Severe ME Understanding & Remembrance Day, 8th of August 2024

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Severe ME Awareness Day 2024
For Severe ME Awareness Day, we're providing all healthcare professionals with free educational content via our 'Question of the Day' Campaign to challenge and improve clinical knowledge, understanding and patient management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Complete all 5 multiple-choice assessment questions below to receive a 0.5 Hour CPD Certificate.

Thread:
https://www.s4me.info/threads/severe-me-awareness-day-2024-cpd-course.39687/
 
Protest in Berlin:

People who are affected by ME/CFS during a lie-in demonstration

No touch, no light, no sounds - those afflicted with ME/CFS find their daily life severely restricted. This is the focus of a protest by those affected. ​

- People who are affected by ME/CFS during a lie-in demonstration
Dozens of people demonstrated at the Alexanderplatz and in front of the Rotes Rathaus, lying down and using wheelchairs, to raise awareness for ME/CFS sufferers. Around 70 participants were present, according to the police. The protest, organized by the #LiegendDemo initiative, was themed "Wheelchair demo for the inclusion and visibility of people with ME/CFS".​

ME/CFS stands for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. According to the German Society for ME/CFS, it's a severe neuroimmunological disease that often leads to significant physical disability. Demonstrators complain that help for affected individuals often comes too late, with the wheelchair symbolizing this delay. Timely and adequate help could make the condition milder, they say.​

Article continues in English



 
Severe ME Day 2024

Today, 8 August is international Severe ME Day. Severe ME Day is recognised globally as a day to acknowledge the strength and spirit of the estimated 25% of individuals living with ME/CFS who have severe or very severe symptoms.

Living, or caring for someone , with severe ME/CFS comes with its challenges that those with less severe ME/CFS do not face. Sharing their experience living with severe ME/CFS, Emerge Australia has launched two videos about what it’s like living with severe ME/CFS, as well as ways these people have found to add meaning and enjoyment to their lives, from their beds.



Emerge Australia has put together a web page with information and resources about severe ME/CFS.

CLICK HERE FOR SEVERE ME DAY RESOURCES AND VIDEOS
https://www.emerge.org.au/severe-me-day-2024/

https://twitter.com/user/status/1821630289753292865
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From Valerie Eliot Smith on X
https://twitter.com/user/status/1821468565922345320


#SevereMEday
1/3 Until we in the ME community achieve a complete culture shift, the recognition/healthcare/research/education we so urgently need will not happen. Cautious incremental change is not enough. Millions hv died & more will die. Decades of failure & abuse must end...


2/3 The current piecemeal/reactive approach to advocacy is demonstrably inadequate & needs a reset.
First & foremost, we need a clear, professionally-facilitated overarching strategy + a long-term plan.
For more on how this cd be achieved see my blog eg.


3/3 #SevereMEday
Above all let us not forget that:
“The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019
Remembering #MaeveInquest & all other #ME patients who have died in appalling circumstances.
 
ME Research UK:
Today, 8th August, marks 'Severe ME - Understanding and Remembrance Day' , which aims to make healthcare professionals and the public aware of just how severe ME can be. August 8th was the birthday of Sophia Mirza, a severe ME sufferer, who died in 2005.

As reported by The Irish News (https://bit.ly/4ccGGrz) at the inquest of Maeve Boothby-O'Neill, her GP, Dr Lucy Shenton stated -
"There needs to be somewhere within the NHS providing specialist care for patients with severe ME and an easy mechanism to access that provision."

Read more about Severe ME Day - https://bit.ly/severemeday2024

#SevereMEDay #SevereME #MECFS #myalgicencephalomyelitis
https://twitter.com/user/status/1821471415914082557
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