Thought we could have a thread for this day, to share news and stories and campaigns Will start off with a Tweet from the German Federal Ministry of Health who shares a message from Karl Lauterbach. Not quite sure what he says, but the tweet goes (auto translated): For #MECFS Awareness Day, a message from the Federal Minister of Health, Professor @Karl_Lauterbach . Information and offers of help on #LongCovid and/or ME/CFS can be found at https://bmg-longcovid.de .
I made an auto transcript of the YouTube Version of this video (I checked the first sentences only, they seem to be correct) and did a machine translation into English. Prof. Dr. Lauterbach: I don't want to derail this thread, so moderators please (re)move this question if you want: Where are all the (big) protests and other activities all over the world? From what I see a lot is happening in Germany. Activism gained a lot of traction here. It seems to me that there isn't happening a lot in other countries. The UK has some well funded organizations but I don't see a lot of activism happening there. I mostly quit social media, so I might just miss it. edit: grammar
Thank you so much for translating Lauterbach's message, @tmrw It's great to see a Minister of Health recognising this day and kudos to Germany who is doing a lot this year!
BBC Chronic fatigue syndrome: Protestors call for specialist ME services Tells the stories of Rosie Pidgeon, Joan McParland and Rebecca Logan. quote: A former champion Irish dancer who has myalgic encephalomyelitis (ME) has joined other protesters calling for better support for those with the condition. Rosie Pidgeon developed the neurological disease after contracting Covid in 2021. The 19-year-old now uses a wheelchair to manage fatigue and pain. She joined a crowd of others with ME to urge Stormont to introduce specialist services in Northern Ireland. The protest on Sunday was held to coincide with World ME Day.
Another high profile German politician, Vizepräsidentin des Deutschen Bundestages Katrin Göring-Eckardt (the "speaker" of the German Parliament) tweets (autro translated): Hundreds of thousands of people in Germany are affected by #MECFS . Much has already been done in the fight against ME/CFS. But there is still a lot to do. In addition to more research and better treatment, more doctors must finally know about the disease. #MECFSAwarenessDay
To mark the day, I have posted on fb a photo of Mr B protesting outside the BBC in 2018. Cue for a helping of gloom. It seems so long ago. I wonder where we will be in another 6 years. But thank you Mr B and others who advocate for us. We will always remember.
The Austrian Minister of Health also had a video greeting yesterday on Twitter. Auto translation of Tweet: People suffering from #MECFS need our help: better medical care, more knowledge among doctors, more research. That is exactly what we are working on: by the summer we will create an action plan and a national reference center. We are investing one million euros in this.
NINDS Director Walter J. Koroshetz on Twitter yesterday: Today is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) International Awareness Day #MECFS is a serious, chronic disease that affects millions of people worldwide and even more now after COVID. #NIH is committed to advancing research to better understand ME/CFS and identify potential treatments for this disease. https://nih.gov/mecfs The responses aren't very pleased with him and wish he did much more for the cause
The Norwegian patient advocate Sissel Sunde has collected videos from May 12th in a blog post. Several of the videos are in English. https://lifewithmebysissel.wordpress.com/2024/05/14/videoer-til-me-dagen-2024/
Well, patients, and a few other people, have. The medical profession? Literally the problem, the blocker in the way.
Hard to find the right words for it, but by "the medical profession" I mean the institutions of medicine, as separate from what individuals can choose to do, usually here involving bucking what the institutions of the profession do, what they teach and acknowledge as true. As we know, MDs who are on our side often face significant career consequences, even disciplinary actions. For sure there are... hundreds of individual MDs who are doing meaningful things and who do know better. The medical profession, health care, is a giant multi-trillion industry with tens of millions of professionals. That's a lot of zeroes after the decimal. For sure, when the similar idea of "not all men" is applied to "not all doctors", it's way, way off in terms of what % buck the cultural trends.
I chose to boycott the Millions Missing event that was arranged in Stockholm, Sweden. Part of my boycott was to not post any info about it here on the forum, in order to not give it any unnecessary attention. I do not support events by organizers that keep inviting speakers who disseminate misinformation*, promote pseudoscience (including commercial brain retraining programs) and anti-democratic values, or aggressively smears, threatens and tries to silence pwME who don't agree. I'm aware that MillionsMissing is a so called tool and people are allowed to use the tool as they please, even if it is to do things that harm and damage our cause and the patient community as a whole -- including things like having a negative impact on our access to safe high-quality health care, and the quality of ME research that is currently being done in Sweden. Even supporting and enabling psychosomatic/"BPS" research. I really wish things were different, though. I would like to see MEAction accept accountability and set clear boundaries/rules to prevent harm. *) or I guess it's actually disinformation: ungrounded opinions and speculations falsely presented as facts.
"M.E. Poppins" by Alice Ella - genius. https://www.instagram.com/reel/C60rov8Mq8a/ Usual uninformed nonsense in the comments, but Alice Ella achieved this sublime piece, working around PEM.
