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Action for M.E. Profile picture
@actionforme
May 10 • 4 tweets • 3 min read Twitter logo Read on Twitter
For this #WorldMEDay, we want to highlight the devastating impact of post-exertional malaise (PEM) on people with severe and very #SevereME. graphic of person resting i...
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 have a range of support services & resources available to #pwSevereME to help them access the right care. Visit our website for more info: ow.ly/QJri50OjtlZ

To get involved on #WorldMEDay & share your experience of PEM, visit: ow.ly/nLoP50Ok6qX

#MECFS

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More from @actionforme

Action for M.E. Profile picture
May 12
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. World ME Day. Sensory overl...
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.
Read 5 tweets
Action for M.E. Profile picture
May 12
📢 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
Action for M.E. Profile picture
May 11
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
Action for M.E. Profile picture
May 10
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

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