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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RichieD 07/10/2016

We have to get the description of ME/CFS in our group header fixed. The illness is definitely not "a sense of exhaustion that isn't caused by exertion". We aren't just people who feel tired for unknown reasons, it's a physical illness with actual symptoms like any other illness.

ladybugdreams 07/12/2016

I think it is so important to have the right description of our illness on each site. It is hard enough to be heard without CFS/ME sites using limp descriptions, not encouraging for newbies who may want to join. Had I read that I may not have joined & missed out on all of my friends & the help I have received. hugs, Denise

DarlaC 07/12/2016

Just finding how to post on the boards, Richie. Sorry I'm late!

Hallensteins glad our own support group wold mischaracterize such a devastating illness. Like this hasn't been the problem with CFS all along.

Wonder if there is anything we can do. I'm going to speak to one of the group leaders and see!

RichieD 07/12/2016

Apparently they've already been told about these issues by more than one member. I'll give them a week and then stop posting until they fix it. This is not some minor procedural matter, it's fundamental to what this so-called support group is about.

Falconwings 07/14/2016

Gee, I will miss you Richie if you go! You are correct about the descriptions of both groups being way off! I truly hope this gets better and will also put in a displeased complaint.
Lord have mercy....

2DanceAgain 07/21/2016

I sent a request asking that they review the description of our illness at the solvecfs.org website. I stating that the current description was insulting and minimize our debilitating illness. We will see if it does any good.

RichieD 07/22/2016

It's been changed, but it still doesn't reflect what's currently known about the illness. There's nothing about exercise intolerance or other physical symptoms that have been well documented now. It sounds like a description from a textbook published about thirty years ago.

And the sexual abuse group still has a description that says sexual abuse is culturally relative rather than something civilized people everywhere recognize as totally unacceptable. Calling sexual abuse culturally relative clearly implies that things like rape and child sexual abuse wouldn't be wrong when they're done in places where you're not likely to face consequences.

Rosi 08/22/2016

I totally agree with you also Richie. First things first. It's good to see your dino icon still is on here. I haven't been able to retrieve a password for some 4 months let alone figure out how to post a profile or put up a new icon. Why they would change the definition. I don't recall if they had one listed before. If it's the same people running the site as before, one would think they'd be more tuned into what's happening with people with this illness. I will do what I can to send some posts. Hate to see you go also. Am hoping you're still here to receive this. Now I'm Rosi aka Rosa before the new site.

LilRed67 09/14/2016

I can't even read the description because the header is on top of it.

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