The international ME Awareness Day, 12th May 2024

Kalliope

Kalliope

Senior Member (Voting Rights)
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 .

https://twitter.com/user/status/1789581278326436085
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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:
Today is International ME/CFS Day ME/CFS has been around for a very long time. However, it only came into the public consciousness as a result of Long Covid, i.e. the COVID pandemic. Far too little research has been done. We still don't understand the disease well enough. There are also not enough drugs, not enough studies. In many cases, there is no cure, so a lot still needs to happen. ME/CFS is also often not recognized in practice and there are many doctors who don't know enough about it. That has to change. We at the Federal Ministry of Health are working intensively on this. We have a Long Covid round table, which is also about ME/CFS - any ME/CFS, not just Covid-related. We meet there with scientists from all over Germany, those affected, those who are relatives. We also deal with ME/CFS in children. Children should not be forgotten here. Together with the Federal Joint Committee, we have a total of €100 million at our disposal, which we can use to conduct research into care for ME/CFS and another €50 million for the care of long Covid in children.

But this also covers ME/CFS. This disease needs to be researched much more intensively. It needs to be in the public eye. The people who have it suffer greatly and they must not be discriminated against. It must not be dismissed as a mental illness alone, but the organic background, even if we do not yet fully understand it, must be taken seriously. So perhaps you will go to our website here, to our Long Covid website. There is also a lot of information on ME/CFS there. Contact our ministry. I believe that ME/CFS is a disease that we can combat by publicizing it, by doing more research, by creating better conditions. We have to stick together!
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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
 
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tmrw said:
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
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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

https://twitter.com/user/status/1789543530815173076
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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.

https://twitter.com/user/status/1789575941733187806
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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

https://twitter.com/user/status/1789815768609095926
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The responses aren't very pleased with him and wish he did much more for the cause
 
NelliePledge said:
The medical profession in general though but not the entire medical profession
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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.
 
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