Chronic Fatigue Syndrome Community
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Where have all the CFS/CFIDS folks gone?
Bspidey posted:
I just joined this group and was shocked to find only 23 people on board. Reading over a few of the posts, it seems perhaps this site has been updated recently and that might account for the attrition.
Could someone give me an update?
Thanks,
Bspidey
Could someone give me an update?
Thanks,
Bspidey
34 Replies |Watch This Discussion | Report This| Share this:Where have all the CFS/CFIDS folks gone?I just joined this group and was shocked to find only 23 people on board. Reading over a few of the posts, it seems perhaps this site has been updated recently and that might account for the attrition.<br /><br />Could someone give me an update? <br /><br />Thanks,<br />Bspidey
Grampa_Bear responded:
Actually, this is probably the slowest board on the entire system. To be honest, I was kind of surprised it got carried over to the new system. The other board I was involved with that was very slow was the 'Cancer Support Group"...and when it was slow, I always looked at that as being a good thing as no one was getting newly diagnosed, or things were going good for them.
Here, it's more likely that they just plain feel too lousy to get online.
You're right too....people are pretty resistant to change....the same, old, comfortable routine is what people tend to stay with.
So, it's not you...it really IS slow here.
Jim
Here, it's more likely that they just plain feel too lousy to get online.
You're right too....people are pretty resistant to change....the same, old, comfortable routine is what people tend to stay with.
So, it's not you...it really IS slow here.
Jim
Report This| Share this:Where have all the CFS/CFIDS folks gone?Actually, this is probably the slowest board on the entire system. To be honest, I was kind of surprised it got carried over to the new system. The other board I was involved with that was very slow was the 'Cancer Support Group"...and when it was slow, I always looked at that as being a good thing as no one was getting newly diagnosed, or things were going good for them.<br /><br />Here, it's more likely that they just plain feel too lousy to get online.<br /><br />You're right too....people are pretty resistant to change....the same, old, comfortable routine is what people tend to stay with.<br /><br />So, it's not you...it really IS slow here.<br /><br />Jim
Fibrosarah replied to Grampa_Bear's response:
good morning Jim. Well, it's morning in CA. I am thinking they have a life? LOL.
I routinely check in, but as you said, never many posts. I just hope it's because they are busy, and not find us boring or something!
Better to think they are too busy rather than to lousy.
I routinely check in, but as you said, never many posts. I just hope it's because they are busy, and not find us boring or something!
Better to think they are too busy rather than to lousy.
Report This| Share this:Where have all the CFS/CFIDS folks gone?good morning Jim. Well, it's morning in CA. I am thinking they have a life? LOL.<br /> <br />I routinely check in, but as you said, never many posts. I just hope it's because they are busy, and not find us boring or something!<br /> <br />Better to think they are too busy rather than to lousy.
Grampa_Bear replied to Fibrosarah's response:
We Can Have A Life??!!! Hully-gully-wumperzip (to coin an old Calif. term).
Yeah, I'd like to think that too, but having experienced 'our friend', my guess would be the safe money is on the latter - unfortunately.
Jim
Yeah, I'd like to think that too, but having experienced 'our friend', my guess would be the safe money is on the latter - unfortunately.
Jim
Report This| Share this:Where have all the CFS/CFIDS folks gone?We Can Have A Life??!!! Hully-gully-wumperzip (to coin an old Calif. term).<br /><br />Yeah, I'd like to think that too, but having experienced 'our friend', my guess would be the safe money is on the latter - unfortunately.<br /><br />Jim
MSandyd responded:
I just found this discussion group. I am suffering from cfs and fibro plus a host of other problems. I hope I can find support here. I am from SE Tennessee and have good doctors. But they just don't get the cfs thing. The medical profession really needs a crash update on this.
Report This| Share this:Where have all the CFS/CFIDS folks gone?I just found this discussion group. I am suffering from cfs and fibro plus a host of other problems. I hope I can find support here. I am from SE Tennessee and have good doctors. But they just don't get the cfs thing. The medical profession really needs a crash update on this.
Caprice_WebMD_Staff responded:
Jim explained it all well.
We're glad you and MSandy found us.
In addition to what Jim said, it also became difficult for people to even find these forums. That has recently changed and we're starting to see new people like you finding their way here. I'm so glad because these communities can be a great place for support.
We're glad you and MSandy found us.
In addition to what Jim said, it also became difficult for people to even find these forums. That has recently changed and we're starting to see new people like you finding their way here. I'm so glad because these communities can be a great place for support.
