Gez Medinger @gezmedinger Twitter profile

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Gez Medinger

2 years

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!

Cornerstone Press

@cstone_press

2 years

Happy publication day @gezmedinger and @Daltmann10 An important publication of #LongCovid you can pick up this definitive guide today

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Gez Medinger

@gezmedinger

2 years

The proofs have just arrived and this has suddenly got very real! 📖

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Gez Medinger

@gezmedinger

2 years

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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Gez Medinger

@gezmedinger

1 year

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. 1/4

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Gez Medinger

@gezmedinger

7 months

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. 1/8

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Gez Medinger

@gezmedinger

1 year

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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Gez Medinger

@gezmedinger

2 years

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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Gez Medinger

@gezmedinger

3 years

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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Gez Medinger

@gezmedinger

11 months

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.

Long Covid can impair quality of life more than advanced cancers, study says

Some patients’ health-related life quality scores worse than those of people with stage 4 lung cancer

www.theguardian.com

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Gez Medinger

@gezmedinger

2 years

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.

The 'Microclot' Pathology of Long Covid | With Dr Jaco Laubscher

This is the first of a series of films looking at the issue of abnormal clotting pathology in Long Covid - yes, the notorious micro clots. In this episode, D...

www.youtube.com

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Gez Medinger

@gezmedinger

8 months

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!

Prof. Akiko Iwasaki

@VirusesImmunity

8 months

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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Gez Medinger

@gezmedinger

7 months

POV: The mental calculation you do every time anyone suggests something nice to do, when you’ve got Long Covid.

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Gez Medinger

@gezmedinger

2 years

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…

Long COVID is associated with extensive in-vivo neuroinflammation on [18F]DPA-714 PET

A significant number of COVID-19 patients develop ‘long COVID’, a condition defined by long-lasting debilitating, often neurological, symptoms. The pathophysiology of long COVID is unknown. Here we...

www.medrxiv.org

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Gez Medinger

@gezmedinger

16 days

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.

Ziyad Al-Aly, MD

@zalaly

16 days

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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Gez Medinger

@gezmedinger

2 years

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.

The Long Covid Handbook | By Gez Medinger & Professor Danny Altmann

Cornerstone Press, an imprint of Penguin Random House, are to publish The Long Covid Handbook, a definitive guide to this pressing and little understood heal...

www.youtube.com

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Gez Medinger

@gezmedinger

2 years

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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Gez Medinger

@gezmedinger

7 months

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 = ☠️ 1/3 .

Protein may be linked to exercise intolerance in ME/CFS

A study suggested that high levels of a protein may reduce energy production in the muscle cells of people with ME/CFS.

www.nih.gov

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Gez Medinger

@gezmedinger

2 years

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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Gez Medinger

@gezmedinger

2 years

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.

The Evidence For Why Viral Persistence Might be Causing Long Covid |...

The idea of viral persistence has been a hot topic since early in the Long Covid story. But as time has gone on, more and more evidence has been mounting up....

www.youtube.com

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Gez Medinger

@gezmedinger

2 years

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!

Could microclots help explain the mystery of long Covid? | Resia Pretorius

My lab has found significant microclot formation in long Covid patients. Unfortunately, these are missed in routine blood tests

www.theguardian.com

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Gez Medinger

@gezmedinger

2 years

Couldn’t be more stoked about this!

Penguin Books UK

@PenguinUKBooks

2 years

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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Gez Medinger

@gezmedinger

2 years

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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Gez Medinger

@gezmedinger

2 years

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 🤷‍♂️

Office for National Statistics (ONS)

@ONS

2 years

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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Gez Medinger

@gezmedinger

11 months

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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Gez Medinger

@gezmedinger

2 years

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!

The Top 15 Misconceptions About Long Covid | But What is the Reality?

Despite vague attempts by the media to cover the subject, many huge misconceptions about Long Covid persist. I put a shout out on twitter to gather the most ...

www.youtube.com

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Gez Medinger

@gezmedinger

6 months

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. 1/5

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Gez Medinger

@gezmedinger

2 years

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. 🤷‍♂️🤦‍♂️

Anna

@AnnaBiba5

2 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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Gez Medinger

@gezmedinger

2 years

Wondering why fatigue is the #1 symptom in Long Covid? Cos it sure as hell isn’t ‘deconditioning’. I talk to @docade about his new paper, describing the link between dysfunctional metabolism and microclotting, viral persistence, dysautonomia and POTS.

The Puzzle Comes Together - Why Dysfunctional Metabolism Might...

