Discover and read the best of Twitter Threads about #WorldMEDay
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ME/CFS is a terrible illness that removes people from their own lives.
For #WorldMEDay, please consider watching this short video on it. More and more people you know will be getting ME/CFS from COVID, and it means so much to be understood.
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For #WorldMEDay, please consider watching this short video on it. More and more people you know will be getting ME/CFS from COVID, and it means so much to be understood.
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Here are three tweets from my own journey learning about ME/CFS - the first in August 2020, before I was even diagnosed myself:
The second:
You'd never guess - from the name - what Chronic Fatigue Syndrome 𝘳𝘦𝘢𝘭𝘭𝘺 is.
A lot of doctors don't know either.
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A lot of doctors don't know either.
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According to current research, #MyalgicEncephalomyelitis (ME/CFS), otherwise known as "Chronic Fatigue Syndrome," is a neuro-immune condition with fluctuating physical and cognitive symptoms. 
Some people get ME/CFS after a virus, but in others it develops gradually without a known trigger.
The symptoms can range from mild to severe, it’s often highly disabling, and it is not rare. The exact causal mechanisms haven't been nailed down yet, but research is getting closer
The symptoms can range from mild to severe, it’s often highly disabling, and it is not rare. The exact causal mechanisms haven't been nailed down yet, but research is getting closer
It’s #WorldMEDay! Myalgic Encephalopathy was defined as a prolonged illness after an infection. It’s defining feature is an inability to exercise or otherwise do a lot w/o major crashes lasting days or weeks. It’s also known as “chronic fatigue syndrome” but that name sucks! 1/
“Fatigue” is something we all suffer but “fatigue” from ME is different: it involves lack of blood flow to the brain- what happens to dying people. It isn’t relieved by sleep.
The illness is finally getting attention with hundreds of millions newly suffering post-Covid. 2/
The illness is finally getting attention with hundreds of millions newly suffering post-Covid. 2/
There are different theories for what causes it, from persistent infection to reactivated Epstein Barr to a new autoimmune illness. Or all three! 3/
Post-exertional malaise (PEM) is something that everyone with M.E. experiences.
PEM can have a profound impact on the daily lives of individuals with severe and very #SevereME.
PEM can have a profound impact on the daily lives of individuals with severe and very #SevereME.
For people with #SevereME, sensory overload, such as bright lights, loud noises, and strong smells can severely exacerbate #MECFSsymptoms, including triggering PEM, which can last for days, weeks or even permanently.
#pwSevereME need to take critical measures to prevent sensory overload from causing PEM. For example, they may need to limit exposure to triggering stimuli, use earplugs or noise-cancelling headphones, wear sunglasses, and reduce exposure to screens and technology.
📢 Today is #WorldMEDay, a day dedicated to learning about, raising awareness of, and campaigning around #MECFS.
This year, the @WorldMEAlliance campaign aims to ensure the harmful effect of pushing harder is the first thing that comes to mind when someone hears about M.E.
This year, the @WorldMEAlliance campaign aims to ensure the harmful effect of pushing harder is the first thing that comes to mind when someone hears about M.E.
For #pwME, PEM can be a devastating consequence of trying to engage with the world, significantly limiting their ability to participate in daily life. The impact can be so severe for some that it can result in a loss of independence, requiring them to receive full-time care.
It's now estimated that 17-30M people worldwide live with M.E., but it's believed to have doubled since the #COVID19 pandemic began. Shockingly, there are now 65M people living with #LongCOVID, with 50% meeting the diagnostic criteria for M.E. & a growing number experiencing PEM.
When it comes to M.E., it’s crucial to understand that pushing harder can make you sicker. This is a fundamental aspect of the condition that is often misunderstood by those who are unfamiliar with it.
For #pwSevereME, PEM can be particularly devastating.
For #pwSevereME, PEM can be particularly devastating.
Individuals with #SevereME are usually housebound or bedbound and some require round-the-clock care. Activities of daily living like using the toilet, eating, or brushing your teeth can exacerbate the already extreme & debilitating symptoms that these people live with every day.
Carole, who has had #SevereME for 30 years, shared her experience with PEM.
For #WorldMEDay, we want to raise awareness and advocate for greater representation for #pwSevereME and very severe M.E.
For #WorldMEDay, we want to raise awareness and advocate for greater representation for #pwSevereME and very severe M.E.
Excited to join in! #MECFSConf
If you’re a researcher & interested in making a difference in the field of #MECFS, then this opportunity could be for you.
In 2022, the @PSPforMECFS, led by #pwME, their carers & clinicians, identified the top 10+ research priorities, including post-exertional malaise (PEM).
In 2022, the @PSPforMECFS, led by #pwME, their carers & clinicians, identified the top 10+ research priorities, including post-exertional malaise (PEM).
The @The_MRC which co-funded the ME/CFS Priority Setting Partnership, is looking to encourage high-quality funding applications to any of their research board grant or fellowship opportunities.