Report This| Share this:Where have all the CFS/CFIDS folks gone?Jim explained it all well.<br /><br />We're glad you and MSandy found us.<br /><br />In addition to what Jim said, it also became difficult for people to even find these forums. That has recently changed and we're starting to see new people like you finding their way here. I'm so glad because these communities can be a great place for support. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
Grampa_Bear replied to MSandyd's response:
Hi Sandy,
Welcome...that's what we're here for, but be advised, this is one of the slowest exchanges on here, but I try to check it at least every couple of days if not sooner just to be sure that someone isn't in here looking for some support.
Glad you found us, but sorry for the reason you had to.
(just watch out for that old grump Grampa Bear is all
)
Jim
Welcome...that's what we're here for, but be advised, this is one of the slowest exchanges on here, but I try to check it at least every couple of days if not sooner just to be sure that someone isn't in here looking for some support.
Glad you found us, but sorry for the reason you had to.
(just watch out for that old grump Grampa Bear is all
)Jim
Report This| Share this:Where have all the CFS/CFIDS folks gone?Hi Sandy, <br /><br />Welcome...that's what we're here for, but be advised, this is one of the slowest exchanges on here, but I try to check it at least every couple of days if not sooner just to be sure that someone isn't in here looking for some support.<br /><br />Glad you found us, but sorry for the reason you had to.<br /><br />(just watch out for that old grump Grampa Bear is all <img src="http://img.webmd.com/community/images/wink.gif" align="top" border="0"> )<br /><br />Jim
karenrugs replied to Grampa_Bear's response:
I'm here! Again. Finally after weeks and weeks of being gone. Shoot, even forgot my password and thought I would have to reregister after a little pop-up popped up informing me the user didn't exist.
But, she does exist. I thought. Maybe she's not typing in the right numbers. She does that sometimes. That was right.
Well, gang. I'm sitting here waiting for the grass to dry up a little so I can mow before the next rainfall. I keep getting e-mails from a nursery here in town and they're wanting me to fertilize but can't do that until I mow. Can't mow until it quits raining. What a life.
Finally starting to feel human again after that last treatment a month ago. NO MORE CHEMO. I'm in remission, again. The doc said the pet scan was negative. But, WOW! that last treatment knocked my legs out from under me. When I finally felt good enough to get on on-line, I had way over 300 messages. It's taken a few days to get through them. Of course, most of the junk was deleted. Darn that junk mail.
But, I expect to be back most days. Hahahaha...
Take care and be well.
Hugz,
Karen
But, she does exist. I thought. Maybe she's not typing in the right numbers. She does that sometimes. That was right.
Well, gang. I'm sitting here waiting for the grass to dry up a little so I can mow before the next rainfall. I keep getting e-mails from a nursery here in town and they're wanting me to fertilize but can't do that until I mow. Can't mow until it quits raining. What a life.
Finally starting to feel human again after that last treatment a month ago. NO MORE CHEMO. I'm in remission, again. The doc said the pet scan was negative. But, WOW! that last treatment knocked my legs out from under me. When I finally felt good enough to get on on-line, I had way over 300 messages. It's taken a few days to get through them. Of course, most of the junk was deleted. Darn that junk mail.
But, I expect to be back most days. Hahahaha...
Take care and be well.
Hugz,
Karen
Report This| Share this:Where have all the CFS/CFIDS folks gone?I'm here! Again. Finally after weeks and weeks of being gone. Shoot, even forgot my password and thought I would have to reregister after a little pop-up popped up informing me the user didn't exist.<br /> <br />But, she does exist. I thought. Maybe she's not typing in the right numbers. She does that sometimes. That was right.<br /> <br />Well, gang. I'm sitting here waiting for the grass to dry up a little so I can mow before the next rainfall. I keep getting e-mails from a nursery here in town and they're wanting me to fertilize but can't do that until I mow. Can't mow until it quits raining. What a life.<br /> <br />Finally starting to feel human again after that last treatment a month ago. NO MORE CHEMO. I'm in remission, again. The doc said the pet scan was negative. But, WOW! that last treatment knocked my legs out from under me. When I finally felt good enough to get on on-line, I had way over 300 messages. It's taken a few days to get through them. Of course, most of the junk was deleted. Darn that junk mail. <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0"> <br /> <br />But, I expect to be back most days. Hahahaha...<br /> <br />Take care and be well.<br /> <br />Hugz,<br /> <br />Karen
Grampa_Bear replied to karenrugs's response:
Hi Karen!
You don't even want to know how many times this past week or so I've wondered how you were doing.
YAY!! Chemo's Over!! Glad to hear that you have things on the run there.
As to your junk mail...you might want to look into a utility I use called "Mail Washer". You get it installed, tell it where your mail program is, set it up so it can log in...then when you want to check your mail, you launch it first, it goes out and reads all the headers, does a check for spam/junkmail (even gets your antivirus involved), marks them for deletion...then you go over the headers to see if you agree with it's assessment, then click "Process Mail"...it gets rid of all the junk, then launches your mail program...works good....it's freeware, but there's a 'Nag Screen" at the top of the window wanting you to buy the full version (about $30 I think), but it works fine in the free version too.
