The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Very Sad

Discussion in 'General ME/CFS Discussion' started by Snowdrop, Oct 9, 2017.

  1. Snowdrop

    Snowdrop Rebel without a biscuit

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    I don't know where even to begin. Phoenix Rising has been my home for 5 years now. It has been a life raft for me.

    I really never imagined it would come to this. My heart aches. It doesn't matter who's side anyone took or who's fault it all might or might not be -- it should never have devolved like this. With not a word as to why.

    Who wins in a scenario like this? To what purpose? I have no answers.

    All I saw was PR getting bigger and stronger and better.

    I am just terribly sad.
     
  2. Firefly_

    Firefly_ Senior Member

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    Me too.
     
    Mel9, MEMum, Invisible Woman and 23 others like this.
  3. Esther12

    Esther12 Senior Member

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    It's getting harder and harder to explain away all this as mere incompetence. What on Earth is going on here? It's bewildering.

    This drama has led to some real lost opportunities with SMILE, Crawley and the Lightning Process. So much time and effort has been wasted, from people who have so little spare time and effort. It's amazing that Gary and Janet could still fail to realise how wrong they have got this, or the harm that they are doing to advocacy efforts at a really vital juncture. So many years of work had gone into getting us to this point, but it's easy to see how things could slip backwards if we do not make the most of it.
     
    Sea, MEMum, Invisible Woman and 26 others like this.
  4. snowathlete

    snowathlete

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    I am deeply saddened. PR used to be a place where I could like almost everyone, even those I disagreed with, and who disagreed with me. Lately, if you say something somewhat doesn't like they hate you for it. It's completely stupid. Now, I don't feel secure in the same way as before. It feels to me like people are happy to watch it all burn so long as they can say they won...as if "winning" is worth anything in this scenario. Members, and PR as a sanctuary are what have borne the brunt of all this.
     
    MEMum, trails, Hilary and 26 others like this.
  5. Old Bones

    Old Bones Senior Member

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    I, too, am feeling devastated at the potential loss of Phoenix Rising as a valued haven for those who are bedbound, homebound, or invisible due to ME.

    My participation on two other internet forums was unsatisfactory, and short-lived. I abandoned the first one when I could no longer tolerate the "wild west" moderation, where trolls and others with inappropriate personal agendas set the tone. And, I was unceremoniously banned with no warning from the second (a health forum) for posting exactly the way I have here. These experiences demonstrated the value of good governance, and balanced moderation -- something many of us have come to take for granted here.

    I recall encountering Phoenix Rising several times in its early years, and to be honest, both the content and tone of many of the posts were not to my liking. At some point, even before registering as a member, I realized the forum had changed. Based on what I've learned during the past month, I now realize both @Mark and @Kina were largely responsible for the improvements.

    I'm not quite ready to "pull the plug", like several valued members have done already today. Nevertheless, I need to feel safe here in order to stay -- something I haven't during this recent contentious period.
     
    Last edited: Oct 9, 2017
    Jan, Sea, Orla and 30 others like this.
  6. Woolie

    Woolie Senior Member

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    I do hope people share their contact details with other members they trust before pulling the plug. So we can all stay in touch.
     
    Jan, Sea, Binkie4 and 23 others like this.
  7. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

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    Fare Well @Snowdrop, our eternal hope of spring.

    Yes, unfortunately.
     
    Hutan, mango, Invisible Woman and 9 others like this.
  8. Woolie

    Woolie Senior Member

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    Who has pulled the plug already?
     
    MEMum and Daisymay like this.
  9. AndyPR

    AndyPR Senior Member

    @TiredSam and @trishrhymes I believe, but I'm only just catching up on 12 hours worth of threads and posts, so there may be more.
     
  10. IreneF

    IreneF Senior Member

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    San Francisco
  11. Skippa

    Skippa Anti-BS

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  12. IreneF

    IreneF Senior Member

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    San Francisco
    Hey! You're here!
     
  13. Daisymay

    Daisymay Senior Member

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    I've not been able to be on line so much recently, just dipping in and out and seem to have totally missed what on earth has been going on.

    This is really shocking to see PR friends leaving and talk of PR folding.
     
    Jan, MEMum, Starlight and 9 others like this.
  14. suseq

    suseq

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    Agree @Daisymay. I am so sad, disappointed and bewildered that such an incredible resource of viable information, advocacy and support is seemingly imploding at a time when so many positive efforts and outcomes are happening.

    Trust, integrity and safe security has to be fundamental in any thriving community, and especially in one representing an illness which has been so grossly mistreated and misrepresented for far too long.

    I sincerely hope PR will live up to its namesake and fundamental purpose.

    With kindest regards to all.
     
    echobravo, Jan, MEMum and 12 others like this.
  15. Daisymay

    Daisymay Senior Member

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    Absolutely agree!

    Gentle cyber hugs to all x
     
  16. MEMum

    MEMum Senior Member

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    The UK BPS brigade are the only ones who will benefit from the fracturing of this forum.
     
  17. invisiblejungle

    invisiblejungle Senior Member

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    Can someone explain what this thread is addressing? What happened? Thanks.
     
    zzz likes this.

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