To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way

JennyJenny

Well-Known Member
This was posted in a small forum I moderate and I thought it was a very good personal story and advice.

I especially liked the comments from people about the blog she opens with, especially the one from Debbie Anderson. I now have to take Fludrocortisone as my BP went down to 80/50 and pretty much stayed there. Although it can hit 120/80 it is rare it does that and I am still very weak and fatigued, to say the least.

To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way
 

JennyJenny

Well-Known Member
Is your forum still active, Jenny? How are you doing?
OOps, I can't PM you? I don't see the option on your page. It is a small pinboard forum and I just post medical research and link blogs and such.

I have trouble navigating most forums for the research and I thought I would start one on the pinboard because it is easier for me to keep all the research together. Then of course others can pin what they find and discuss.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
OOps, I can't PM you? I don't see the option on your page. It is a small pinboard forum and I just post medical research and link blogs and such.

I have trouble navigating most forums for the research and I thought I would start one on the pinboard because it is easier for me to keep all the research together. Then of course others can pin what they find and discuss.
Thanks...She's an excellent writer. I don't think she's doing very well...She did a pretty hard to write blog at the ten year point last year

In which she describes her brain as mush and all the treatments she's taking just to try to stay stable. She's only had a couple of blogs since then. It's such a shame - she is so talented. She said

The Great Truth, in the end, is that this sucks and it’s unfair, it’s eaten ten years of my life, the brief span of existence I’ve been granted is largely going to waste, there are no miracles on the horizon, it’s likely to suck to a greater degree for me again in the future, it’s making a lot of other people’s lives suck too – more of them, each and every day – and we need to do a lot more about it.
 

Abrin

Well-Known Member
This was posted in a small forum I moderate and I thought it was a very good personal story and advice.

I especially liked the comments from people about the blog she opens with, especially the one from Debbie Anderson. I now have to take Fludrocortisone as my BP went down to 80/50 and pretty much stayed there. Although it can hit 120/80 it is rare it does that and I am still very weak and fatigued, to say the least.

To Those Newly Diagnosed With ME/CFS: Four Things I Learned the Hard Way
Thanks for the link!
 

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