Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

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/ Chronic Fatigue Syndrome Support Group

Canary

PilotRock
PilotRock
I googled "Canary in a coal mine". My problems aren't/weren't as severe as Jen Brea's, but that is so scary, and so me. I googled ME, and I have at least 14 of the symptoms. I really wonder if I have ME.
I'd never heard of ME or "Canary..." until I found this support group. You guys are doing a great job with the info sharing.
deleted_user
deleted_user
Hello,

To the best of my knowledge they don't diagnose ME in the US, only CFS.
lulu555
lulu555
There is a "Canary in a Coal Mine" facebook page also. It's great seeing the continual progress being made in making this documentary. I feel bad that she is in a wheelchair, but she does have support to help her get the word out about CFIDS/ME.
DarlaC
DarlaC
The CDC decided to call what we have CFS. They apparently choose to keep our illness understated and underfunded. M.E. is what the illness is called in the rest of the world, if I'm not mistaken.

Groups have tried to get the name changed, since we all know that "fatigue is a far cry from the exhaustion and myriad of other symptoms we suffer through daily.

There ARE doctors out there that are researching and trying to help us. Still, many believe that it's all in our head and a good thyroid check and a long nap will solve everything. Oh yea, and a nice jog!!

This is why this support group is so important. We don't BS about how bad it gets, how sick we can become, how terrible the crashes are, how many friends and jobs we've lost......we just tell it like it is.

I'm happy you found us. We all have hope that someday, someway, despite the opposition, an answer will be found to help us.

I pray it happens in my lifetime!
lulu555
lulu555
I'd like to know how long this CFS has been around, but not given a name yet? Maybe that's something I could work on. Doctors need to get their heads out of the sand and realize that we all can't be wrong about our symptoms. And effective treatment is LONG overdue. I know I need something that would boost my immune system to normal levels, and haven't found any treatment with any lasting effects. That's just one area of concern. WE NEED A CURE NOW!!!
Southbound
Southbound
I would LOVE a cure too, lulu. And until then, I'd just like to be recognized as having a REAL disease. It would be great if they would change the name of this to Myalgic Encephalomyelitis. Now that sounds like a real thing.