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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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What Do You Want From Your Local M.E., C.F.S. Group?

Discussion in 'General ME/CFS Discussion' started by golden, Jun 20, 2013.

  1. golden

    golden Senior Member

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    I think the venue is crucial. Easy Access.

    No Smoking. Perhaps commonplace these days ...but M.E. people need more ...

    Comfortable, supportive environment - low noise level, chemical free , flourescent light free,

    If refreshments are offered to the group this should include caffiene free and chemical free alternatives.

    I think diet too is a difficult scenario . Accounting for gluten Free, dairy free , sugar free , individual allergies , it needs to be thought about sensitively doesn't it.

    I would have appreciated learning about the hummingbird foundation, getting help with benefits and possibly advocates through the process , and having help re: tests.

    All just very practical stuff really.

    I was wondering about peoples experiences and what they would like?
  2. lnester7

    lnester7 Seven

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    Just having the group to exist for me would be nice.
    MeSci, beaker, caledonia and 8 others like this.
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I think the possibility of simply getting together in own cities, in patients' homes, when possible, can work. Some of us are trying that. Like herding cats though as so few can predict when they will be able to come.

    Sushi
    beaker, Valentijn, WillowJ and 2 others like this.
  4. golden

    golden Senior Member

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    Yes having one exist is half the battle !...

    Then having them benefit M.E. people ... is the other half :)


    I think because there will be a mix of illness - this leads to lack of understanding .


    Some people say CBT is helping them, or positive thinking and so on - it can be implied these are the things needed to get well !


    The 25% ME is good as it must have similar levels of disability in it . House /bed bound .
    taniaaust1, redrachel76 and Valentijn like this.
  5. golden

    golden Senior Member

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    LOL yes, I often think I have gone ferral . :)

    Inability to regularly attend anything frustrates me.
    Valentijn likes this.
  6. SOC

    SOC Moderator and Senior Member

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    What local ME/CFS group? ;)
  7. Allyson

    Allyson *****

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    Yes i like the idea in principal but attending would be hard and the venue would need to be right..

    I am finding online support useful and it would also be an effective way to militate for change with this new opportunity - something we can most of us access.

    A
    golden likes this.
  8. ukxmrv

    ukxmrv Senior Member

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    The right time is important for me. There have been some local meetups but for some reason they have been in the morning. It puts me off as I can't function in the morning and it makes me suspicious on what all these "ok in the morning" people are.

    Public transport or easy taxi affordable, flat access is important.

    I like meetings where there is a speaker and I'll get something from it - but only if the speaker is a real asset and not someone trying to sell something.

    We won't get advocacy or practical help unless there is a paid worker and that means that the group needs to have applied for funding and got some sort of grant. There are local groups who manage to get funding for outreach workers and even nurses. It's important if possible to include housebound people. I know housebound people who run local groups. Telephone trees in the old days or email now. Newsletters and things like that.

    I'd also like to go to meetings with other long term people or a mix as it is very hard if everyone is new and wants information. People who turn up that don't meet whatever is the purpose of the group need to be firmly shown the door. We've had the snake oil sellers turn up also "evangelical" patients of various sorts.

    Set up local groups in the past and found it a rewarding thing to do. Made some long term friends and useful contacts that way.
    helen1, beaker, redrachel76 and 4 others like this.
  9. rosie26

    rosie26 moderate ME

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    Inester7 - Your comment is the reason I have decided to start a group meeting up where I live, have had one call so far.
    I am no leader or one to do this kind of thing, so really it will be just a group where we can talk and encourage each other. It really helps to be able to talk with fellow sufferers, as they really understand the depths this illness takes us too.

    This is a good topic, am interested in all the comments.
    beaker, Little Bluestem and WillowJ like this.
  10. WillowJ

    WillowJ Senior Member

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    because i'm mostly housebound, having online meetingspace (a facebook group, organized chats whether on G+ or whatever else) is important to me.
    MeSci, beaker, Firestormm and 3 others like this.
  11. rosie26

    rosie26 moderate ME

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    I agree WillowJ , I wish I had known of this site 11 years ago, what a huge comfort it would have been to me, and all the agonizing questions and worries I have had over those years, I would have been able to ask them here.
    MeSci, golden and WillowJ like this.
  12. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    When I lived in another city I used to organize a support group that met once a month. We usually had a speaker and a local autonomic specialist was our sponsor and came when he could. But...it became too much work--mailing lists, finding speakers, finding a good venue etc. and we gradually sputtered out as so few could ever manage to get there for a given meeting...and so few were well enough to help with the organizing.

    Where I am now there is a small pack, flock, (coven?) of us who have met in two's and now we are stretching it to four's. We don't need a speaker--we all have a lot to say!

    Sushi
    MeSci, beaker, golden and 5 others like this.
  13. rosie26

    rosie26 moderate ME

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    hahaha Sushi, I can imagine they all have a lot to say ! I was told that you can sometimes get a real talker who won't stop talking ! ha ha. and can shut others out. So be interesting to see what people come to the group I'm starting, when up and running. It will be a real learning curve for me, may not be very good at it, I guess just have to play it by ear. May even be too much for me.
    MeSci likes this.
  14. redrachel76

    redrachel76 Senior Member

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    I had 2 problems with the only support group I ever went to:

    1.) No one knew the difference between fibromyalgia and CFS/ME and how they react differently to exercise. (Including the group leader.)

