completely change behaviour, we’d have a better and safer games. At practically zero cost 🤷♂️
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You might have noticed the YouTube channel has been quiet recently - it’s because I’ve decided to prioritise my health & recovery over work (finally!).
So I’ve come out to Cyprus for 6 weeks and have put together a 5 point plan to hopefully kick start some improvement.
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Yep I’ve definitely got much lazier since running 3 marathons, now I just can’t be arsed to put the running shoes any more… let alone the pursue the career I’ve been passionate about for 20 years. 🤷♂️🤦♂️
@ELHopkins
@BBCNews
Mental. We had a covid a know most of.our friends and family. And it's nothing more than flu cold..long.covid it's laziness sorry
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How to avoid Long Covid? Couldn’t be a much bigger - or more important- question with Omicron rates exploding.
Realised there’s zero information out there so I had a go. Even if it helps 1 person avoid making the same mistakes I did it’ll be worth it.
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3 yrs ago today I was in meetings with film producers in LA.
Would never have expected 36mths later my work was being reviewed in The Lancet, not Variety!
But I’m so proud of what
@Daltmann10
and I achieved - and hopefully the book can continue to help long haulers everywhere.
On
#LongCovid
,
@Dr2NisreenAlwan
reviews The Long Covid Handbook by
@Daltmann10
and
@gezmedinger
, and folds in her own experience and wisdom
@TheLancet
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Hot topic in Long Covid - the recent literature showing (micro)clotting in long haulers. What does this mean? Do we all have it? Can we treat it?
I talk to
@doctorasadkhan
, who’s currently undergoing HELP Apheresis, to find out.
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Digital detox starts here - deleting social media apps off my phone and will be taking a couple of weeks (or more) off.
Time to reconnect with self and actually make a job out of this ‘convalescence’ thing!
See you all on the other side 🎄
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The most comprehensive analysis of what might be causing cognitive dysfunction in LC that I’ve seen yet.
Yes, it’s a complex picture - but that jigsaw puzzle is getting filled in, piece by piece.
Grateful for the opportunity to coauthor this review with the incredible
@michelle_monje
🙏🏼 We discuss pathobiology of
#longCOVID
in the central nervous system and speculate on chief mechanisms that contribute to this emerging neurological health crisis.
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This is an ABSOLUTE banger of a paper and it’s worth carving out 15 minutes of your day to sit down and digest the fantastic thread
@VirusesImmunity
has written summarising their findings.
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/)
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So in the absence of there being a better word, perhaps let me suggest an acronym.
How about… CEASE.
Complete Energy And System Exhaustion.
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Us first wavers are now TWO YEARS in to our Long Covid journey. How’s it going?
Following on from my recovery surveys at 6mths, 1yr & 18mths - here’s the latest!
It takes around 60 secs to complete & submissions/data are anonymous.
Please share.
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Day 2 experiment update. Slight headache but no major PEM. So back on the mountain!
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I’m interested in telling stories about how suffering LC has changed your life path or the way you think you’ll live in the future.
It is such a profound experience that many of us have found ourselves reevaluating what’s important to us.
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I’m writing the chap in The Long Covid Handbook on ‘How to help the people around you understand LC’. Whilst I have many thoughts of my own, I realise I have not had the sum total of experiences of this patient group!
What’s worked for you with family/friends/colleagues etc? 1/2
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We are now at the TWO and a HALF year mark since those of us who caught Covid in the first wave have been suffering with Long Covid symptoms.
So how are we getting on? To find out - here's my 6 monthly update symptom/recovery survey.
1/3
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Narcissist incapable of empathy shocker.
NEW: Boris Johnson wrote the word "bollocks" across a Dept of Health document on Long Covid, the Covid Inquiry has heard this afternoon. This and other extraordinary revelations about his handling of the pandemic, here
@theipaper
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I’ve been looking for that replacement word for ‘fatigue’ in Long Covid for a while now…
Word of the day is 'dumfungled' (19th century): worn out, used up, and totally spent. See also 'depooperit' and 'forswunk'.
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The pandemic won’t feel very over for you if you roll a 1 on this 10 sided die.
And to think I got grief for calling repeat infections akin to playing Russian roulette (on ITV news) 🤷♂️
Will happily stand by those comments until you need a hundred side die, minimum.
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85% of those with symptoms at 2 months will still be ill after a year. And we’ve not seen massive rates of recovery between 1 and 2 years.
For the 200,000 added to the ONS figures today this is hardly good news.
New paper on recovery and symptom changes in
#LongCovid
shows recovery is infrequent. Findings:
-Of Long Covid patients who were still sick at 2 months, only 15% recovered by 1 year!
-Of those who thought they were better, 33% subsequently relapsed.
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Ed Yong absolutely smashing it at Unite to Fight (live now).
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Arguments have raged over the differences between hospitalised and non hosp LC.
This paper has just found non-hosp has more thrombotic events and more fatigue. Defo think there’s a different disease ‘engine’ driving ‘mild’ acute cases that develop LC.
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American study in JAMA found LC was worse than lung cancer in terms of impact on quality of life.
