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Medical forum making fun of ME/CFS patients

Discussion in 'Action Alerts and Advocacy' started by Rrrr, May 10, 2012.

  1. free at last

    free at last Senior Member

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    I got banned from there within 30 mins of posting. There are a few openly abusive posters there. the worst might well be the forum admin. Who openly makes fun of patients telling jokes about CFS and patients dieing. I am amazed, this cant be reported to someone. Either the medical establishment. or the forum company who runs it. If anyone knows, if this is possible plz suggest ideas. I have a particular distaste for this lot of posters. Its just not acceptable. I belive this should be brought to the attention of higher powers. Who i have no idea. But really behaving like this on a open net forum. must in some way contadict there medical oath. If we could find there identity. they should be reported to the hospitals they work at. there email address could be a start. If they get away with this. Then really i just give up. Its disgusting
    svetoslav80 likes this.
  2. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I totally agree, we were just saying this this afternoon, i've also tried to leave a message with greg and linda (one of the people's video's they were making fun of) i think on page 3 of their thread but couldn't leave a message on you tube without them adding me as a contact first, so haven't been able to do it yet. They may know already but if not, they have a right to know. If they happen to be members of this forum maybe they're already aware of it.
    Something should be done about this, if they were joking about any other illness and people dying they would be hung drawn and quartered so its only right that the same should be done in this instance.
    I have no idea how to go about reporting websites and to who; but something needs to be done, they need to be made accountable and they need to be named and shamed, one of them in particular.
  3. Esther12

    Esther12 Senior Member

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    Lots of illnesses, races, disabilities and experiences are mocked on the internet. Pointing out the hilarity of a woman being raped is the internet age's edgy alternative to wit. It's pathetic, sad, and empty, but it's not something which people are normal hung drawn and quartered for.

    I don't think that this is deserving of anyone's time and energy. It's just stupid people saying stupid things, and making fun of aspects of life they know nothing about.
    Liz-Melbourne and WillowJ like this.
  4. hixxy

    hixxy Woof woof

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    I say stop giving this forum any attention and save your energy for more important battles. We have enough on our plates as it is.
    CJB, Sean, Jemal and 3 others like this.
  5. free at last

    free at last Senior Member

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    Sorry Esther completly dissagree.If police officers were being openly racist on the net. They would be held accountable. this is no different, they are in responsible jobs. Its a conflict of interest. With behaviour like theres. How do we even know they wouldnt abuse there position with vulnerable patients at work. It sounds like they could even see that as a joke. how do we know ?
    Wildcat and ukxmrv like this.
  6. Esther12

    Esther12 Senior Member

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    It depends upon whether you're talking about police officers on an anonymous forum, or police officers on their facebook page. There were certainly people purporting to be police officers on stormfront.
  7. Carrigon

    Carrigon Senior Member

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    I know Greg and Linda and they do know about this. I know how much Linda suffers and for anyone to dare make fun of that is just beyond disgusting.

    I don't know where the mentality comes from, it's like the modern day bullies. The ones who bully teens until they kill themselves, and they still don't stop even after the teen is dead. I've seen them still make fun on forums and social networking. They are only sorry the teen still isn't around to continue the torture. It's just unreal.
    Wildcat and Min like this.
  8. free at last

    free at last Senior Member

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    It seems some posters from the foul mouthed forum are, looking here for info then reporting it back to the lets make jokes out of the sick forum..I cant belive a poster by the name of MOJO RN actually said this.

    Who knew these delicate flowers could be so hateful and mean... oh wait, that's supposed to be us. Wait, who are the victims here, again? I'm lost.
    End of mojos message

    Hold on lets back track a little here, DELICATE FLOWERS WHO CAN BE SO HATEFUL.
    Omg talk about hyprocrites.
    After pouring my heart out. Telling these so called nurses. How i was nearly destroyed by this apparently non existent, somatic sympathy seeking. avoiding work illness.

    Mentioning on there forum,me writing a letter to my children who i loved so much, so my partner could give it to them when they got older,incase i died. There came a post shortly after from there Admin. Crass-poolination (mispelt that but actually seems about right )
    who then said this


    from crass-pollination
    Asked a couple of people with CFS to help me lift some bags of compost and one of them died thinking about it. That's when I knew to come check the forum for crayzees. It's an omen.
    End of message

    So there you have it apparently we are the ones who are hateful. About as hypocritical as one could get. I never realized some nurses could be so hypocritical. But heres the proof right here.

