A Dating / Get Together Site for ME/CFS and FM ?

A Dating / Get Together Site for FM and ME/CFS?

  • I'm excited at the thought of a dating/get-together site. I would use it

    Votes: 6 28.6%
  • I'm somewhat excited at that idea. I might use it

    Votes: 10 47.6%
  • It doesn't really turn me on. I don't think I would use it.

    Votes: 5 23.8%

  • Total voters
    21

Empty

Well-Known Member
http://www.soulfulencounters.com/

This one doesn't have a wheelchair logo on and looks promising if it is not a scam. Need to do a $5 one off verification paypal payment but has a radio channel, forum etc.

I would say anyone considering the dating game must be sure to cope with being dumped.
 

donna4

Member
a doctor said with cfids, if you live alone you have no help, if you live with someone you have help but all the stress of a relationship with unusual circumstances. i'm going back to having no help
@Rachael, you are not the only one to unfriend people on facebook because of comments about your health or anything else. a lot of sick people i know have facebook as their only social anything. there are many cfs groups but it doesn't matter what group, what topic, people argue. the support can be a lifesaver. it is the nature of the anonymity and the quick reply that makes misunderstandings frequent and with rapid responses people say the first thing that comes to their minds uncensored and it can be intense. the whole unfriending/blocking thing is like junior high school.
 

donna4

Member
Hi, Just wanted to add a bit to the convo. Indeed, I belong to this group on FB:
https://www.facebook.com/groups/242414882495980

That group is mainly people in the UK, and I'm in the US. The challenge is also, is that it's mainly a discussion/fun group. Which is good, but the problem is, if you're really serious about finding a compatible person you have to invest more time into trying to get to know their preferences. EG: on dating sites you can see any number of these aspects: location, political affiliation, vehicle ownership, number of children, marital status, education level, hobbies, sexual preference, and the like. I think a more free flowing atmosphere can be fun, and there are some interesting group discussions. But, when it comes to the nuts and bolts of facts, you have to invest more time in talking with someone to get to the "demographics". My subscription with match dot com just ended. What I like about it is that I can see certain preferences upfront. I can also do a keyword search on match ("disabled", "chronic fatigue", etc.). Now I'm on P.o.F. which I like much less….because it's more free flowing, and there are preferences that I can't see (eg political leanings). For me it's harder to work with something more open-ended. It just takes more time, and looking through - which tires me out.

I think the fb group is good if you like to do a lot with social media. Commenting, sharing silly pictures, or start discussion topics. It can become a community venture…and, you just have to keep your eyes peeled who might be interesting to you, and then contact them. But, because of FB's privacy settings you may not be able to see any info about the person you want to talk with before contact. Then, if there is awkwardness between 2 people from the group -- you're still part of a larger dating group. If something goes "wrong" between 2 people from the group, it can cause one to shy away from using the group again -- which defeats the purpose of seeking a partner within the group. (I hope this makes sense).

If we did have an ME/CFS dating site, I think an important feature/question would need to be whether or not one is able to travel.

Maybe something one can do is use a system like POF (because it's free), and provide one's profile to a private user data base within our community. In other words, make us a sub-group of something bigger, like POF. And, that way, the communication can take place on POF, for instance.

I'm not advocating for POF (because I sort of hate it), but it's a mostly free platform. Lack of certain privacy is also implied if it's done this way - because one's profile is already in the ether.

I hope this isn't too complicated. I've been doing this for a long time, and it's difficult, and can be very time consuming.
i was in eddie's group for years. there never seemed like there was a whole lot of dating going on because it was also a support group, more like what are you having for dinner etc. on ok cupid there are some cfs/mcs people to search for. there are several dating disability sites. someone contacted me recently who said he was willing to travel and loved the area i live in and then it turned out he had no money and no way to leave where he was.
 

donna4

Member
I agree that logistically a healthy person would be best - someone to help out physically.

That wants to spend their time with someone who can't participate in the things they want to participate in? I think as we get older that's probably less of an issue.

To tell you the truth when I start thinking about dating I think - well, I'm going to tell that I can't exercise, that I can't go out that much and here's the kicker - I have MCS and I have to sleep outside....That's where I stop!

How about being with someone who gets where you are at? Would that be helpful?
why is the need to sleep outside a deal breaker?!
 

donna4

Member
I agree that logistically a healthy person would be best - someone to help out physically.

That wants to spend their time with someone who can't participate in the things they want to participate in? I think as we get older that's probably less of an issue.

To tell you the truth when I start thinking about dating I think - well, I'm going to tell that I can't exercise, that I can't go out that much and here's the kicker - I have MCS and I have to sleep outside....That's where I stop!

How about being with someone who gets where you are at? Would that be helpful?
sleeping outside shouldn't be a deal breaker!
 

donna4

Member
I did before I posted. Maybe not the right ones? There was an endless positive spin on disability. The images I was bombarded with was muscular, fit looking people all done up in a wheelchair as if it was a mere accessory.


These people have energy.
some have energy and are in wheelchairs and some have ms and other illnesses that do cause fatigue.
 

Empty

Well-Known Member
sleeping outside shoul(())dn't be a deal breaker!
Sleeping outside is sexy. I know because I did it for years lol ()so long as you have access to wash facilities, a stream or something )

An example of a positive spin on this would be to market yourself with the 'tiny life' crew... As kondo is currently trending...so is downsizing and why not tag on altruistic reasons to it too, other than illness. Environment, zen etc. :)
 

Empty

Well-Known Member
some have energy and are in wheelchairs and some have ms and other illnesses that do cause fatigue.
I was referring to the front pages of the dating sites I linked to rather than the reality.

Fatigue is not the main issue for me but neurological/immune disability
 

donna4

Member
A friend mentioned a month or so ago that she had joined an ME/CFS/FM singles group on Facebook. I don't know the details and have emailed her to ask about the group. It might be this: https://www.facebook.com/groups/242414882495980/
this is the new manifestation of eddie's group. some of the original people are there plus new ones. it is more like a friendship group, joking around, playing games and exchanging recipes--but you never know. there are disability dating sites as well.
 

Horizon

Active Member
I have tried the general disability sites but found most charge money, have nobody with ME/CFS or barely any active users.

I wish there was a source, it seems like with millions of disabled people there really should be better ways to connect.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I have tried the general disability sites but found most charge money, have nobody with ME/CFS or barely any active users.

I wish there was a source, it seems like with millions of disabled people there really should be better ways to connect.
We're still planning to do it. It's a time and resource issue right now but it's near the top of our list.
 

Horizon

Active Member
We're still planning to do it. It's a time and resource issue right now but it's near the top of our list.
:woot: i wanted to find an applause smiley but that doesn't exist but i am laying here applauding your efforts!
 

Ladyliegh

Active Member
What about ; Friends with ME/CFS?
I mostly would like to chat, if I connected with someone that would be kool, but I would really just like to chat with like minded others. Like tonight, I am chilling & it would be great to chat with someone about all the research I looked at this weekend.
 

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