Building a portfolio of #MECFS research has been a priority for the MRC for several years.
They'd particularly welcome proposals that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership.
Read about these here: ow.ly/zylC50Ojf3Y
They'd particularly welcome proposals that address 1 or more of the research areas identified by the ME/CFS Priority Setting Partnership.
Read about these here: ow.ly/zylC50Ojf3Y
For this #WorldMEDay, we want to highlight the devastating impact of post-exertional malaise (PEM) on people with severe and very #SevereME.
Simple everyday activities that most of us take for granted, such as taking a shower, brushing our teeth, or simply eating, can leave #pwSevereME bedridden, unable to move or speak, and in intense pain and discomfort.
Unable to work or leave home, #pwSevereME become isolated & dependent on others for their care.
We must continue to raise awareness about the experiences of those living with #SevereME & the devastating impact of PEM. It’s our mission to secure the care & support that they need.
We must continue to raise awareness about the experiences of those living with #SevereME & the devastating impact of PEM. It’s our mission to secure the care & support that they need.
Avec le #CovidLong & l'#EncephalomyeliteMyalgique j'ai appris que je ne peux plus rien prévoir à l'avance.
Cette maladie est imprévisible, sournoise, fluctuante, et réduit considérablement les liens sociaux.
Cette maladie est imprévisible, sournoise, fluctuante, et réduit considérablement les liens sociaux.
With #longcovid & #MyalgicEncephalomyelitis I've learned that I can't plan anything in advance.
This disease is unpredictable, sneaky, fluctuating, and greatly reduces social connections.
This disease is unpredictable, sneaky, fluctuating, and greatly reduces social connections.
#EM : quand faire 1 peu trop [pour nous] peut [nous] aggraver beaucoup 🪫
C'est ce que vivent chaque jour des malades trop souvent invisibles, touchés par l'#Encéphalomyélitemyalgique, maladie multi-systémique qui peut prendre plusieurs formes et avoir des sévérités variées,
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C'est ce que vivent chaque jour des malades trop souvent invisibles, touchés par l'#Encéphalomyélitemyalgique, maladie multi-systémique qui peut prendre plusieurs formes et avoir des sévérités variées,
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les malades les plus touchés restant cloîtrés dans la pénombre de leur chambre et dépendants d'aidants.
Le symptôme cardinal de l'EM, nécessaire pour que soit posé le diagnostic (en attendant l'arrivée de tests basés sur des bio-marqueurs auxquels travaillent, entre autres,
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Le symptôme cardinal de l'EM, nécessaire pour que soit posé le diagnostic (en attendant l'arrivée de tests basés sur des bio-marqueurs auxquels travaillent, entre autres,
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les rares équipes de recherche mobilisées sur le sujet) est le #MPE, pour #MalaisePostEffort.
🔹 Comme son nom ne l'indique pas trop, c'est une réponse disproportionnée et anormale du corps suite à un effort physique, cognitif ou émotionnel. La notion même d'effort ne permet
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🔹 Comme son nom ne l'indique pas trop, c'est une réponse disproportionnée et anormale du corps suite à un effort physique, cognitif ou émotionnel. La notion même d'effort ne permet
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#EM : quand faire 1 peu trop [pour nous] peut [nous] aggraver beaucoup 🪫
C'est ce que vivent chaque jour des malades trop souvent invisibles, touchés par l'#EM - encéphalomyélite myalgique, maladie multi-systémique qui peut prendre plusieurs formes et avoir des sévérités
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C'est ce que vivent chaque jour des malades trop souvent invisibles, touchés par l'#EM - encéphalomyélite myalgique, maladie multi-systémique qui peut prendre plusieurs formes et avoir des sévérités
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variées, les malades les plus sévères restant cloîtrés dans la pénombre de leur chambre et dépendants d'aidants.
2 témoignages précieux ont été partagé ces derniers jours sur Twitter, en anglais :
1️⃣ d'un aidant @cam_ccl : threadreaderapp.com/thread/1651296…
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2 témoignages précieux ont été partagé ces derniers jours sur Twitter, en anglais :
1️⃣ d'un aidant @cam_ccl : threadreaderapp.com/thread/1651296…
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2️⃣ d'un médecin @PutrinoLab : threadreaderapp.com/thread/1654956…
Du 9 au 12 mai, nous allons communiquer sur cette maladie, loin d'être rare a fortiori depuis qu'une partie des #covidlong viennent grossir les rangs des #paEM.
1000 mercis d'ailleurs à l'équipe @MillionsMissgFr pour la
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Du 9 au 12 mai, nous allons communiquer sur cette maladie, loin d'être rare a fortiori depuis qu'une partie des #covidlong viennent grossir les rangs des #paEM.
1000 mercis d'ailleurs à l'équipe @MillionsMissgFr pour la
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