In this film I talk again to Dr Ade Wentzel, who has co-authored a new paper looking at the metabolic dysfunction present in Long Covid, and how it is connec...

www.youtube.com

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Gez Medinger

@gezmedinger

2 years

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.

How To Avoid Long Covid | The 5 Top Tips - Drawn From Latest Research

If you've just found your way to this film, it's probably because there's pretty much NO OTHER advice, ANYWHERE on the topic of how to avoid Long Covid. But ...

www.youtube.com

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Gez Medinger

@gezmedinger

1 year

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.

Eric Topol

@EricTopol

1 year

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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Gez Medinger

@gezmedinger

3 years

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.

Is (Micro)clotting Causing Long Covid? | The Role of HELP Apheresis...

At the end of my last film, I promised I'd be talking about what I think is causing Long Covid. Well, it made sense to cover this rather hot new topic at the...

www.youtube.com

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Gez Medinger

@gezmedinger

1 year

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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Gez Medinger

@gezmedinger

2 years

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.

Prof. Akiko Iwasaki

@VirusesImmunity

2 years

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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Gez Medinger

@gezmedinger

2 years

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.

Prof. Akiko Iwasaki

@VirusesImmunity

2 years

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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Gez Medinger

@gezmedinger

7 months

So in the absence of there being a better word, perhaps let me suggest an acronym. How about… CEASE. Complete Energy And System Exhaustion. 6/8

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Gez Medinger

@gezmedinger

2 years

Day 2 experiment update. Slight headache but no major PEM. So back on the mountain!

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Gez Medinger

@gezmedinger

2 years

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. 1/3

Long Covid - 2 Years In: Longitudinal Recovery Study

This short survey is for those who contracted Covid in the first wave - March/April 2020 and is intended to shed light on the rates of recovery amongst the long hauler population since then, includ...

docs.google.com

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Gez Medinger

@gezmedinger

2 years

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. 1/2

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Gez Medinger

@gezmedinger

2 years

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

Long Covid - 2 1/2 Years In: Longitudinal Recovery Study

This short survey is for those who contracted Covid in the first wave - March/April 2020 and is intended to shed light on the rates of recovery amongst the long hauler population since then, includ...

docs.google.com

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Gez Medinger

@gezmedinger

2 years

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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Gez Medinger

@gezmedinger

6 months

I’ve been looking for that replacement word for ‘fatigue’ in Long Covid for a while now…

Susie Dent

@susie_dent

6 months

Word of the day is 'dumfungled' (19th century): worn out, used up, and totally spent. See also 'depooperit' and 'forswunk'.

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Gez Medinger

@gezmedinger

8 months

Narcissist incapable of empathy shocker.

Jane Merrick

@janemerrick23

8 months

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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Gez Medinger

@gezmedinger

1 year

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.

TIME

@TIME

1 year

1 in 10 people get Long COVID after Omicron, a new study finds

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Gez Medinger

@gezmedinger

2 years

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.

Hannah Davis

@ahandvanish

2 years

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. 1/

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Gez Medinger

@gezmedinger

2 years

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.

On the single and multiple associations of COVID-19 post-acute sequelae: 6-month prospective cohort...

Medical research is progressing to clarify the full spectrum of sub-acute and long-term effects of the post-COVID-19 syndrome. However, most manuscripts published to date only analyze the effects of...

pubmed.ncbi.nlm.nih.gov

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Gez Medinger

@gezmedinger

2 years

American study in JAMA found LC was worse than lung cancer in terms of impact on quality of life.

Georgi Parvanov

@GeorgiParvanov4

2 years

@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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Gez Medinger

@gezmedinger

9 months

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.

The Most Promising Drug For Long Covid You've Never Heard Of | With...

In this film, the first of two - Dr Asad Khan and I ask intensive care physician Dr Wes Ely about how he became involved in Long Covid, what it takes to get ...

www.youtube.com

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@gezmedinger

2 years

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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@gezmedinger

2 years

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. 1/2

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@gezmedinger

1 year

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

'Microclots' in Long Covid: The Latest Research | With Prof Resia...

In this second film of the microclots series, Dr Asad Khan and I talk to Professors Resia Pretorius and Doug Kell about their research into abnormal clotting...

www.youtube.com

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@gezmedinger

3 years

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!

Long Covid - 18 Months In: Longitudinal Recovery Study

This short survey is for those who contracted Covid in the first wave - March/April 2020 and is intended to shed light on the rates of recovery amongst the long hauler population since then, includ...

docs.google.com

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Gez Medinger

@gezmedinger

2 years

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.

