Chronic Fatigue Syndrome Community

I forgot to write this in the first post:

I don't always know what to say to a newbie but I try to give them a "warm fuzzy" and hope that someone else will come along and do the same, plus maybe give them more information. I have some real foggy days and don't know what to say but I don't ever want to leave someone hanging and just ignore them."

There............I think I'm going to get off my soap box before I really alienate everyone.

Love and hugs, Karen ^,,^

Karen, I haven't been posting on the CFS board very long so I should keep my suggestions to myself, but you know I have been on the Webmd boards for years. I will try to do better. I know you are right. I felt badly that I couldn't give one of the newbies more info than I could.

While I consider emotional support an essential part of what these boards are for, maybe we need a list of references to give to the newbies. Those of us that have visited other boards for a long time remember the list for FM. I'll bet one of you has a compiled list like that for CFS in your favorites.

You guys are so terrific and knowledgable I would be happy to post it to a newbie who comes on with some comfort added. If there is not one available, maybe we should compile one. I would be happy to help research if we need to do so.

I remember when I first came on the boards. I was really feeling alone with my disorders. It only took a few visits to feel like I had been wrapped in a warm blanket. CFS has got to be one of the more bewildering disorders.

Just a suggestion for what it is worth. Hugs, Linda

This was an eye-opener. I don't think you're speaking out of turn and you're not going to lose my friendship. You're right. Some of us do take the time to respond to newbies if and when we sign on in a duly manner but some of us are good at not responding to anyone they don't think they want to know. Be they a newbie or an oldie. I know. I fall in the later category and have done the same.

It's always been my way, if I've been off for a while, to read a page then answer a few. I don't have time to answer all of the posts and while that might be deemed a buddy system, it hasn't gotten me any more responses than some newbies. And yes, sometimes my feelings do get hurt. And I know others who do get their feelings hurt, too. By my actions. I admit it. I'm a bad person at times.

I will try my best to answer posts even if its with a hello or goodbye. I do value everyone's friendship and I'll mostly try to welcome newbies. And I'll try to get on board more than once a week.

No bad feelings here. Just tired.

Hugz,

Karen

Hi Karen,

Good Post...I try to make it a habit to look at the newbie posts....if I don't respond, it's usually because I don't have anything further of value to add...other than babble and/or I'm really beat and sore...and I'm terrified that I'll come off "The Wrong Way", so I just keep my trap shut until I can be more human (quite an effort for me sometimes).

I do usually get around to it, but not immediately....I'd much rather post nothing than take a chance of being a grump about it...even remotely.

I get into battles with myself on this topic over at the cancer board....I mean, someone comes on with a question about breast cancer or cervical cancer....I don't have anything there I can add...other than encouragement, but they've already got 3 or 4 of those....lung cancer or a brain tumor, I can speak to...but not that....I probably should jump in more just to say HI though.

Thanks,

Jim

Newbies & Oldies:

I should be ashamed of myself for passing up the newbies. It has happened to me also. I left one board to find new friends here. Others jumped ship too.

Also, the jumble of posts, throw me off. I have not really joined in here very often. I've been wallowing around in my own self-induced pity, and quite frankly, did not want to drag anyone down with me.

Usually, I try to tell something light and funny. Again I only really know about FM and not that much about CFS. But I agree with you, Karen, that is lame excuse.

As for myself, I am finally seeing daylight again. Hope to participate more often.

Hugs & Shrugs........Suellen

Good post Karen.

Wish I had more time to come in and chat. With oldies and newbies....taking care of mom and dil for now. Don't have much time for nothing these days. But with everything in life it will get better.

I do want to thank you for posting to my posts.

I love talking to all. I try always to do my best.

Take care Karen....warm hugs sent to you today....Debi

who have read this and took a few seconds to respond.

I do understand that there are days that we don't feel sociable and up to a long uplifting post but my point is that anyone can post a quick "welcome" to a new person on here and they never have to know that you feel like chewing nails.

I am only referring to the newbies in my open letter. Us oldies know there is selective posting going on and we can either like it or lump it. That was never the issue with me.

I do appreciate the time it took for you all to read and respond.

Hope your day is a bright one.

Hugs to all, Karen ^,,^

I can understand what your saying but if I don't have anything to add, or having a very bad day myself, I tend not to post. There are days you really don't want me to post on here right now believe me.

