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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lindasch100 04/02/2016

I have bred horses for 15 yrs, cannot do it any more. I have had a Facebook page for the horses. I have a lot of FB friends. I now have only two horses so I am changing my FB page to include other things, most specifically my CFS. I just posted about it on my page Some people know about this, most do not.
https://www.facebook.com/linda.sterling.904

I am interested in how people react. Maybe they will ignore it, maybe won't believe me, maybe will want to know more. I am certainly willing to talk a lot more about it.
We will see how this goes
Linda

DarlaC 04/02/2016

I'm not on FB Linda, so I can't access your link.

I hope that telling your friends about CFS is yet another proof of a really educated, active, forward thinking person is disabled by this hideous disease. The more we get it "out there" the more the chance that someone will actually care about us. AND DO something to help us.

I'd be interested to know how your friends react.

triunfadora 04/02/2016

Wow, brave girl! I told my friends and it was a mixed bag. Most promised to be there for me, but promptly forgot. I think people get compassion fatigue. I hope it goes well for you. We're here for you, no matter what. Much love.

RichieD 04/02/2016

I told a bunch of people when I got diagnosed. Many of them just laughed at me...really, they did. I don't tell anyone about my illness anymore. It's worked out much better for me that way...they probably think I'm a junkie or a drunk.

At least now they leave me alone. There are so many people on drugs here that I'm accepted now. I just blend into the background.

scootermom 04/04/2016

I am impressed with your FB post, it was well written. Simple and to the point. I don't usually post about my personal challenges, but I will post about CFS/ME awareness day ( in May?) and medical breakthrough regarding this illness.

I am finding that the name "M.E." instead of "Chronic Fatigue" seems to resonate more with people. Saying that you are ill with " Chronic Fatigue" is like saying that you have a limp and a speech defecit, when you have suffered a stroke! Just practise saying Myalgic Encephalomyelitis a few times....

I've sent you a FB friends request, but don't feel obligated to accept.

Hugs from Scootermom.

scootermom 04/04/2016

Oh forgot to tell you that Scootermom is FrederikaScootergirl on FB.

LOL!

Nina1959 04/05/2016

Well written Linda and the response posts so far are very supportive, so that bodes well. I agree that those of us who feel able to can advocate best for those who cannot - such an individual decision. I've been a vocal advocate for years, carrying printed info for those who ask and giving my doctors any new info I find that is from medical journals, etc. Folks have said that when they have heard others poo-pooh CFS as a trendy illness they now know better and stand up for the afflicted individual. I applaud your bravery

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