Andy
Senior Member (Voting rights)
Thread on the 2022 roundtable here, Webinar: European ME Alliance: ME/CFS in Europe - EMEA Roundtable II, 8th April 2022, 14:00 CET
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New Forum Software Installed (Still a few issues but reopening the forum) More details.
Europe: European ME Alliance (EMEA) (also EMECC and EMERG)
- Thread starter Andy
- Start date
Andy
Senior Member (Voting rights)
ME/CFS and post Covid in the Balkans
"The next roundtable webinar on Myalgic Encephalomyelitis (ME/CFS) in Europe will be held on Friday 27 May 14:00 CET.
This webinar will try to begin the process of raising awareness of ME in Slovenia, Croatia and Serbia, and the Balkan countries in general, in order to improve research and services for people with ME, and thereby overcome the inherent stigma and misinformation about the disease that still exists."
https://www.europeanmealliance.org/news-Q22022-001.shtml
"The next roundtable webinar on Myalgic Encephalomyelitis (ME/CFS) in Europe will be held on Friday 27 May 14:00 CET.
This webinar will try to begin the process of raising awareness of ME in Slovenia, Croatia and Serbia, and the Balkan countries in general, in order to improve research and services for people with ME, and thereby overcome the inherent stigma and misinformation about the disease that still exists."
https://www.europeanmealliance.org/news-Q22022-001.shtml
Andy
Senior Member (Voting rights)
ME/CFS IN THE NORDIC COUNTRIES
"Status of Health Care and Research and Suggestions for Joint Actions and Policies
In November 2021 the Medical Association of ME/CFS in Finland (SLME) organised an online conference with the purpose to assess the existing Nordic ME/CFS health care and research resources and discuss how best to put them into good use. A report was produced from this conference."
https://www.europeanmealliance.org/emea-nordic-web.shtml
"Status of Health Care and Research and Suggestions for Joint Actions and Policies
In November 2021 the Medical Association of ME/CFS in Finland (SLME) organised an online conference with the purpose to assess the existing Nordic ME/CFS health care and research resources and discuss how best to put them into good use. A report was produced from this conference."
https://www.europeanmealliance.org/emea-nordic-web.shtml
Wyva
Senior Member (Voting Rights)
I haven't watched it yet, but this is a video from the 9th Congress of the European Academy of Neurology
One of the people participating in the discussion was Gracemarie Bricalli, representing the EMEA, talking about ME/CFS of course.
Edit: she starts talking at around 13:30
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Wonderful presentation and question answering by Gracemarie Bricalli - approx 10 minutes all up.
I hope that we have Gracemarie as a member here.
There's an interesting discussion about pain that follows, there's a mention of fibromyalgia and gender issues. Also a discussion of the importance of patient involvement in research.
I hope that we have Gracemarie as a member here.There's an interesting discussion about pain that follows, there's a mention of fibromyalgia and gender issues. Also a discussion of the importance of patient involvement in research.
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ME/CFS Science Blog
Senior Member (Voting Rights)
Agree, she is really fluent and professional, job well done.
The other presenters were also good.The first one talked about restless leg syndrome, the last one about chronic pain.
Dolphin
Senior Member (Voting Rights)
New press release:
A Shocking Indictment of European Research and Healthcare Policies for Myalgic Encephalomyelitis
The European ME Alliance today releases the findings of a comprehensive survey shedding light on patients across Europe
https://europeanmealliance.org/emea-pan-european-survey-pr-uk.shtml
A Shocking Indictment of European Research and Healthcare Policies for Myalgic Encephalomyelitis
The European ME Alliance today releases the findings of a comprehensive survey shedding light on patients across Europe
https://europeanmealliance.org/emea-pan-european-survey-pr-uk.shtml
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The thread on the EMEA 2021 survey - now published - is here:
https://www.s4me.info/threads/2021-pan-europe-me-patient-survey-emea.22819/
Some posts have been moved there.
https://www.s4me.info/threads/2021-pan-europe-me-patient-survey-emea.22819/
Some posts have been moved there.
Andy
Senior Member (Voting rights)
Podcast: Invisible Battles: The Unseen Realities of Neurological Conditions
"Welcome to another episode of Brain Health Matters, brought to you by the European Federation of Neurological Associations. In this episode, we’re shining a light on something often overlooked but deeply impactful—the invisible symptoms and burdens faced by people living with neurological conditions.
While tremors, seizures, or mobility challenges might be more visible, many of the most debilitating aspects of these conditions remain hidden from view. Fatigue, cognitive fog, chronic pain, anxiety— these are just a few of the silent struggles that can profoundly affect quality of life, yet are frequently misunderstood or dismissed.
In this episode, we’ll hear from Dr. Oliver Bernath, a neurologist and sleep disorder specialist based in the UK, Tania Pilz, a young woman from Austria living with Multiple Sclerosis, and GraceMarie Bricalli, President of the European ME Alliance, who will share insights into the frequently-overlooked burden of Myalgic Encephalomyelitis (ME) and the urgent need for recognition and support.
Together, they'll help us uncover the emotional, psychological, and social toll of these invisible symptoms. We’ll explore why they’re so often under-recognized, how they impact daily life, and what can be done to ensure they’re taken seriously in both clinical care and public awareness.
Because when it comes to brain health, what we can’t see can hurt just as much as what we can."
www.buzzsprout.com
"Welcome to another episode of Brain Health Matters, brought to you by the European Federation of Neurological Associations. In this episode, we’re shining a light on something often overlooked but deeply impactful—the invisible symptoms and burdens faced by people living with neurological conditions.
While tremors, seizures, or mobility challenges might be more visible, many of the most debilitating aspects of these conditions remain hidden from view. Fatigue, cognitive fog, chronic pain, anxiety— these are just a few of the silent struggles that can profoundly affect quality of life, yet are frequently misunderstood or dismissed.
In this episode, we’ll hear from Dr. Oliver Bernath, a neurologist and sleep disorder specialist based in the UK, Tania Pilz, a young woman from Austria living with Multiple Sclerosis, and GraceMarie Bricalli, President of the European ME Alliance, who will share insights into the frequently-overlooked burden of Myalgic Encephalomyelitis (ME) and the urgent need for recognition and support.
Together, they'll help us uncover the emotional, psychological, and social toll of these invisible symptoms. We’ll explore why they’re so often under-recognized, how they impact daily life, and what can be done to ensure they’re taken seriously in both clinical care and public awareness.
Because when it comes to brain health, what we can’t see can hurt just as much as what we can."
Invisible Battles: The Unseen Realities of Neurological Conditions - Brain Health Matters
Welcome to another episode of Brain Health Matters, brought to you by the European Federation of Neurological Associations. In this episode, we’re shining a light on something often overlooked but deeply impactful—the invisible symptoms and burden...