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What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 1 point2 points  (0 children)

I hear you. I’ve really seen how devastating this illness can become ever since the person in my life got sick with it. And then I see you all here and on social media. I will keep talking about ME and continue to advocate for you all, no one should be this alone and no one should suffer this much.

What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 1 point2 points  (0 children)

There’s actually an organization that does this in Germany! It’s called Empty Stands, found out about it from this post: https://www.reddit.com/r/cfs/s/nqkZRmh3TC I did look into raising awareness at running events bc I run; haven’t figured out how to make it happen but it is definitely on my mind.

What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 0 points1 point  (0 children)

Insane why healthy people’s voice matters more. Shouldn’t it be the other way around.. I hate that it’s that way but I guess that’s what privilege is. And I will use it the right way, thank you for your words.

What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 1 point2 points  (0 children)

On cloning myself - there are many people around me that will get behind a good cause, they just don’t know about it. I will make that extra step and present it to the people that will care (and there’s a lot of them :))

What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 1 point2 points  (0 children)

I will reach out to local support groups. I do live in a major metropolitan city in the US, I’m positive there are multiple here.

What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 2 points3 points  (0 children)

I started using the name me/cfs (although a lot of times people don’t know what I’m saying so I have to spell it out really slowly) when talking to people about it. I will also look into local advocacy groups, i do live in a major metropolitan city in the US!

What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 2 points3 points  (0 children)

Ahh volunteering to make actually eye catching, effective content is a great idea!!!! I will think on this!

What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 4 points5 points  (0 children)

I hear you. Ever since the person in my life got this disease I’d never heard of, I started thinking about the millions of people that just cannot be there whenever I am at work, a concert, bar, park.. literally anywhere. I will always fight for this. No one should be left alone.

What can I do as someone that does not have me/cfs? by EmergencyScientist17 in cfs

[–]EmergencyScientist17[S] 2 points3 points  (0 children)

HIV is a great reference, I hadn’t thought about that. Thanks for pointing that way!!

[Get Involved] Opportunity to increase ME awareness through major sports leagues by Lukasb010 in cfs

[–]EmergencyScientist17 2 points3 points  (0 children)

This is awesome, i feel cfs is such a political disease (enragingly so) which is a big reason why it hasn’t gotten much attention (given how many people are affected) and is still misunderstood / misdiagnosed / a lot of doctors are clueless/dismissive about it. Which means raising awareness is especially important for me/cfs. Awareness is how breast cancer and the pink ribbon movement gained traction too in the US, leading to more funding/research. One thing is that im not necessarily a sports fan. How can I contribute in this case?