I am so glad for this! I have been very isolated from this disease and typing is usually hard for me too - plus sometimes you just want to hear other people's voices.
A note for those who have trouble on computers, you can turn the brightness all the way down (on my Dell laptop it is Fn key + F4), and you can also add a free program you find online that will darken it even further if needed. You can do this for your phone too. Additionally, you can increase the size of letters on almost any screen (in my laptop it's the Ctrl key and the plus + sign).
I have not written on here in years, but this message made its way to a yahoo listserve and was sent to some 200 people along the Eastern Coast of the US. I have been really wishing there would be a situation like this again at some point, just to be able to talk to other people who get it.
I would really like free one-on-one therapy to cope with all the emotions that come with being so seriously ill, if anyone knows of someone who offers this who actually knows what they're doing - please respond with their info! But in the absence of that, it would be really nice to at least talk with other people who are also dealing with this unique kind of suffering.
I was part of a phone group in the past, when I had been ill for about as long as Horizon has been. I too was struggling with doctors who had no clue what to do. Now I am finally finding some answers for myself on my own, after being severely ill almost 7 years. Some of the problems in past groups I was a part of included that just because we are all sick does not mean have anything else in common; definitions of the illness and diagnosis is poor so many people in the same group will often all clearly have very different diseases (and different ways of understanding and attempting to treat these diseases); and quite frankly I've never gotten too close to most in the patient community because so many are (understandably) so miserable that it is hard to want to talk to them for any length of time more than necessary. I do hate being sick, but I don't hate the whole world and everyone in it just because I've had a rough hand dealt me in life.
That's a delicate thing to talk about, because I get that people who are sick for 20 or 30 years are really traumatized. But as a younger sick person, I don't really like to spend what little energy I have talking to people double my age who do nothing but lash out at me and bring me down, insulting me for being sick fewer years than them. I'm sure many of us get how that can be - this is an extremely isolating illness and we each have such an individual journey. We are the experts on our own bodies, and experience does teach us something. But too much experience in being ill can also just force us to chase our own tail in circles of suffering and bitterness, which makes it hard for others to get close. And I have met people who are older and have been ill for a long time who are still very friendly people, so I don't mean this is an age thing. I'm just much younger than most I know with this disease, and when they are unfriendly on top of it that makes me feel even more alone.
Anyway, sorry this is long for those who have trouble reading so much. I've been looking for something like this for years, and feel a lot about he possibility arising again. Barbc56 raises good points, and we do all need to be careful - not all of us can think through those concerns so I appreciate her detailing them.
Some Additional Concerns:
*I would have run a group like this myself, but I am too ill. Horizon, if you are running this yourself, I hope you realize what a challenge it can be. You would need to do the work of moderator, so we have a clear end and beginning, and help people to figure out who speaks when. We might need talking points to focus on, and a strong hand is needed sometimes when a particularly aggressive person starts monopolizing the discussion, or pushing their beliefs.
*I myself have concerns about being able to phone in at 8PM EST, which is a time when I need to start winding down and taking sleep meds. For me an hour earlier would be much better, but I get that people in earlier time zones might then have an issue.
*I also don't get how this works - who is paying for the system that allows this, and who is the one who has access to that system so they can then see our phone numbers? The same way whoever owns the server for this site can see technically enough info about who types in here that they could identify us somewhat (not that they want to), phone numbers don't just evaporate into thin air. So who is the one who has access to that main number's records?
*Also, to be clear, I have no intention of participating in any group that views M.E. as a psychological illness that can be cured or even effectively treated with behavioral therapy or talking.
*What if more than 100 people end up phoning in, since there seems to be no limit on who can participate? How will this be managed? Set up multiple times for different groups to call in? Or just have most people listen in instead of talk? (sometimes that's what I wanted to do, when I was too sick to talk or think, but wanted to be able to zone in and out of listening to other people who were also sick so at least I didn't feel so alone)
Sorry, I'm rambling... my brain is a bit crazy today! Anyway, hopefully some of my comments can be useful as people contemplate participating in, or creating, these types of things.