@j_b_kennedy
I saw a tweet from a guy who beat cancer and now has Long Covid. He said that he would choose cancer every time…
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In this first of a 2 part series,
@doctorasadkhan
and I interview
@WesElyMD
, asking what it takes to get large scale treatment trials for Long Covid off the ground, and why there's one in particular that we've got our fingers crossed for.
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You do wonder if the reason why the words ‘Long Covid’ don’t appear in this article is intentional. And if so, why?
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There is SO much good science out there around ME/CFS that it beggars belief we’re not building on it more with the big LC research projects.
Transcript of a fantastic presentation by Dr Paul Cheney on CFS from 2013.
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In episode 2 of our ‘microclots’ series,
@doctorasadkhan
and I talk to
@resiapretorius
&
@dbkell
- about how long haulers blood compares to those with diabetes & ME/CFS, and which labs are blazing a trail right now to push the science forwards.
1/2
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18 months in & it seems like *most* of those who got Long Covid in the first wave are still sick.
But are we recovering? We need data to evaluate!
Quick 2min survey for ALL who have hauled since March 20, including- especially- those who have recovered!
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Yes, absolutely no joke.
Thanks
@SethMacFarlane
for being brave enough to raise the issue. Many with large platforms seem afraid to (particularly in the US?).
The condition is very, very real. And more debilitating than you could imagine - until you suffer yourself.
This is why, even now, I’ve never succumbed to hubris regarding the dangers of Covid. We REALLY want it to be “just a cold,” but it’s not a cold. It’s neurological, and it’s stealthier than us. Those who have friends with “long Covid” know it’s no joke:
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New film alert! Even if you’ve watched my previous work on dysautonomia, this is a must see.
Dr Lim is awesome, and I think there’s something that *everyone* with LC can take out of this, even if it’s just a reminder how important certain practice is.
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Thank you Dan!
This — by
@gezmedinger
&
@Daltmann10
— is brilliant and vital! (Also, what a fantastic cover)
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Faced some dark moments whilst living with Long Covid? Pretty sure everyone who’s suffered from it has done so.
I talk to clinical psychologist (& long hauler)
@sallyeriggs
- who recommends 5 simple strategies for helping you cope when times are tough.
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A while ago I said drip by drip the evidence bath for viral persistence was filling.
I think we’re almost at the point where we could get in and enjoy a long soak now.
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This is a really outstanding and important piece of work 👇
Worth reading for all interested in
#longcovid
Well done
@MichaelPelusoMD
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Here’s the final (bonus!) episode of the series. What is nattokinase? How might it help? And which other enzymes have clot busting reputations?
@doctorasadkhan
and I talk to
@resiapretorius
and
@dbkell
to find out.
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@ShaneyWright
The weird thing is that all becomes normal - the few times the fog has lifted for a short time it’s like suddenly being able to think in ‘colour’ again after being trapped in black and white for years.
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When I started talking about LC in April 2020, I was pretty sure a trilogy would cover it.
I can now present the *100th* film on the subject, and no end in sight!
2nd in the series on CCI/tethered cord, thanks
@doctorasadkhan
&
@jencurtinmd
!
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Bloody hell. It just keeps going up doesn’t it? If ever there was evidence that Omicron frequently leads to Long Covid, here it is.
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@nadine_dijkstra
Hi Nadine, I made a film recently based on everything we’ve learnt in the last 2 years on the subject. You’re absolutely not alone - 1.5m in the UK suffering ongoing symptoms at the moment.
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Those out there who’ve tried Nattokinase supplements - what dose have you been taking per day? 🤔
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Yes I’m sure those 2.5m people are all off sick due to ‘back and neck pain’ from working from home 🙄
Honestly 🤦♂️
Govt/ONS desperately want to brush the problem under the carpet don’t they?
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Finally got into the studio today to start recording my half of the audiobook version of The Long Covid Handbook.
@Daltmann10
has already done his bit - I hope listening to us both is a palatable way of consuming it for those for whom reading is off the table!
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For those observing that CEASE has morbid connotations, how about FADE:
F***ing Awful Depletion & Exhaustion
🔥🤣
By the way, this is intended to be the start of a conversation about how we describe ‘fatigue’ better.
I don’t have all the answers!
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Latest film is up!
@doctorasadkhan
and I talk to
@BhupeshPrusty
about reactivated latent viruses in Long Covid and ME/CFS.
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Here’s the results from the survey I posted a few weeks about looking at the impact of LC on dating, relationships and sex.
It’s even more alarming than I expected - a hugely overlooked part of the illness with massive impact on quality of life. 1/2
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ONS data: spot the moment of uptick in Long Covid cases. What was starting to register then? The Christmas Omicron wave - and it’s not slowing down. Expect to see the impact of the current wave in the next ONS review in 3 months. Think we’ll be cracking 2m by then.
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I try to avoid outrage as it’s not great for the autonomic system, but…
It is literally these people’s jobs to be on top of the research, and they’ve had THIRTY YEARS of ME/CFS papers.
Fundamental clinical principle of ‘do no harm’, right? 🤦♂️ And still they prescribe GET.
