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Action for M.E. Profile picture
Action for M.E.
@actionforme
Providing support & holistic healthcare services to people of all ages affected by #MECFS
Sep 16, 2024 • 5 tweets • 2 min read
1/5
We've updated our 'Manifesto for ME' - now 'Act For ME'

We've sent the updated doc to all MPs, asking them to #ActForME & pledge support for our 3 key calls (see thread below)

We've also created a template letter for you to send to your local MP, asking for their support An announcement from the organisation "Action for ME" The background features the iconic Big Ben clock tower and the Palace of Westminster in London, with a blue sky. The text reads, "Join us in calling on the Government to ‘Act for ME,’" encouraging action from the government for ME (Myalgic Encephalomyelitis). The announcement includes two buttons labelled "Our news" and "Policy" and features a QR code for further engagement. The overall theme is advocacy for ME/CFS awareness and policy change. 2/5
Call #1

📄 Launch and full implementation of the Government’s Delivery Plan - following multiple delays, we are calling for its immediate release & for its recommendations to be enacted in full
May 12, 2023 • 5 tweets • 3 min read
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.
May 12, 2023 • 4 tweets • 4 min read
📢 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.
May 11, 2023 • 5 tweets • 4 min read
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.
May 10, 2023 • 4 tweets • 4 min read
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.
May 10, 2023 • 4 tweets • 3 min read
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.