    Im absolutely delighted. That my call to report these so called profesionals. Has annoyed MOJO RN. Maybe she now feels a little like i did after pouring my heart out to these people, Only to get that sick joke shortly after, by the big
    man himself Crass-pollination.
    Who also i might add. said this when i was banned for defending myself


    I'm in the mood to ban some people. All Is Not What It Seems is my first victim. Who wants a piece?
    end of message

    Who wants a piece ? Damm this person seems a little power crazy if you ask me.
    they should all be reported. clearly they should. There is no reasoning with them, lots tried. only to get more abuse. like me.

    .
  9. madietodd

    madietodd Senior Member

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    There are unkind people everywhere. When they congregate, it just makes it that much easier to avoid them.

    We're not going to teach them, or change them, or 'wake them up.' They're happy acting this way, and they've found friends at their own level.

    I'm hanging with you guys, and completely ignoring them.
    CJB and Googsta like this.
  10. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Their mentality is frightening to say the least, and the way they turn everything around and twist things to make themselves look the 'victims' is probably the trait of a psychotic. If they actually do really feel like the victims just because the people they are bullying decide to stand up for themselves (shock horror!) then they're more mentally screwed up than I previously thought.
    I haven't been back to their forum nor do I have any intention of doing so but if I didn't know better, I'd say they were all inpatients of a psychiatric ward posing as nurses; as their way of thinking seems very strange to me. I know 5 year olds who are more mature. They must be really miserable with their lives and think really little of themselves if their only way of boosting their ego's is to pick on people they view as helpless and beneath them to get them through the day. I feel really sorry for them and I really do mean that. Least they're all herded up in one place where they belong.
    CJB, Min and ukxmrv like this.
  11. SilverbladeTE

    SilverbladeTE Senior Member

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    Sorry to break it to folk who've had a sheltered, nice life, but um...that's sucmbags for ya!
    Me thinks it goes waaaaaaay beyond the mad horseplay to relieve frustrations etc.
    Can't educate 'em if such, all they are in such eventuality, is wastes of toilet roll, for they are one with the pooplings! :alien:
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    kalmer is a bitch too!!
  13. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Its just as bad for those of us who haven't lead sheltered lives as all it does is remind us of the ghosts of sh*t heads past. Thankfully being adults an all, we can chose not to engage with pooplings which is what I normally do. My bad for clicking on that link lol. Hail to all pooplings! may your toilet roll be scratchy, and your ars*holes be forever itchy :confused:
  14. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    LOL, death by "ring sting" :p

    VINDALOO 4 U!! :devil:

  15. free at last

    free at last Senior Member

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    Youve summed them up perfectly. They really do twist things to make it look like they are the victims. And yes they really are in need of some kind of help themselves, for beliveing they are the victims just because some decide to stand up against them. I stood up for myself well enough. couldnt stand someone being as powerful as them. so i got a piece lol from the scary god crass poolination. might just ignore them now. but i was shocked by them. shouldnt let my faith in humanity get shaken. for every twisted soul. theres a beautiful one. just none of the beautiful ones are over there. there hard luck. really we get portrayed as angry.well i think they are about to explode. its unforgivable. we decide to stand up for ourselves
    heapsreal likes this.
  16. Esther12

    Esther12 Senior Member

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    It's amusing to have them complaining about the victimology of patients victimising them... but lets not slip in to victimhood over it... that could cause a temporal loop that would suck in all of the compassion humanity ever had.

    Personally, I don't like people talking about others being psychotic or needing mental help as part of a debate or insult. People on that forum were doing it unfairly to those with fibromyalgia, and it's just a cheap way of delegitimising others. It's certainly less bad to do this sort of thing about particular individuals, rather than condemning all nurses, or all people with a certain diagnosis.

    I don't think that there's anything terribly surprising about nurses behaving in such a thoughtless, stupid, and prejudiced manner - you get arseholes in every profession or group of people. It just shows the need for effective oversight and regulation, which should (although is not) be an uncontroversial position.
    CJB, Sean, Valentijn and 1 other person like this.
  17. Min

    Min Senior Member

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    What is the regulating body for US nurses?

    I really shudder to think how such charming, caring and dedicated professionals would behave if 'nursing' one of the 10% of all M.E. patients who are children (some of them toddlers).
    Wildcat likes this.
  18. SOC

    SOC Moderator and Senior Member

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    lol! Nice one, Esther! :thumbsup:
    WillowJ likes this.
  19. SOC

    SOC Moderator and Senior Member

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    Do we know they are US nurses? Nurses trained and working within the UK NHS are probably taught that attitude about ME/CFS throughout their professional lives. Not the lack of compassion, of course, that's all their own. Still it's easy to see how the weaker in character could develop the attitudes we see there if such attitudes were continuously encouraged by the authorities in their profession.