    2) I was the only severe patient in a group of lightly effected.

    I can cope with Problem 2 if the people are nice or just polite.
    But Problem no. 1 can be solved easily and it is so frustrating when it isn't.

    The last FMS person I spoke with said:
    "Well mild exercise didn't help me at first but I tried many different types of exercise till I found what helped. -Kick boxing, because it got my muscles moving so the pain and weakness improved."
    Now try answering someone like that when even their own doctors and the support group leader don't know the difference between FMS and ME.

    The group leader or people there knowing the difference between primary/secondary FMS and CFS would be a biggie for me if I had a CFS/ME support group.

    I also agree that I would never attend a support group that met in mornings.
  15. Firestormm

    Firestormm Senior Member

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    We have 7 ME Community Support Groups across Cornwall all run independently and by patients or by others. As ever though it's partly about reaching those who can't get out of their houses - especially so in a rural community - and trying to remain in contact with those who you haven't seen for a while who might be unable to get out.

    There's a charity MS centre - modern one - I used to visit and they had a mini-bus to collect folk who couldn't travel; but that has trouble of it's own too and is still limited in what/who it can reach.

    The community groups for ME I believe set their own agenda's and pace. They are very popular by all accounts. I'm not a great one for 'socialising' these days - believe it or not - in that I don't especially miss it. And when I do socialise I find it incredibly draining. So I don't suppose such gatherings are helpful to everyone or all of the time.

    I think knowing they are there and that they will permit people to talk and say what they feel is important is key. Ideally, you could design a comfortable surrounding; but practically this is impossible.

    Often it's church halls or medical centres although people can bring their own comforts. It's more I have found about human-contact than anything.

    A chance to interact and natter or even to be seen. I don't think humans can survive without social interaction on some level. But thank the gods for the internet. Though even that scared the crap out of me when I first returned - or return even now after a bad bout of illness: it can be hard to break into.

    Forums - especially commenting on a forum - isn't for everyone and not all of the time. It's hard. Even reading the stuff that gets posted. But it is there for when people are feeling up to it. And thank the gods for that. And for the ease of use that this particular forum allows. Helps keep my mental faculties functioning. At least that's what I tell myself.
    MeSci and golden like this.
  16. Misfit Toy

    Misfit Toy Senior Member

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    Every group I have ever gone to for CFS always has soda on the table and potato chips and pretzels. We are trying to get better, right? So, I think groups should promote healthy eating and living and get rid of soda and any other unhealthy thing going on.

    I also agree with redrachel76. Fibro and CFS are not the same disease. I have both, but many have just fibro and have no clue what CFS is. I became so sick of explaining the difference and what it is that I deal with. Fibro people don't even know what CFS is, which is so weird to me.

    And yes, no meeting in mornings.

    A lot of people in my last support group had had strokes, heart attacks, Aspergers. I sometimes wondered to myself, do these people really have CFS? And, the one woman was like 97. Wouldn't that be a reason to be tired? It was a strange mix and sometimes the people were weird. Sorry to say, but there were many that were too sick with other things or seemed like they just needed a support group of any kind.

    The last group that I started; no one wanted to meet in a public place. They wanted to meet in someone's home. Of course no one wanted to do it, so I had to do it and it sucked. I would never do it again. Starting a group is a ton of work and more than half the people can not come, or don't come in the long run and don't let you know that they are not coming.
    redrachel76 and golden like this.
  17. Firestormm

    Firestormm Senior Member

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    I started a support group... then forgot to tell anyone! My attempt at a joke :)
    Little Bluestem likes this.
  18. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Another thought: if you know of people in your area who are PR members, you can use group conversations to keep in touch.

    How do you find PR people in your area? If you don't mind the "going public" aspect you could put your city under your avatar and other locals may notice. :hug:

    Sushi
    Firestormm likes this.
  19. SOC

    SOC Moderator and Senior Member

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    You and I would never be members of the same support group, then. ;) Until the past couple of weeks, I've been one of those "ok in the morning people". I have to hydrate heavily before bed and stay sitting in bed about 45 mins in the morning (while hydrating more) before I'm okay, but once I've got my blood volume, BP, and HR stabilized, I was good to go for a few hours. Afternoon was always the killer for me, and the later in the afternoon, the worse it got.

    As I started the get better, the first work I did -- even before housework -- was tutoring between 9:00 and 12:00. Late enough that even if I woke feeling crummy, I could get equilibrated enough to sit at a table and tutor. By early afternoon, though, I was completely shot and had to go back to bed for 1-3 hours, depending on how well I was doing that day.
  20. rosie26

    rosie26 moderate ME

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    I find afternoons the worst for me too. I really need to lay down and rest. I find the mornings are good for going out and doing what I have to do, appts, groceries, etc. I guess after laying down in bed all night I have a bit of energy to go out and do these things. But when I am out, my ME always tells me when it's time to get going home again and sometimes it hits hard when out and I have to hurry home as quickly as possible to lay down.

    like all the interesting comments :)
    Firestormm likes this.

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