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Reposted by Didier

Tom Kindlon @tomkindlon.bsky.social · 18h

5-page @scienceforme.bsky.social post-exertional malaise ( #PEM ) fact sheet
www.s4me.info/docs/PEM_Fac...

Headings:
-Characteristics of PEM
-Symptoms of PEM
-Exertion and other PEM triggers
-Effects of exertion that are not PEM
-Living with PEM
-Examples of PEM
-Research on PEM

#MEcfs #CFS #PwME

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Reposted by Didier

Bateman Horne Center @batemanhornecenter.bsky.social · 1d

A new study sheds light on why people with ME/CFS feel worse after activity.
Findings reveal an immune system on edge, energy production that falters, and gut barrier leaks fueling inflammation.
Read more: https://bit.ly/4q3i8sV
#MECFS #PEM #Research

When the Body’s Alarm Won’t Turn Off

Blog Summary Imagine if a fire alarm kept ringing long after the smoke was gone. That’s similar to what happens in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), where the body seems…

bit.ly

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Didier @medidier.bsky.social · 18h

Merci!! Il nous faut BEAUCOUP plus de visibilité et investissement! D'autres pays avancent enormement pointant effectivement le tronc cérébral et autoimmunité aussi! En France on reste invisibles! cette maladie est une vraie infra-vie... Nous sommes avec vous et on a besoin de vous...! 🤞💪

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Reposted by Didier

Grand Continent @grandcontinent.bsky.social · 2d

Le prix Nobel de médecine décerné à Mary Brunkow, Fred Ramsdell et Shimon Sakaguchi, ouvre un nouvel âge d’or de l’immunologie.

Du diagnostic du Covid long aux nouveaux traitements, ces découvertes amorcent une transformation de la médecine moderne.

legrandcontinent.eu/fr/2025/10/1...

Nobel de médecine 2025 : la révolution de l'immunologie

Le prix Nobel de médecine décerné cette semaine à Mary E. Brunkow, Fred Ramsdell et Shimon Sakaguchi s’inscrit au cœur d’un tournant épistémologique : à l’ère de l’IA et des dernières découvertes sur ...

legrandcontinent.eu

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Didier @medidier.bsky.social · 20h

Ce sont, de très très loin, les deux meilleurs articles en français que j'ai lu sur ma maladie EN 4 ANS!!!

Une BD et un média initialement sur la géopolitique... bravo à eux.

Ça va les mecs @lemonde.fr @lefigaro.fr @lesechosfr.bsky.social? @pasteur.fr? Pas trop la gêne?????

2/2

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Didier @medidier.bsky.social · 20h

Bon, après la superbe bd documentaire sur le covid long du mois dernier de la @lrd.bsky.social au tour maintenant du @grandcontinent.bsky.social avec un article excellent à la fois extrêmement actualisé niveau scientifique et informatif sur le même sujet et l'encéphalomyélite myalgique... 1/2

⤵️⤵️⤵️

Grand Continent @grandcontinent.bsky.social · 2d

Le prix Nobel de médecine décerné à Mary Brunkow, Fred Ramsdell et Shimon Sakaguchi, ouvre un nouvel âge d’or de l’immunologie.

Du diagnostic du Covid long aux nouveaux traitements, ces découvertes amorcent une transformation de la médecine moderne.

legrandcontinent.eu/fr/2025/10/1...

Nobel de médecine 2025 : la révolution de l'immunologie

Le prix Nobel de médecine décerné cette semaine à Mary E. Brunkow, Fred Ramsdell et Shimon Sakaguchi s’inscrit au cœur d’un tournant épistémologique : à l’ère de l’IA et des dernières découvertes sur ...

legrandcontinent.eu

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Didier @medidier.bsky.social · 1d

Trapped in a cell PLUS the cell is on fire.

That's how psychologically #ME operates for me.

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Didier @medidier.bsky.social · 1d

So yes, trapped in your thoughts, which in turn are not 'yours' anymore basically because they are impossible to control!

So to be precise, it's more like 'hell on top of hell', or a 'fire within a cage'. 2/2

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Didier @medidier.bsky.social · 1d

Strangely, there is another layer of hell to this. Bc the parts of the brainstem affected are related to your emotional/stress/psy/hormonal regulation, your thoughts/emotions/psy become 'chemically' extremely fucked up.

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Tom Kindlon @tomkindlon.bsky.social · 2d

An article on how being ill with ME, particularly severe ME, is psychologically challenging

meglobalchronicle.wordpress.com/2022/09/25/l...

#SevereME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @ludiekje.bsky.social

thought scramble
Gepubliceerd op 25 september 2022
This disease chases you day and night. It keeps you awake at night and when you eventually fall asleep it follows you into your dreams. There is no escape.

