Thank you for writing this—I greatly appreciate the chance to understand better what life impacts MECFS has. As a cancer survivor, the comparisons/contrasts do hit home for me. I know a bit about EDS, and where it leaves a person when all the doctors don’t know or don’t believe. Your writing and insight bring so much to all of us - I’m rooting for you 🧡
This was so brave of you to share. Thank you. As someone living with moderate LC/MECFS, I can relate to so much of this. I'll be up here in Virginia, cheering for your Battery C! ❤️
Thank you so much for writing this. I actually saved it in a bookmark folder I named "Explaining CFS," for resources to share with people when I want them to understand what my illness is and how it works. You do a beautiful job of explaining it all - both the facts and how it feels. So much here resonates. About the cancer comparison (my sister, who has both ME/CFS and got cancer, saw it firsthand). About what a miracle it is we can be both sane and cheerful given all this. About trying to find doctors... all of it. I'm sorry you get it, but I'm glad if we have to be in this position, we're in it together, and to see my experience reflected so well.
As for some more of the specifics...
I'm in the 25% group too! And yes, it was humbling and intense to realize that's where I belonged.
Re possible mechanisms of the illness, are you also aware of theories about structural issues (CCI, Chiari, tethered cord) and venous compression syndromes? They're kinda the new frontier the last few years. Worth looking into if you haven't already.
Though there are no treatments for ME/CFS, there are lots for our comorbid conditions - though of course we all have varying degrees of success with them. I'm sure you're getting plenty of info from other patients in the groups, but in case you haven't, I'd be happy to share what I know.
Wow, what a terrible thing to live with. I admire that you are talking about it publicly on the internet. Thankfully my fatigue is nowhere near as bad as the symptoms you describe, but thank you for educating me and others on this important topic :)
Thank you so much for writing this!! My 19 year old developed long-covid back in Sept 2021 and probably moved into ME territory around August 2022, at the start of her senior year (haven't pursued getting an official diagnosis because of time, money and my own health problems). We quickly caught on to the concept of pacing and figuring out ways to conserve her energy for things that are important to her (art and her friends). But her dad really struggles with understanding why she can spend three hours on a video call with her friends, but a 45 minute trip to the store can wipe her out for a day. Hoping that sharing this with him will help him understand a little better. 🙂 Sending you good vibes, continued support, and that Battery C gets a little more juice.
Thanks for writing this Jess, so well said! I have moderate ME and POTS and it’s so hard to explain to folks, especially the medical community over here in the UK.
Thank you for writing this—I greatly appreciate the chance to understand better what life impacts MECFS has. As a cancer survivor, the comparisons/contrasts do hit home for me. I know a bit about EDS, and where it leaves a person when all the doctors don’t know or don’t believe. Your writing and insight bring so much to all of us - I’m rooting for you 🧡
Thank you for sharing this.
This was so brave of you to share. Thank you. As someone living with moderate LC/MECFS, I can relate to so much of this. I'll be up here in Virginia, cheering for your Battery C! ❤️
Thank you so much! One of the only silver linings of getting this bad is finding the other people who are also a part of this club. ❤️
Thank you so much for writing this. I actually saved it in a bookmark folder I named "Explaining CFS," for resources to share with people when I want them to understand what my illness is and how it works. You do a beautiful job of explaining it all - both the facts and how it feels. So much here resonates. About the cancer comparison (my sister, who has both ME/CFS and got cancer, saw it firsthand). About what a miracle it is we can be both sane and cheerful given all this. About trying to find doctors... all of it. I'm sorry you get it, but I'm glad if we have to be in this position, we're in it together, and to see my experience reflected so well.
As for some more of the specifics...
I'm in the 25% group too! And yes, it was humbling and intense to realize that's where I belonged.
Re possible mechanisms of the illness, are you also aware of theories about structural issues (CCI, Chiari, tethered cord) and venous compression syndromes? They're kinda the new frontier the last few years. Worth looking into if you haven't already.
Though there are no treatments for ME/CFS, there are lots for our comorbid conditions - though of course we all have varying degrees of success with them. I'm sure you're getting plenty of info from other patients in the groups, but in case you haven't, I'd be happy to share what I know.
Wow, what a terrible thing to live with. I admire that you are talking about it publicly on the internet. Thankfully my fatigue is nowhere near as bad as the symptoms you describe, but thank you for educating me and others on this important topic :)
Thank you so much for writing this!! My 19 year old developed long-covid back in Sept 2021 and probably moved into ME territory around August 2022, at the start of her senior year (haven't pursued getting an official diagnosis because of time, money and my own health problems). We quickly caught on to the concept of pacing and figuring out ways to conserve her energy for things that are important to her (art and her friends). But her dad really struggles with understanding why she can spend three hours on a video call with her friends, but a 45 minute trip to the store can wipe her out for a day. Hoping that sharing this with him will help him understand a little better. 🙂 Sending you good vibes, continued support, and that Battery C gets a little more juice.
I sure hope it can help her feel understood. It's so hard to explain to people! Thank you for your kid words.
Thank you for writing this. I plan on placing this in my medical binder. Supposedly my ME is "mild" but is certainly does not feel that way.
In my opinion, the official definition of "minor" is what most people would call "severe."
Thanks for writing this Jess, so well said! I have moderate ME and POTS and it’s so hard to explain to folks, especially the medical community over here in the UK.
Thank you so much. It means a lot. I keep thinking we might be making progress but we have far to go.