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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. Sparrow

    Sparrow Senior Member

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    I think us all staying away is a good idea. In addition to all the other reasons, having gotten a glimpse into the mind of their moderator I really hate the idea of being responsible for giving her a cent of advertising revenue.
  2. August59

    August59 Daughters High School Graduation

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    Thank you Sparrow and whoever else proposed staing away. The biggest reason for me is that I don't want them migrating over here and lowering the standards of this forum. I have no problem with them having their opinions, but they are a long way from opinions over there and I hope it stays over there.
    Googsta likes this.
  3. Googsta

    Googsta Doing Well

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    I have benefitted personally from the suffering of some of these poor kids. My last Psychologist had a patient who was a little boy with ME/CFS, she was the most compassionate medic I have ever met.
  4. taniaaust1

    taniaaust1 Senior Member

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    Well the truth is ..some here are being hateful towards them.. so they have every right to now to say some of us hateful.

    (I thou certainly dont agree with the kinds of things they've said about ME/CFS and found some comments appalling but throwing around hate only feeds more hate and anger . .. my mum used to say.. two wrongs dont make a right and some have like "baited them" just cause obviously they just didnt understand our illness (they probably believe what they believed.. just cause how the medical profession often portrays our illnes). Some people autonomically do get their shackles up if baited.

    I posted my heart on that thread too under a different nic early in the piece, to nicely answer some questions which someone had asked on our illness .. no one there responsed badly to my post. .. i actually thought thou they poor taste jokes.. there was some seeking there to actually understand more... some thou threw crap there way so they threw even more crap back.
  5. maryb

    maryb iherb code TAK122

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    I briefly glanced at the site - my thoughts?
    Extremely limited, narrow minded, inarticulate, uneducated thick idiots.
    No offence to those on here who are in the nursing profession, but really is that the limit of their interactions?:(
    I was glad to get back here, to funny, clever, witty, informative, massively educated, compassionate people. That'll do for me, I may be sick but I'm very selective about who I hang around with:)
    peggy-sue likes this.
  6. globalpilot

    globalpilot Senior Member

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    I had a look through the site and I really don't think the ones poking fun have invested 1 second into researching CFS/ME. So one couldn't have an intelligent conversation with them. Best to stay out of it.

    I just spent 5 days in teh hospital for reasons other than CFS/ME but they knew I have it and I received no disrespect whatsoever. I was treated very, very well. I really think these people on the site are in the minority.
    Googsta likes this.
  7. CJB

    CJB Senior Member

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    How very well said!!!

    I just had a visit to the hospital this week for an out-patient procedure and had four nurses assigned to me. I know because they wrote their names (and one smiley face) on a "Thank You" card that was included in my take-home packet of info. They all knew I had CFS because my BP was extremely low when they first took it, so I explained, and they could not have been more supportive and kind.

    This is not the first illness in history to have been so utterly misunderstood and open to ridicule and misunderstanding. I'm glad these people have a place to vent their anger. They clearly are in the minority when it comes to their profession in my experience. And just because they say they are nurses doesn't mean they are.

    And PS, there has been at least one poster there (in support of CFS, I guess you would say) who always sounds a bit on the fringe anyway. It's always difficult when you're associated with someone like that because you may share a disease, maybe

    I was curious, but I think you identified it for what it is, madietodd.

    I know there are nurses like this who are treating some of you and all I can say is be heartened in knowing that it is not like this everywhere and things are changing. Very, very slowly, but they are changing.
    WillowJ and Googsta like this.
  8. Kina

    Kina Moderation Team Lead

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    Just wanted to add. These particular nurses describe how it's okay for them to vent in their own space because they are frustrated with aspects of their job. I had a few annoying patients in my life who I vented about in PRIVATE but to heap derision on a whole population of people -- there is no excuse for that. They label themselves as RN's on their forum; they are representing RN's as a group; this is definitely related to Professional Standards.

    It's better just to ignore them.

    If anybody wants this thread moved to a more private forum so they can't copy/paste our posts, please let me know either by PM or on this thread.

    Thanks.

    Kina.
  9. Molly

    Molly

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    Thanks to whomever picked up on this "nastyblogagram forum"! We wonder why we don't get anywhere with our health care......Now we know. What we do not know is if their prejudice and denial of our reality, is pure ignorance, personal bias, or part of mandated training by their Government's equivalent to our CDC or Sec. of Health.

    Perhaps these nurses are sounding off, because the numbers of severely ill ME patients are increasing so rapidly that managing our lifestyle from the outside in, is getting too much for them to deal with? Like ours, their Government is not going to listen to a patch of RN's who exemplify compassion, empathy, or support? Where is the coverup in all this, and why? As we all know, ANYBODY, in the medical field is prone to this tragedy! I am preserving their commentary in on a disk, so if it does disappear from their forum, I have documentation prepared for the day I start going to the Boards of Medical Professionals, to inquire of such beliefs in the medical community. They are unethical at the least, but they also representative of the blatant beliefs and conversations in the medical field across the world, that have kept us from rapid diagnosis, treatments and early interventions.

    It appears there is an infectious agent blocking our medical interventions. Until it becomes their issue to suffer through, they will mock, use dark humor to decompress and amuse themselves but will regret this when they or someone close to them becomes ill with ME. Bottom line, if it is the Governments attitude/policy, they will continue to treat ME Patients as we all have experienced, just to keep their jobs? The best we can do is use it to our advantage as we tag-team against the medical/political denial of ME.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I read the first page of posts and just felt too repulsed to continue. I am sure they do not represent most health care professionals; but of course their attitude is emblematic of the persecution we face. No use trying to inform them more than some have if they just enjoy kicking those on their death beds.
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I haven't read through this thread so this may have been discussed: I looked at another thread and it seems this is basically a site for 'trolls'- health care workers (at least people claiming they are) who come together to bash patients and get a rise out of us in anonymity because they are somehow frustrated. The name 'crass-pollination' also indicates this. this make me feel relieved that this is just a small disturbed group of people similar to the abbie smith blog (though at least she reveals her identity).
    Enid likes this.

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