Being bedridden with severe ME/CFS also means that you have a lot of time. Although time is the most valuable currency in the world and I have much of it, it is useless.

Finding distractions is hard. Then you just lie there alone with your thoughts. It’s like being in a lockdown. Not in the house or in the room but in your body. Only you and your thoughts. Nothing else. They are always there. Not to think is not possible. If the body doesn’t function any more, you are left alone with your thoughts. You might have suppressed them in the past but that’s not possible anymore. You can’t go out to clear your mind or distract yourself with sports or partying. You must face them. With them comes fear. Fear about the future.

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Reposted by Didier

Adam @abrokenbattery.bsky.social · 3d

Thanks, George 🙏

For anyone interested, I wrote a thread about how Wessely was wrong about Gulf War Illness, Camelford Poisonings & ill health following 9/11 being psychogenic.

He also used harassment as a distraction from criticism during a talk on GWI.

threadreaderapp.com/thread/15273...

Thread by @ABrokenBattery on Thread Reader App

@ABrokenBattery: 🧵Gulf War Syndrome & Simon Wessely "For 30 years they have been disowned, ignored and lied to by consecutive governments, with no positive answers to their questions about exposure to...

threadreaderapp.com

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Didier @medidier.bsky.social · 3d

How on earth is almost 2026 and this shit is about hospitalised patients from 2020/2021...

Do we have to wait 5 more years for looking at #pwME/LC with PEM (both pre & post covid)? And people with other sequalae?

Finding answers in science takes time, blablabla... this is just about 'doing it'!

Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · 3d

Brainstem damage found to be behind long-lasting effects of severe Covid-19.

"Using ultra-high-resolution scanners that can see the living brain in fine detail, researchers from the Universities of Cambridge and Oxford were able to observe the damaging effects Covid-19 can have on the brain."

Brainstem damage found to be behind long-lasting effects of severe Covid-19

Damage to the brainstem - the brain's 'control center' - is behind long-lasting physical and psychiatric effects of severe Covid-19 infection, a study suggests.

www.news-medical.net

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Didier @medidier.bsky.social · 4d

💯 this ⤵️

Elke Hausmann @drelke.bsky.social · 4d

In Germany, it is common now to call the severest form of LC ME/CFS. In the UK, we tend to talk about either LC or ME.

It would be very interesting to look at a cohort of LC patients - would this test be able to pick out those with PEM??

#LongCovid

www.theguardian.com/society/2025...

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome

Research could offer hope for ME patients – but some experts urge caution and say more studies needed

www.theguardian.com

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Didier @medidier.bsky.social · 4d

Have to confess, I often think that would be the fairest.

Which, knowing what I know about my own #ME, I reckon is the most devillish horrendous wish I've ever had in my entire life.

Kate Violette @kateviolette.com · 4d

Whether in this lifetime or the next, I hope anyone who's ever doubted how badly people with ME/CFS want to get better gets to experience it for themselves.

I can't be all turn the other cheek about it. I hope they suffer firsthand and in their pain they'll find out just how wrong they were.

George Monbiot @georgemonbiot.bsky.social · 4d

In the firing line, as ever, are the UK’s hundreds of thousands of ME/CFS patients. As a practitioner once remarked, “the bastards don’t want to get better”. If there is one characteristic all the ME/CFS patients I’ve come across have in common, it is a desperation to get better.

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Reposted by Didier

Tom Kindlon @tomkindlon.bsky.social · 4d

From France:

"Myological evaluation of patients with post-acute COVID-19 syndrome".
All 22 had ME/CFS

www.sciencedirect.com/science/arti...

Screenshot from latest Science for ME weekly update

#MEcfs #LongCovid

Neuromuscular Disorders
Volume 53, Supplement, September 2025, 105492
Neuromuscular Disorders
29PMyological evaluation of patients with post-acute COVID-19 syndrome
Author links open overlay panel
F. Authier 1 2
,
M. Aoun Sebaiti 1
,
S. Souvannanorath 1 2
,
E. Malfatti 1 2
,
E. Itti 1 2
,
G. Severa 1 2
1
Paris Est Creteil University, Créteil, France
2
Henri Mondor University Hospital, Créteil, France
Available online 3 October 2025, Version of Record 3 October 2025.

What do these dates mean?