Help🙏
LC clinic physio + neurologist pushing GET. I sent the LC-Physio and World Physio guides, they wont have it: "by what mechanism can exercise cause damage"... can you point me to research🙏🙏
@LongCovidSOS
@CovidSolidarit1
@long_covid
@PutrinoLab
@dbkell
@gezmedinger
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A simple graphic representation of why pacing is key in LC (oh, hi there autonomic malfunction!).
In the old days, my HR would return to 60ish within 5 mins of a hard 5k race.
Now look at this (note horizontal axis contains 4hrs of data)
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Step 2 of the 5 point plan: HBOT.
Hyperbaric Oxygen has been talked about lots before for LC (including by me).
One of the few treatments that actually has some published evidence (for short term benefits at least).
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Hi everyone. I've been wanting to collect data on this ever since it became an issue but I needed to wait long enough for the dust to settle and draw some conclusions!
So here's a study asking what an Omicron infection does to our Long Covid journey. 1/2
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I’m going to file this in ‘not bloody surprising’, but ‘thank god it’s finally not just us saying it’.
“In 20% of those reporting
#LongCovid
symptoms, they observed significant thickening throughout parts of the vagus nerve that extend out from the neck & into the chest. Nerve thickening often results from inflammatory damage.”
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Your causality is up the spout. Long haulers wear masks because reinfection is a disaster, & might mean YEARS more suffering.
Reinfection 18mths ago has given me new symptoms I've still not shaken.
And of course mask wearing isn't just a selfish choice - it protects everyone.
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Stage 5 of ‘my job is to get better’:
Cryotherapy.
Whilst out in the Austrian alps next month I’ll do some more cryo. Effectively a cold shock at -100C for 2 minutes , the idea is it can ‘reboot’ the malfunctioning nervous system.
1/2
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Interesting to see an objective reflection of PEM. Did too much yesterday (see slightly raised HR).
Today been very quiet but felt terrible.
Rather than drop, resting HR is way up despite lack of activity.
But why? What is physiologically going on with PEM to do this? 🤔
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describing the brutal consequences of hypoperfusion and mitochondrial malfunction on this scale (pathophysiology TBC).
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Even the word ‘symptom’ to describe the experience seems reductive, as when it hits, it swamps and obliterates any other possible function.
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I wish media coverage made this more clear. SO many people catching Omicron in the last month still blissfully unaware of the longer term risks.
I think a lot of people assume
#LongCovid
is a continuation of the acute COVID symptoms, that just take a long time to get over.
In reality it is an often delayed onset of *new* neurological, immunological, cardiovascular, and systemic symptoms.
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24.1% of covid +ve individuals still reporting symptoms after 90 days, after a ‘mostly mild’ initial illness.
The numbers affected with Long Covid after this wave are going to be huge.
Long-term COVID-19 symptoms in a large unselected population | medRxiv
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@j_b_kennedy
Too much sympathetic nervous system activation - not enough deep sleep and relatively more agitated REM = weird dreams.
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There are also so many other invisible factors around any activity (what you had to do before / after to tolerate it, for example) that even the same activity on two different days may be wildly different prospects.
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‘Fatigue’ frequently appears no.1 in LC lists, both for frequency & its massive impact - but it gives those who haven’t experienced it a faulty impression of severity, as well as failing to accurately describe its essence.
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With recent research detailing importance of microclotting & tissue hypoxia in Long Covid, even more reason to suggest why hyperbaric oxygen therapy might be effective.
Love the hard chambers at - let’s see how I get on over the next few days.
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A fantastic - and very powerful - collaboration. I full encourage anyone who’s not downloaded and used Visible yet to do so - aside from the excellent app itself, the potential benefits for the whole community as a consequence of this research are huge.
Today, Visible is launching a research collaboration with neuroscientist David Putrino (
@PutrinoLab
) 🚀
David + the team at Mt Sinai have been relentless in pursuing answers for people with
#LongCovid
and
#MECFS
.
You can help them on this mission 🧵
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New film! I talk to
@Vickyvdtogt
and
@jeremy_rossman
about their recently published hypothesis, discussing how acid-base disruption could be a major driver of Long Covid.
Lots to think about here!
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Get your pitchforks out for me and
@doctorasadkhan
cos we’ve searched for answers in that place that must not be named…
Yes, ME/CFS sufferers have been here for decades and there is much we can learn from their struggles. Huge thanks to
@bendymarsh
.
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@HarryBoby4
That concussed feeling is the signature that I’ve done too much the day before - I can feel my brain tenderly ‘bouncing’ in my skull when I go down the stairs.
Can also happen just from too much cognitive work.
My finger of suspicion points at neuro-inflammation.
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Top class article based on interview with
@Daltmann10
in the Guardian today.
Can’t help there’s just a few of us in the street screaming that the emperor has no clothes, whilst the rest of the country ploughs blindly on.
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Very excited to present the first in a series of interviews with
@VirusesImmunity
.
We discuss the latest thinking around viral persistence & latent viral reactivation in Long Covid, and what outcomes we might expect from the ongoing Paxlovid trials.
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