Discover and read the best of Twitter Threads about #pwSevereME
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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.
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.
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.