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https://doi.org/10.1016/j.nmd.2025.105492
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Post-acute COVID-19 syndrome (PACS) is a highly multifaceted condition, mimicking myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in patients with the most prolonged evolution. Due to the frequency of muscle pain and exertion intolerance, these patients are often suspected of having a muscular disease. Here we present the results of the neuromuscular evaluation of patients with a clinically defined PACS. Twenty-two consecutive PACS patients (17F, 5M; median age 47 yrs) were included. All had at least one Covid-infection, confirmed by PCR, with mild respiratory symptoms, only one having required hospitalization and transfer to intensive care unit at acute stage. After a variable period between weeks to few months, patients developed chronic fatigue (duration > 6 months; n=22, 100%), post-exertional malaise (n=22, 100%), cognitive impairment including short-term memory loss or “brain fog” (n=22, 100%), muscle pain (n=18, 82%). No other specific neuromuscular clinical sign were found. 100% of patients fulfilled diagnostic criteria for ME/CSF: CDC1994/Fukuda, International Consensus Criteria 2011, US Inst Medicine 2015, UK National Institute for health and Care Excellence, 2021. Nineteen (86%) didn’t show any recovery period after the onset of symptoms. ENMG examination was normal, without myogenic pattern; CK levels were normal; and muscle MRI available in f…

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Reposted by Didier

Ruth Ann Crystal @drruth.bsky.social · 4d

In a proof-of-concept study, EpiSwitch®CFS blood test (3D DNA folding patterns) identified severe ME/CFS (vs healthy controls) with 96% accuracy. buff.ly/EyzOq11

Immune and inflammation pathways (e.g. IL-2, TNF) are key.

Larger studies on other inflammatory diseases are needed.

#medsky #MECFS 😷

Man with black hair is sleeping in bed with a blue pillow and comforter. Next to him is a hand with a blue glove holding up a blood sample. EpiSwitch CFS test.

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Didier @medidier.bsky.social · 4d

Indeed. In my head, with everything that is coming up, #MS and #ME share same model. Different 'nervous component/cell' affected, different key aab, some different specificities logically, but exactly same 'engrenage'.

Lomelindi12 @lomelindi12.bsky.social · 4d

I have #MS - central nervous system damage which may be triggered by an immune response to the EBV virus in those with a genetic predisposition (or other predisposers)

I’ve always believed ME/CFS is a serious condition also caused by a viral inflammatory response in the brain/spinal cord.

George Monbiot @georgemonbiot.bsky.social · 4d

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

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Reposted by Didier

Chris Ponting @cgatist.bsky.social · 4d

The research used to claim reliability of a ME/CFS blood test has important limitations, shown here.

www.theguardian.com/society/2025...

Three possible confounders in a study proposing an ME/CFS blood test : sex/age, batch and inactivity/severity. Better designed studies by independent researchers are necessary.

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Didier @medidier.bsky.social · 4d

Man, imagine if every country, every major newspaper in the world, had a @georgemonbiot.bsky.social...

George, you are a true gem for all #pwME around the world. Let's hope more journalists join you, you are an inspiration. Thank you, thank you, thank you!

#GreatestMEdicalScandal
#pwME

George Monbiot @georgemonbiot.bsky.social · 4d

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome

Research could offer hope for ME patients – but some experts urge caution and say more studies needed

www.theguardian.com

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Reposted by Didier

George Monbiot @georgemonbiot.bsky.social · 4d

On the one hand, medical science is beginning to get a handle on the very complex physiological basis of this disease. On the other hand, we can expect the greatest medical scandal (so far) of the 21st Century – the mass mistreatment and neglect of ME/CFS sufferers – to continue.

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Reposted by Didier

George Monbiot @georgemonbiot.bsky.social · 4d

To rub salt into their wounds, these patients have watched as the man many see as their tormentor-in-chief has been garlanded with honours, including a knighthood. His latest appointment is yet another blow.

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Reposted by Didier

George Monbiot @georgemonbiot.bsky.social · 4d

ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long.
There's a huge BUT coming ...🧵
www.theguardian.com/society/2025...

Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome

Research could offer hope for ME patients – but some experts urge caution and say more studies needed

www.theguardian.com

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Didier @medidier.bsky.social · 4d

If only...

I wished he was indeed the most hated doctor. He would be largely discredited, his professional abuses shamed and legally sanctioned.

Instead, he is being awarded honours, his ideas are still echoed with impunity and he is invited to participate in medical decision-making.

👎

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Reposted by Didier

ThereForME @thereforme.bsky.social · 5d

From Lib Dem conference to Washington DC - today's #ThereForME campaign update shares an update from advocacy in the UK and overseas.

Read on to find out more 👇

(Link in next post)

Campaign update 26. This week: What's happening in Westminster? Long Covid advocacy overseas. New #ThereForME Substack post.

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Didier @medidier.bsky.social · 5d

for months it was the simple sound of the elevator through the wall... 🙄 I mean, everything is so surreal, so far-fetched, so uncompatible with even 1% of what we consider 'normal'...

Anyway, best of luck from me and my exploded head indeed... 🥲🤯

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Didier @medidier.bsky.social · 5d

Same. Used to party hard, lights, music...

Hypersensitivity is hell. I've ended up triggered for whole 4 days bc a reflection from the sun entering unexpectedly the room from someone opening a windown from building across... or from 1 single unexpected flash in a screen...

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