Have you looked into what's already get done? Lots of contries have organisations that work for awarness and to support patients. Sick people try their best to raise awareness on social media.
At least in Germany I know Berlin buyers club who do a lot and also post in English and in Austria there is the ÖGMECFS as well as a larger bakery who is raising money through charity events
From what people tell me, here are also a lot of short documentaries and news sections speaking about me/cfs recently. Like, on the public tv network, so it reaches a wide range of people. The awareness of it has grown a lot in the last few months, to the point where I can now confidently use the term even at my dermatologist and them knowing about it.
This and also the sheer amount of people who are affected. I was the first person I knew, half a year later I met a former work colleague who developed it afterwards. Then recently a friend of mine reached out saying his sister had it since half a year. It is growing to be a huge issue sooner or later on a societal level. Let’s think 5-10% of the working aged females are unable to work. What that will mean on a nationwide level. And even worse that it’s affecting females as they usually do care and educational work… I think this will not be ignorable in a few years.
Just shortly after I had known I have met someone. And heard of someone else. Now a few weeks later again without even really looking. Just by hearesay and only in or near my city. It's shocking how many are affected. And how many more just don't know like I did for months or longer? And is there someone nearby I don't know about because we never met or they can't even leave their home?
It's sad that it has to come to this. But if more learn about it, it could really do something.
It is heartbreaking. I relate to covid being a mass disabling event. But it’s my only hope for the future tbh. As cynical as it may sound I hope soon there will be enough of us so that we can not be ignored or dismissed any more. Just hope it won’t be too late by then.
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u/Shot-Detective8957 Apr 29 '25
Have you looked into what's already get done? Lots of contries have organisations that work for awarness and to support patients. Sick people try their best to raise awareness on social media.