    There's an elephant in the room that we ME/CFS patients choose not to think about or discuss, I suspect. Because our symptoms take some effort to test for and our symptoms are easy to fake in the short-term, and because the definitions of our illness used by our medical authorities are so bad that they incorporate non-PWME into the diagnosis, nurses, especially emergency room nurses probably do see a lot of "ME/CFS" patients who are no such thing. Such patients may very well be the kind of people those nurses are talking about. They may be addicts trying to get pain meds illegitimately or they may be people with some types of mental illness seeking attention. In truth, the vast majority of us avoid the ER and the hospital as much as possible and don't give our diagnosis if we do have to go there, so they probably don't actually see many true ME/CFS patients.

    We all know the type of person that generalizes to the point of absurdity -- a black person was rude to me on the bus so all black people are rude. My last girlfriend was just after my money, so all women are gold diggers. A person came in claiming to have ME/CFS was just a neurotic addict looking for drugs and sympathy, so all ME/CFS patients are neurotic addicts. It's ridiculous, but there's people who do it. That's no surprise to any of us. So the fact that a collection of them have found each other on the internet is no surprise either.

    None of this excuses their hatefulness, lack of compassion, unwillingness to learn the scientific facts about this illness, or willingness to paint everyone with our diagnosis with the same brush.

    Let's face it, we should be warned up front about the nature of this group by the name CRASS-pollination. They mean to be crass. Most of us outgrew that in middle school, but some people retain their obnoxious juvenile style all their lives. We can behave like adults, though, and not engage with them. I don't try to reason with toddlers in a tantrum, and similarly, I don't try to reason with adults in the same mental state.

    Let's just let it go. They're a little bunch of nobodies in a dark, lost corner of the internet universe. They aren't going to make a major impact on our lives. This topic will get boring if we don't engage with them and they'll move on to some other group to abuse. And still no one will really care what they think. They're ignorant nasty nobodies that can't even get their work colleagues to listen to them so they have to bitch and whine with strangers on the internet. They're nothing. If you run into one of them in the ER, you can look them in the eye and tell them what major a-holes they are, but no sense in crossing that bridge until you come to it.
    CJB, Googsta and Snow Leopard like this.
  20. free at last

    free at last Senior Member

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    I agree its feeding them. Just dont like people getting away with verbal abuse Especially sick patients. Its really funny how they try to turn the tables. They act like hateful children. And when we respond back in ways they dont like. its like a, aha got you moment. See your having a go at us lol.

    The point they dont seem to get. Is THEY STARTED IT damm. But then condem us when attacked back, thats clear to all here, as its becoming a theme in the writings on here. Talk about double standards

    A example is, after taking my voice away by banning me. ( silly really because anything i say here is going right back there ) Whos been banned lol.

    I started leaving little annoying comments on my avatar name. Because I can still say things on that. But of course I was blasted for doing that. like im the bad guy. Even though they started this bad feeling and abuse.Then took my voice away.

    So they expect people to not react. silently just go away. Sorry not me. After I pretty much proved how hypocritical they are with my comments about what the poster Mojo said. Her only meaningful response ( I know why, she knows I was right ) Was to say she was only annoyed about my punctuation.

    Wow, no mention that I was wrong about her and others being hypocrits after CRASS poo lination made that sick CFS joke, after I mentioned my fear of not seeing my children grow up.

    She somehow lost her argument on that one.

    Then changed the playing feilds. ( A constant tactic it seems ) Attacking my writing skills lol.

    News to her and all of them. I couldnt give two hoots about my lack of writing skill. What I have to say is worth a thousand of there perfectly written, hypocritical, and twisted writings.

    I will let it drop soon. because I know is all a bit too negative, for everyone. But i've had fun defending myself, if they really cant see what hypocrits they are. Then they are more disturbed than it appears. And boy they appear pretty disturbed.

    When I see this message appear on there forum. I'm going to laugh. Because I'm going to be thinking. Whos banned MRs crass poo lination ? Me ? aha

    LOOK HERE I AM ON YOUR FORUM lol

    Thanks everyone there for allowing me my voice back he he. Cheers

    So am I banned or not ? put my message on there, and it appears I am still alive and kicking. Dont put it there. And I win lol.

    Hey I think I've won this little argument either way it seems. Catch 22. Now I'm really pissing myself laughing.

    A Message to crass poo. I did'nt die, I recovered, and saw my children grow. so up your creek ( or is that crack ? poo ) Leave sick patients alone. you've been made to look silly now. Really you have. My partners laughing as I type.
    Sorry everyone on this forum. for tolerating this here. I know I'm starting to be as bad as them. But sometimes. you've just got to stand up against the twisted in the world. Hey I have a voice. Even though someone tried to take it away from me.
    Whatever abuse comes next, think I will ignore it, because as mentioned by others. DO NOT FEED THE TROLLS

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