ME/CFS phone support group

[Horizon]

ME/CFS weekly phone support group starting Saturdays at 8pm EST.

This is a peer to peer Chronic Fatigue Syndrome/ME support group. This call is designed to support one another through the hardships of this illness by listening and sharing experiences. Join us from the comfort of your own bed, with others who understand and want to talk about things like: symptoms, emotions, socializing, research, treatments, diet, and the isolation of this disease.

All are welcome to join this free conference call (U.S. based phone #). Please be respectful of others opinions and journeys. No solicitation for any business or product will be tolerated as this is for social support only.

Participant Instructions
Dial-In Number: (712) 770-4700
Enter your Access Code: 915110 followed by # sign.

If you have any questions feel free to ask. If you can drop a RSVP message that would be helpful to know who may join.

 

[Horizon]

I definitely know it can wipe people out. For some reason I'm better with talking than typing and no bright screen stimuli.

I figured I'd offer it and it can be as often as people are interested or can handle it. I know it's an isolating disease so it would be cool to chat with others who get it.

 

[Who Me?]

I use Flux and that really helps with the screen brightness. When I first got sick when dinosaurs roamed the earth I was in a phone tree. Now the last thing i want to do is talk.

Forums are my link to the outside world.

 

[bobby]

@Horizon great initiative! I'm better with typing than talking, but I know there's patients who prefer to talk. every initiative to break the isolation is awesome.

 

[Horizon]

I use Flux and that really helps with the screen brightness. When I first got sick when dinosaurs roamed the earth I was in a phone tree. Now the last thing i want to do is talk.

Forums are my link to the outside world.

I use twilight on my phone. It helps but still migraine prone with sensory stuff.

 

[Horizon]

@Horizon great initiative! I'm better with typing than talking, but I know there's patients who prefer to talk. every initiative to break the isolation is awesome.

Thanks Bobby, anyone would be welcome one time or many times, a few minutes or as long as we are up for chatting. I'm open to whatever. Mainly came up with the idea because i need human contact myself and love to discuss ways to get better.

 

[madie]

This is a great idea; I hope you get an interested group together.

Sadly, I'm another one who does better typing than talking. I get confused hearing a voice but not having visual cues.

Good luck with this.

 

[Horizon]

This is a great idea; I hope you get an interested group together.

Sadly, I'm another one who does better typing than talking. I get confused hearing a voice but not having visual cues.

Good luck with this.

Thanks Madie, i hope i find others who want to join.

 

[Abrin]

I am open to chatting on the phone.
I won't be able to do it for a long time as like others I do find it exhausting, but I could do it for a short while.

 

[Cort]

It's a great idea I don't know why talking on the phone can be so exhausting at times, though.

 

[Who Me?]

It's a great idea I don't know why talking on the phone can be so exhausting at times, though.

If they could figure that out my world would change.

 

[Horizon]

Thanks for the feedback guys. I'll go ahead and figure out a time and we can try to see if it works out for us. Of course, anyone is welcome to chat for as little or long as they are able. No judgements.

 

[Horizon]

Guys, i have updated the first post in this thread with the weekly call in info. Our first support call will be Sat at 8pm EST.

Why Sat night? Mainly because I get lonely and know all my healthy friends can go out and figured it may be a good time for bedbound or housebound people to chat.

 

[Kit Cat]

I use Flux and that really helps with the screen brightness. When I first got sick when dinosaurs roamed the earth I was in a phone tree. Now the last thing i want to do is talk.

Forums are my link to the outside world.

me too!

I've developed a habit in the last few years. When someone asks me for a phone number I say "I don't have a phone." This is partially true, since the only phone I have is a free lifeline phone that is broken and I can barely hear anything on it.

It's been extremely nice for me to NEVER get phone calls.

__

I hope this call goes great though. It's a wonderful idea.

 

[Horizon]

Excited about tonight. Hope a few of you guys join us for the first support call.

 

[sasha]

thanks again for organizing this! i was really nice talking with others that understand and to hear about some new things / different perspectives. i forgot how nice some socializing can be

 

[Horizon]

Thanks for joining us. Hope to see you on next week!

 

[Abrin]

I am glad to hear it was a success!
Sorry I wasn't able to make it. Hopefully I will make one of future ones.

 

[Horizon]

I am glad to hear it was a success!
Sorry I wasn't able to make it. Hopefully I will make one of future ones.

I hope you'll be able to join us tonight or another time!

 

[Horizon]

Just bumping this up as a reminder for tonight's phone support group call or another week.