Might save you some grief not having to wade through all the gunk.
Glad to see you back on.
Take Care,
Jim
You don't even want to know how many times this past week or so I've wondered how you were doing.
YAY!! Chemo's Over!! Glad to hear that you have things on the run there.
As to your junk mail...you might want to look into a utility I use called "Mail Washer". You get it installed, tell it where your mail program is, set it up so it can log in...then when you want to check your mail, you launch it first, it goes out and reads all the headers, does a check for spam/junkmail (even gets your antivirus involved), marks them for deletion...then you go over the headers to see if you agree with it's assessment, then click "Process Mail"...it gets rid of all the junk, then launches your mail program...works good....it's freeware, but there's a 'Nag Screen" at the top of the window wanting you to buy the full version (about $30 I think), but it works fine in the free version too.
Might save you some grief not having to wade through all the gunk.
Glad to see you back on.
Take Care,
Jim
Report This| Share this:Where have all the CFS/CFIDS folks gone?Hi Karen!<br /><br />You don't even want to know how many times this past week or so I've wondered how you were doing.<br /><br />YAY!! Chemo's Over!! Glad to hear that you have things on the run there.<br /><br />As to your junk mail...you might want to look into a utility I use called "Mail Washer". You get it installed, tell it where your mail program is, set it up so it can log in...then when you want to check your mail, you launch it first, it goes out and reads all the headers, does a check for spam/junkmail (even gets your antivirus involved), marks them for deletion...then you go over the headers to see if you agree with it's assessment, then click "Process Mail"...it gets rid of all the junk, then launches your mail program...works good....it's freeware, but there's a 'Nag Screen" at the top of the window wanting you to buy the full version (about $30 I think), but it works fine in the free version too.<br /><br />Might save you some grief not having to wade through all the gunk.<br /><br />Glad to see you back on.<br /><br />Take Care,<br /><br />Jim
Caprice_WebMD_Staff replied to karenrugs's response:
YAY!!! No more Chemo!!!
It's really good to have you back!
By the way, if you ever DO forget your password, we can reset your password for you. Just write to us at exchangemanagement@webmd.net and we'll take care of it for you. (That's for anyone having this problem.)
It's really good to have you back!
By the way, if you ever DO forget your password, we can reset your password for you. Just write to us at exchangemanagement@webmd.net and we'll take care of it for you. (That's for anyone having this problem.)
Report This| Share this:Where have all the CFS/CFIDS folks gone?YAY!!! No more Chemo!!!<br /><br />It's really good to have you back!<br /><br />By the way, if you ever DO forget your password, we can reset your password for you. Just write to us at exchangemanagement@webmd.net and we'll take care of it for you. (That's for anyone having this problem.)
kimber1273 responded:
I'm hereeee, lol,!
hi i just found this site....i hve cfs ad fibro and other problems as well ....ive been out of work since 16apr..and still trying to get the drs to get the right papers to my employer and my insurance co..im by myself...single and no other source of imcome...when i can ive been looking online as my mother was the same way before she died...with the drs they do the blood test they usually do and thats it...i cant get in the shower...i do sometimes b4 i go out and have given up trying to put on make up or doing my hair....boy i never thought i would leave the house without shower make up and doing hair..but im afraid if i do that i wont hve enough energy to do what i have to do....and i have to wait for a good day to be able to go out...have the drs found anything else in ur blood work..or have they checked for anything else...i have chronic pain .... the pills she gave me... r nothing...people who r not in pain or have cfs do not understand what we r going thru..hope u r having a good day
Report This| Share this:Where have all the CFS/CFIDS folks gone?hi i just found this site....i hve cfs ad fibro and other problems as well ....ive been out of work since 16apr..and still trying to get the drs to get the right papers to my employer and my insurance co..im by myself...single and no other source of imcome...when i can ive been looking online as my mother was the same way before she died...with the drs they do the blood test they usually do and thats it...i cant get in the shower...i do sometimes b4 i go out and have given up trying to put on make up or doing my hair....boy i never thought i would leave the house without shower make up and doing hair..but im afraid if i do that i wont hve enough energy to do what i have to do....and i have to wait for a good day to be able to go out...have the drs found anything else in ur blood work..or have they checked for anything else...i have chronic pain .... the pills she gave me... r nothing...people who r not in pain or have cfs do not understand what we r going thru..hope u r having a good day
Caprice_WebMD_Staff replied to annellb1's response:
Hi Annellb and welcome to WebMD!
Report This| Share this:Where have all the CFS/CFIDS folks gone?Hi Annellb and welcome to WebMD! <img src="http://img.webmd.com/community/images/smile.gif" align="top" border="0">
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