Discover and read the best of Twitter Threads about #LearnFromME

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2023 #MEAwarenessDay

A 🧵 of people with #MyalgicEncephalomyelitis for DECADES

Lives on pause
QoL drastically changed
Whether mild/moderate/severe/very severe ME
We have all been affected

No treatment
No cure
Is this FAIR?

#RingFenced funding needed for #BiomedicalResearch ImageImage
Read 8 tweets
📢 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. Quote from Sonya Chowdhury:...
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.
Read 4 tweets
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. Quote by Carole: "Havi...
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.
Read 5 tweets
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). black and white photo of ma...
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
Read 4 tweets
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. Imageje ne peux plus rien prévoi...
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. With #CovidLong & #MyalgicE...Image
Read 4 tweets
#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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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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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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Read 7 tweets
#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
1/ Encéphalomyélite myalgique ...
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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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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Read 4 tweets

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