And like KarenTX said, there have been a few times I have posted on the boards also to get little or no response, so I don't feel as if it is being done intentionally to not post to a new person.

Also my doc won't dx me with CFS so I don't feel like I know enough about the treatments and such of that to help others with it. Feel free to ask away about FM though. I personally think we should have a grouping like we did on the old FM board of helpful tips that alot of us "oldtimers" put together, so new folks could be headed in that direction.

I will admit that I have come on just to check for a quick update on someone when I have the time. I am not in the frame of mind to really do any posting to anyone right now. There are few people who really know me and understand my warped sense of humor that is getting me through right now, others think I am comming off as rude or weird. I would not want to post something that I mean as funny and be thought of as rude right now. Have to try to figure out my own life I guess before I try to help others. If that sounds insensitive sorry, but it what I have to do. I have ALWAYS put others before me, and I can't right now.

I hope all the new folks on the boards make some wonderful friendships like I have. And I hope a time comes soon that I feel good enough to socialize with them and everyone else here.

Hugs Suzy

Keeping in mind that anyone who comes here is dealing with their own fatigue and struggles and don't always have the energy, I really appreciate you posting this, Karen, with such delicacy and thoughtfulness. Very well said. " align="top" border="0"> I usually try and let the community help each other and when I'm in a hurry and see that others have already responded well, I have a feeling I've not welcomed people here as often as I should either. So the reminder has helped me too, thank you.

Im not feeling very well right now and no energy to give as much a reply as I would like to. I once said I needed to step away awhile but do come back to check in on things. Having ME/CFS amongst other things or most of my life I try my best to welcome newbies and normally would write a long response with as much info as I can provide.

But what I found was that the new person would never come back (not always but from what I have seen ...) and never respond to the advice and welcomes that are offered.

I am sorry if I am tired of that. Not to say that I dont welcome them but I have so little energy I would at least like to know that they came back to read what was offered.

And if I ignored any newbie posts recently I sincerely apologize I have not been able to stop in. Between my grandfathers passing, seeing to a lot of his affairs and such, passover, and helping out my mom ... my own health has been pushed aside so Im not faring too well with it all.

right now Im grasping at the tiny little things. and doing the best I can. Just running an errand to bed bath wore me out.

I do want to be able to have the energy to welcome new people and offer information I hate to think they feel left out because I know that feeling all to well.



ran out of steam ...

Thanks for the post Karen, it sort of jars our memory, or thought process. I am from across the street, strictly an FM'er, but so much nonsense over there, and so many moved here, I followed.

I only occassionaly check in on the board. I have been dealing with some strange things. I have just about turned myself into a hermit, or something. I don't know if it is the fatique or what, but I can spend days just laying in bed. Won't go out of house, make phone calls. or anything. Just go to work at 10 at night, come home at 2 A.M. and collapse.

But I can try and do better about checking in on boards, and at least say hi. Thanks for a great post, and for thinking of the newbies.

Karen,hey your not stepping on anyones toes or alienating anyone by your post..You can see that by the many good responses you've received.. I'm guity for not welcoming Jordan since I usually welcome newbies if only to wish them encouragement if notthing else..All of us have been newbies & were all in this together no matter our different dxs or the same..Been on the boards since appx 1998 when it was the only board & have met some wonderful friends here as should be.

Life lately had been hectic as you know but still no excuse! No matter how bad you feel..Yet you always manage replying to those in need! Your emails & phone calls inspire me more than you know.. Just returned from the Dr but will reply to Jordan as soon as I eat my my 'breakfast/brunch' & hope she checks the board,this post as well! Probably nothing much to say but at least can let her know we all care!!

Hope your doing much better then you can start your pulmonary rehab again..

Huggerz & G-D bless as always..Mama Niki

Hi Karen,

You make a good point. I have basically stopped posting here since they changed the format last year or so. I will try to do better.

I do appreciate all of your comments and the time it took to post them.

I surely don't want anyone to beat themselves up over this. My only purpose in posting was to bring it to the forefront so we can all do a little better with the welcomes.

It matters not if someone never comes back to post again. At least we would know that it wasn't because they weren't appropriately welcomed.

Thanks again folks. It's all good.

Love and hugs, Karen ^,,^