Fixing Your Autonomic Function in Long Covid | With Dr Boon Lim (Film...

Dysautonomia is one of the most common symptom drivers in Long Covid, and in this film I talk to Dr Boon Lim, Cardiologist and Electrophysiologist, and clini...

www.youtube.com

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@gezmedinger

1 year

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.

Seth MacFarlane

@SethMacFarlane

1 year

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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@gezmedinger

2 years

The great experiment begins. 🤞

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@gezmedinger

2 years

Thank you Dan!

Dan Davis

@dandavis101

2 years

This — by @gezmedinger & @Daltmann10 — is brilliant and vital! (Also, what a fantastic cover)

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@gezmedinger

2 years

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.

Five Psychological Strategies to Help You Deal with Long Covid | With...

Now we’re approaching two years of Long Covid for many sufferers the problem of how to stay sane and keep your mental health afloat has never been more impor...

www.youtube.com

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@gezmedinger

1 year

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.

Can Nattokinase Help Break Down 'Microclots'? | With Prof Resia...

The social media rounds have been aflame with long haulers trying the enzyme Nattokinase - and others (like Serrapeptase and Lumbrokinase) - rumoured to have...

www.youtube.com

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@gezmedinger

10 months

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. 1/3

Danny Altmann

@Daltmann10

10 months

This is a really outstanding and important piece of work 👇 Worth reading for all interested in #longcovid Well done @MichaelPelusoMD

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@gezmedinger

2 years

@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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@gezmedinger

1 year

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 !

Do you have CCI, Chiari or Tethered Cord? The Symptoms to Look Out...

In this film, the second of a short series, Dr Asad Khan and I talk to Dr Jen Curtin, a specialist in ME/CFS and associated structural disorders. In the firs...

www.youtube.com

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@gezmedinger

2 years

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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@gezmedinger

1 year

Those out there who’ve tried Nattokinase supplements - what dose have you been taking per day? 🤔

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@gezmedinger

2 years

@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.

How To Avoid Long Covid | The 5 Top Tips - Drawn From Latest Research

If you've just found your way to this film, it's probably because there's pretty much NO OTHER advice, ANYWHERE on the topic of how to avoid Long Covid. But ...

www.youtube.com

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@gezmedinger

2 years

This is worth the relapse to be fair!

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@gezmedinger

1 year

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?

Record numbers not working due to ill health

Mental health issues and back and neck pain have contributed to the rise in long-term sickness.

www.bbc.co.uk

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@gezmedinger

2 years

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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@gezmedinger

7 months

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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@gezmedinger

11 months

Latest film is up! @doctorasadkhan and I talk to @BhupeshPrusty about reactivated latent viruses in Long Covid and ME/CFS.

Reactivated Latent Viruses in Long Covid and ME/CFS | With Dr Bhupesh...

In first of a series of three videos, Dr Asad Khan and I talk to virologist Dr Bhupesh Prusty about the latest research that shows how reactivated latent vir...

www.youtube.com

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@gezmedinger

2 years

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

The Impact of Long Covid on Sex, Dating and Relationships | Exclusive...

An often neglected part of the assessment of the impact of Long Covid, or indeed any chronic illness, is the crushing impact on relationships, the ability to...

www.youtube.com

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@gezmedinger

2 years

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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@gezmedinger

2 years

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.

Jon West 🏴󠁧󠁢󠁷󠁬󠁳󠁿, on Mastodon @westiejon

@jonnysoapbox

2 years

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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@gezmedinger

1 year

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) 1/3

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@gezmedinger

6 months

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). 1/5

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@gezmedinger

2 years

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

Impact of Omicron Infection on Long Covid

This survey is for people who have caught Omicron either whilst suffering from Long Covid, or after having recovered from Long Covid. You should only complete it if you have recovered from an acute...

docs.google.com

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@gezmedinger

11 months

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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@gezmedinger

1 year

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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@gezmedinger

10 months

I’m going to file this in ‘not bloody surprising’, but ‘thank god it’s finally not just us saying it’.

charlos

@loscharlos

10 months

“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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@gezmedinger

2 years

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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@gezmedinger

7 months

describing the brutal consequences of hypoperfusion and mitochondrial malfunction on this scale (pathophysiology TBC). 5/8

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@gezmedinger

7 months

Even the word ‘symptom’ to describe the experience seems reductive, as when it hits, it swamps and obliterates any other possible function. 2/8

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@gezmedinger

2 years

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.

