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ME/CFS Phone Support Group

Discussion in 'General ME/CFS Discussion' started by Horizon, Jul 6, 2016.

  1. Horizon

    Horizon Senior Member

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    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.
     
    Last edited: Jul 6, 2016
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  2. barbc56

    barbc56 Senior Member

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    Would this mean others would see you or is that just with Skype. Believe me, I would be doing everyone a great service by NOT showing my face, unwashed hair styled by sleep, my ratty but comfortable PJs.:rolleyes:

    I would have issues about privacy. I think for many here, that would be a big concern

    I can only speak for myself but I think I just feel more comfortable on a forum. However, I'd think it would be easy enough to find others to form a group.

    A lot would also depend on the format.

    Anyone ever participate in something like this? It's an interesting idea. Maybe not for everyone but intriguing nonetheless.

    Good luck!
     
    Last edited: Jul 6, 2016
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  3. Horizon

    Horizon Senior Member

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    It would be anonymous, no video just phone. That's the nice part, we can be in our beds and just chat about this condition.
     
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  4. barbc56

    barbc56 Senior Member

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    I like that part but would anyone have access to our phone numbers? I don't have the funds to buy a burner phone to disguise my REAL* identity. :D

    * Brittany Spears.
     
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  5. Horizon

    Horizon Senior Member

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    Nope. They just hear a voice on the other end but that's all. I've participated in chronic pain group calls but it's time for a chronic fatigue one.
     
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  6. barbc56

    barbc56 Senior Member

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    I've been thinking about this and I need to be honest with you as the more I think about your post the more uncomfortable I am feeling.

    This is your first post. We do not know you. Maybe a good start would be to introduce yourself. Your motives may be perfectly legit but I think it's important to give the members on PR as much reassurance as possible. It's be a slow process to build up trust but worth it if you are truely genuine.

    I hate to be paranoid but we are very protective of one another and don't want to see our friends taken advantage of. We have good reasons to be wary. There have been others who have tried to take advantage of us and a big red flag is that sometimes the first post dives into an issue, perhaps with an agends not readily apparent.

    Please understand that this may not be the case here but it would sure be nice to know a bit more about you before jumping on an idea like this.

    There is a thread for introducing yourself.

    Thanks.
     
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  7. Horizon

    Horizon Senior Member

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    I asked the administrator Kina for approval beforehand. I'm a CFS patient, nothing to gain. If you're not comfy, no worries, don't call in when we have a call.
     
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  8. Denise

    Denise Senior Member

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    @Horizon - welcome to PR.
    Interesting idea to have a telephone support group.

    I understand @barbc56's concerns about privacy and I imagine there are many other details that need to be ironed out/discussed before people sign on for the group.

    How long have you been sick?
    When were you diagnosed?
    How are you managing (treatment-wise, etc)?
    Where are you located?
    How did you find PR?
     
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  9. Horizon

    Horizon Senior Member

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    I've been sick for about 4 years. Diagnosed 2 years ago. I've tried a variety of treatments (LDN, stimulants, Cymbalta, Lyrica, tons of natural approaches, Gabapentin and a number of other prescription meds. My next journey will likely be Famvir. I've been following PR and other sites for months now but mainly in terms of the latest studies.

    Personally, I do better talking than typing due to sensory overload. I realize many are the opposite and prefer not talking but typing and the screen brightness can be hard on me.

    I am also mostly bedbound and lonely hence my desire to talk to others who understand this crazy illness and to discuss coping strategies and whatever else anyone feels like bringing up as long as it is all respectful.
     
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  10. Horizon

    Horizon Senior Member

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    I've updated the first post on this thread with the info for the conference call number etc.

    Looking forward to chatting with others on here and by phone on Saturday.
     
    barbc56 likes this.
  11. barbc56

    barbc56 Senior Member

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    Thank you! Maybe it would have helped saying this was approved by Kina but you're new here so that's understandable. It's a learning curve. It will be interesting to see how this turns outI Again, good luck!

    Edit. We crossed posts. I see you did this! Thanks!
     
    Horizon likes this.
  12. justy

    justy Donate Advocate Demonstrate

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    What a great idea! I would love to join in, but unfortunately am in the UK and the time difference maked it so late over here - well and truly asleep by midnight.

    Good luck with this project, I hope it goes well.
     
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  13. MEsupport8

    MEsupport8

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    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.
     
    Last edited: Jul 7, 2016
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  14. MEsupport8

    MEsupport8

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    One other note. I searched this number on the internet, and it is linked, among several other things, to a number of phone-in prayer circles, and homeschooling support. Now, prayer is not necessarily a bad thing. But I am not a Christian, nor will I ever become one. So I would not be comfortable participating in a group where ANY individual religion/belief system is discussed frequently (Christianity, Islam, Judaism, Hinduism, Ba'hai, Wiccanism, fervent atheism, etc. etc... doesn't matter what it is specifically). I have already left patient email groups because many of the members were evangelical Christians, and despite meaning well, their constant references to their churches, to their scriptures, and to Jesus made me uncomfortable and feel at the very least, that I had nothing in common with them. (And thus more alone.)

    Should this turn out to be a group devoted to "praying the illness away," or to converting people to a particular faith or a particular church/organization, I have no interest whatsoever. It's also linked to some business conference calls, though, so I'm not sure that that's really what this is...
     
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  15. Horizon

    Horizon Senior Member

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    The number is a general conference call number associated with freeconferencecall.com and hundreds of nonprofits and groups use them. Our access code is for our chat only and it is a free open forum support group only. People are welcome to share their journey. The calls don't have a religious, political or even treatment favor. Anyone is welcome to their thoughts and approach as long as its not pushed on others.

    The 8 pm slot is to try to accomodate those in other time zones but is flexible and can be changed. Your worry about hundreds joining the call would be a lovely problem to have im hoping we simply just get a decent group for weekly calls.

    What yahoo listserv did you see it on out of curiosity? I'm glad someone is sharing it but didn't know.
     
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  16. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    Looking forward to getting on the call and hearing what others have to say. I am struggling bad right now as I'm sure all of you are and I would love some input. Great idea.
     
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  17. Horizon

    Horizon Senior Member

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    I'm sorry you're struggling. I am too this disease is very hard physically and emotionally. I am really excited to chat with others who get it and maybe we can share advice on how to make the best of our new normal until scientists hopefully get a cure or effective treatment.
     
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  18. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    I don't have supporters except for my husband and 3 year old daughter who doesnt get it. So I am very happy that this is being done. I love that you called it our "new normal". So true. And sometimes very hard for me to come to understand. Looking forward to Saturday. Thank you so much for this great idea again.
     
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  19. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    Truly grateful for people like you
     
  20. Cheeza11

    Cheeza11 Living life with Laughter instead of Fear

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    Out of curiosity how old are you? As I am young and suffer from this illness and am told by my doctors that I am one of the young ones out there that has been battling this too and feel similar to how you feel. Since I'm probably going to be one that listens and tries to gain knowledge when phoning in on Saturday.?
     

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