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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Goodbye

Discussion in 'Lifestyle Management' started by Nielk, Nov 12, 2011.

  1. Nielk

    Nielk

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    Queens, NY
    It is with a heavy heart that I feel I need to say goodbye to my friend here at PR.
    For a long time it has been a place of refuge for me.
    A place where I can get support, learn things and in addition hopefully have helped some people alleviate some of the burdens.
    From light hearted thread (Limerick your friends, the last word) to more serious discussions like Suffering and spirituality. I have enjoyed all of it!
    Unfortunately there are some forces here that are pure evil. Their whole purpose on these forums is to disturb, put down and repeat their delusive campaign.
    I am at a point where I have reached a limit.
    This has affected my health. I don't have x-tra chips in my envelope to deal with this any longer.
    I have become very sick over this.
    I am told that there are not enough moderator working on this forum.
    Cort, has started this forum and it;s his responsibility to make sure that it's a safe place for patients to
    communicate and not feel like they are going to be pounced on.
    I have contacted Cort, twice in the past couple of weeks but, have not received any replies.
    It seems like the only time I do get a reply is when I donate to the forum.
    Jill Mclaughlin, should have been kicked out a long time ago.
    It is too toxic for me to be on the same forum with her.
    Since no action has been taken, I am going to have to say goodbye to my firends here.
    I will miss all of you.
    My best,
    Gabby

    ps. I guess I'm having the last word after all.
     
  2. madietodd

    madietodd Senior Member

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    Hey, sweetie, I'm sorry. I hope hope hope that you feel better soon, that you decide to hang out with us again, that things change for the better. I just avoid all of the political and most of the medical threads. I hang out in chat, I check new posts from people I trust, and I get help and support when I have questions. I've found great friends here, and lots of useful information. And I've figured out how to mostly avoid the angry people.

    I understand how you could feel overwhelmed, and I'm sad that it is so. Please keep reading the silly threads for the laughs they provide, risk free!

    I miss you already.

    Madie xox
     
    Sing and ggingues like this.
  3. WillowJ

    WillowJ Senior Member

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    dear Neilk,

    I'm sorry, and I wish I could do something. I hope your health recovers. And that you come back once they get a handle on this.

    hugs,
    willowj
     
    Sing and ggingues like this.
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Oh, please don't leave! I value and enjoy your posts so much.
    But also don't let your health get affected.

    I guess I do like Madie, read threads very selectively and as soon as I come across an argument, stop reading and go to a more uplifting or interesting thread.

    A value too much people like you to back away entirely. Who else understand what we live with but us? Yes, I hate to avoid certain people's posts, but I do...cause, like you, I don't need to get upset by a forum--life is too precious and too difficult already.

    So, maybe take a break but we will miss you terribly if you leave.

    Hugs,
    Sushi

    P.S. My guess is that Cort also has to protect his health. When he started this forum (I was an early member) there were few members and he could take an active hand in moderating (though there wasn't much need for it then). Now he seems to be prioritizing to try to write articles, interview people and get information to us and hope that the few moderators can carry the burden. Obviously they can't cause they are sick too, so we have to put up with (or ignore) some stuff that shouldn't -- in an ideal forum (which doesn't exist)--happen.
     
    Sing, WillowJ and ggingues like this.
  5. leela

    leela Slow But Hopeful

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    Oh Nielk, it can't be, you must stay!
    From the meanies just keep far away!
    There is always "Ignore"
    (a function I've used for sure)
    I do hope you'll still be here to play

    You're so smart, fun, and loving, creative
    and silly--it would really be great if
    you'd focus on us
    and avoid all the fuss
    We can always stand in as your bailiff.

    *****
    Don't go, Nielk, Who Rhymes With Milk.
    We love you.
    :hug:
     
    Sing, shannah, WillowJ and 1 other person like this.
  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Nielk, maybe just lurk in the background until everything settles and then make a return to PR. It would be a shame for you to leave as you had some informative posts which have helped many of us. Many of us feel the same way about evil forces but we cant let them beat us as this was once a really good forum which i think is having a hiccup at the moment. But u got to do what u got to do.

    cheers!!!
     
    ahimsa, Sing, WillowJ and 3 others like this.
  7. Kina

    Kina Moderation Team Lead

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    Nielk -- please don't leave, I really appreciate your posts and you are an asset to this community.

    If anything, take a break, regroup. If people are bothering you put them on ignore and then they disappear. Please reconsider. It would be so sad to lose you as a member.

    Sincerely, Kina.
     