Hannah Davis

@ahandvanish

2 years

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. 1/

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@gezmedinger

7 months

‘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. 3/8

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@gezmedinger

1 year

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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@gezmedinger

2 years

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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@gezmedinger

2 years

@j_b_kennedy Too much sympathetic nervous system activation - not enough deep sleep and relatively more agitated REM = weird dreams.

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@gezmedinger

4 years

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.

Danny Altmann

@Daltmann10

4 years

Long-term COVID-19 symptoms in a large unselected population | medRxiv

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@gezmedinger

6 months

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.

Visible

@visible_health

6 months

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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@gezmedinger

1 year

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!

The Acid-Base Disruption Hypothesis for Long Covid | With Vicky Van...

Today I’m talking to Vicky van der Togt and Dr Jeremy Rossman about why an acid-base imbalance might be the missing link to understanding what’s causing Long...

www.youtube.com

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@gezmedinger

3 years

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 .

Fatigue, Pacing and PEM Management | Lessons from ME/CFS - With Dr...

In Episode 3 of our expert interviews series, Dr Asad Khan talks to Dr Ben Marsh about his experience of ME/CFS over the last 4 years, and what lessons the L...

www.youtube.com

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@gezmedinger

11 months

@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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@gezmedinger

1 year

Stage 4 of ‘my job is to get better’: Convalescence. Across Dec & Jan I’m going to escape rainy polluted London and go to the alps, for some good old fashioned rest, including a full digital detox and *actually* laying off the work for a bit. 1/2

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@gezmedinger

8 months

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.

The Latest on Viral Persistence & Paxlovid Trials in Long Covid |...

Welcome to the first of a three part interview series with Professor Akiko Iwasaki. The series will cover the thorny subject of viral persistence, vaccine in...

www.youtube.com

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@gezmedinger

2 years

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.

Long Covid could create a generation affected by disability, expert warns

Prof Danny Altmann, immunologist at Imperial College London, says UK’s approach fails to take the impact of infections seriously

www.theguardian.com

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@gezmedinger

1 year

Herein lies one of the greatest and cruellest ironies by. Spot on.

Daria Oller, PT, DPT, ATC 💖💜💙🏳️‍🌈

@OnTapPhysio

1 year

I dont think people realize how much discipline living w #LongCovid takes, especially if you were previously a go-getter type. We have to constantly stop ourselves and say no to things we want to do, because they will make our symptoms worse. We have to miss out on life to live.

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@gezmedinger

7 months

Answer: No. Unless you completely discount the risk of Long Covid (in all its forms) and other consequential cardiovascular mayhem. This is not a narrative (or indeed article) that pleases me.

Changing nature of Covid: Is it just a regular winter bug now?

There were more flu deaths than Covid ones last winter - but for some, the fear remains. Why?

www.bbc.co.uk

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@gezmedinger

1 year

My presentation at the summit is live now! I talk about the entire treatment landscape for Long Covid, as it exists at the moment - from what you might get from your pharmacy, to your GP, to your specialist, and then some of the wilder things out there internationally. 1/4

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@gezmedinger

1 year

I think the most insightful part is the look on Oonagh’s face in the final two seconds when she says ‘I’ve just been dealt a bad hand’. In that moment you can see the grief and loss of what she loves - and how she’s still struggling to deal with it, 3 years on.

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@gezmedinger

8 months

In part 2, @doctorasadkhan and I ask @WesElyMD about how he treats Long Covid patients, what other treatment trials he'd like to see happen, and what we can learn from ME/CFS.

How Should Doctors Treat Long Covid? | With Dr Wes Ely

In this second of two films with Dr Wes Ely, Dr Asad Khan and I ask him about how he’s treating Long Covid patients at the moment, what his wish list would b...

www.youtube.com

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@gezmedinger

2 years

Thanks to all who completed the 2 year recovery survey - here are the results. How many have recovered & how did they do it? Also a comment on & some refs for my last film which stirred the pot enough for me to have to take a week off twitter (!)

Long Covid at Two Years: How Many Have Recovered?

I've previously done cross sectional surveys of the first wave long haulers at the 6, 12 and 18 month marks. Now that we've clocked 2 YEARS with the conditio...

www.youtube.com

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@gezmedinger

1 year

Episode 3 in the ‘microclots’ series - where @doctorasadkhan and I talk to @resiapretorius and @dbkell about how clots could cause PEM, what dream treatments they’d like to see trialled, and how it all fits into the big picture.

How 'Microclots' Fit Into the Long Covid Puzzle | With Prof. Resia...

n this third film of the micro clots series, Dr Asad Khan and I follow up with Profs Pretorius and Kell to dive in a bit deeper in to the subject. We ask abo...

www.youtube.com

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