    Sing, WillowJ and ggingues like this.
  8. jewel

    jewel Senior Member

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    Nielk-- I mostly read here, but rarely post... but know that I have always appreciated your insights. I wish you well, and hope to see you back. peace and blessings, J
     
    Sing, WillowJ and ggingues like this.
  9. anne_likes_red

    anne_likes_red Senior Member

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    I'm another who appreciates your posts NeilK.

    I hope you'll consider a return to posting in time - but look after YOU first.

    I haven't actually seen the threads that have been bothering people lately.
    I will say, there are certain posters here whose behaviour towards PWCs I find absolutely repugnant. I've just slapped them on ignore. Wellbeing is simply too precious to waste engaging with people like that. I could say a lot more but I won't cos this is YOUR thread.

    Come back soon? :)))))
     
    ahimsa, Sing, WillowJ and 1 other person like this.
  10. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I hope you do what is best for your health and that more attention is brought to what has bothered you.

    gg
     
    ixchelkali and ahimsa like this.
  11. snowathlete

    snowathlete

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    dear Neilk,

    Im gutted for you. Its so sad that the minority have effectively forced you out. I understand your frustration. I hope being away helps you recover, but remember that we who do care about you, are thinking of you, and will continue to do so. I dont blame Cort, he has this illness too and this is a big site to manage even without the forums, but i hope the current problems do improve, and that at some point you feel able to come back. I know we will all be pleased if and when that happens.

    My best wishes go with you.
     
    ixchelkali, Sing and WillowJ like this.
  12. Sasha

    Sasha Fine, thank you

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    Hi Nielk - I'm so sorry that this situation has upset you so much that you feel like leaving. It really is horrible to be on the receiving end of trolldom.

    But a lot of us here are asking for a firmer line on these people - permanent exclusion after the first offence after a previous warning, for example - and I hope that suggestion might be taken up and that things will quickly improve. I hope you'll come back once things are better.

    In the meantime, please take care of yourself!
     
    Sing likes this.
  13. Bob

    Bob

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    Hi Nielk,
    Have you tried the 'ignore' function?
    It might help if you are having issues with just one or two troublesome members.
    If you want to try it, then go to the member's profile page and, on the left-hand side, click on 'add to ignore list'.
    I've never used the 'ignore' function myself, because it seems like I am only getting access to a partial forum if I have to use an igore list, and so I feel like I might be missing out on things.
    But I wish I had used it at times.
    I've not been enjoying the forum much recently either, partly because of what seems like persistent harrassment from some non-patients, and so I've cut down my forum usage. It didn't seem like a supportive and nurturing forum for ME patients any more.
    It would be a shame if people were harrassed off the forum, so I hope the mods look into these complaints about persistent harrassment from some members.
    Bob
     
    Sing, WillowJ, leela and 2 others like this.
  14. Dreambirdie

    Dreambirdie work in progress

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    Oh no! Please don't go Nielk. You are one of my favorite people here.

    I know how you feel, and the kind of stress it's causing you, and so many others, to have to deal with the angry argumentative instigators. Like Madie, I have also learned how to bypass and avoid them. I hope you will consider sticking around and doing the same. The IGNORE LIST is a great tool as well.

    Please don't forget that there are kind and supportive people here too. Their goodness is worth hanging around for. Please consider staying.
     
    Sing and WillowJ like this.
  15. Sasha

    Sasha Fine, thank you

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    For anyone interested in the IGNORE function, it's in Settings. When you're logged in, hit the Settings tab (next to the Log Out tab), and in the list on the left, you'll find "Edit Ignore List". Click on that and you can type the name of the person you want to ignore into the box.
     
    ahimsa and Sing like this.
  16. snowathlete

    snowathlete

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    Thanks Sasha, i heard about this function, but couldnt find it.
    How does it work, does it hide posts from people you are ignoring?
     
  17. Sasha

    Sasha Fine, thank you

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    I think it must do - I've never used it myself, though (I might start soon!).
     
  18. Andrew

    Andrew Senior Member

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    The ignore feature hides the posts of the person you are ignoring, and replaced it with a message indicating that that person has a message there. I think you can click on that if you want to see the message.

    It takes some getting used to. But after awhile gets easier and easier to overlook these reminders of a hidden message.
     
  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Doh, sorry to see ya go :(

    Nil illegitimo carborundum ! ;)
     
    Nielk likes this.
  20. mellster

    mellster Marco

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    Please do not leave, maybe you can work on your "effectively ignoring unhealthy posts" skills an come out ahead with improved health through stress-reduction :) Also, since this the only thread you might be reading right now, you might want to try keeping up with the current pending medical cannabis legalization bill in New York which could be approved very soon (since you seem to be interested in it):
    http://medicalmarijuana.procon.org/sourcefiles/new-york-senate-bill-2774-duane.pdf
     
    Nielk and (deleted member) like this.

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