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Really? Is this who we are?

Discussion in 'Lifestyle Management' started by Nielk, Oct 6, 2011.

  1. Nielk

    Nielk

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    For the past few days, I have been reading posts and threads that really should not exist on a forum of sick patients who are allergic to stress.
    I didn't realize that we have so many experts with inside information who can discern better than anyone else what REALLY happened behind closed doors.

    What do we know for sure? Annette Whittmore let go of Dr. Judy Mikovitz who is banned from the WPI lab.

    All the rest is opinions, spin, mean spirited comments, assumptions, taking sides no matter what.

    I understand that this is a very sensitive, hot topic. I know that many had put all their faith on XMRV panning out. Many put all their faith in Judy and who knows, she might join another lab and continue her work.

    This is NOT the end of the line for us!

    There re so many other studies going on. $10 million private money was put up for research. A lot of different aspects of the illness is being looked at. We have Rich with his Methylation theory. Dr. Derek Enlander got a donor o start a study at Mt. Sinai in NY. There is Dr. Montoya's study. So many more in the works. I know that Judy was and I'm sure still is very concerned in finding a treatment for us but, she is not the only one. There are many experts in the field who care as much.

    The thing is, why are we biting each other's noses off? I thought we were a community who cares about each other? What do we accomplish with all this in-fighting? Except raise everyone's stress level.

    All the arguments will not change the reality of what happened.

    This is a time when we should be comforting and supporting each other. Until all the truth comes out, especially the fact whether the VIP lab testing of XMRV can be relied upon, it's a very trying time for many.

    Instead of trying to be the champion of who is right, let's show some compassion. Let's show caring. Let's show love.
    ahimsa, pamb, WillowJ and 7 others like this.
  2. Trooper

    Trooper Senior Member

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    Thanks for writing this - i'm in total agreement :)
    ggingues likes this.
  3. allyann

    allyann Senior Member

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    Well said Nielk. Thank you for also saying it. We should be able to lean on each other during these confusing times.
    ggingues and Nielk like this.
  4. PokerPlayer

    PokerPlayer Guest

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    People can show love by standing up for what they believe in.

    Good luck everyone :)
  5. Gamboa

    Gamboa Senior Member

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    I totally agree with you. We should be supporting each other and trying to look on the bright side--and yes there is a bright side. I think in the next few years there will so much more known about this illness and, dare I say it, treatment for us.
    ggingues and Nielk like this.
  6. mellster

    mellster Marco

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    Well said.
    Nielk likes this.
  7. Dreambirdie

    Dreambirdie work in progress

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    Hi Nielk--

    Unfortunately when people get really stressed out, they tend to get angry and go on the offensive and look for someone to blame and attack. The truth is that they (as in WE) are hurting and afraid, but that doesn't feel as powerful as being pissed off and self-righteous, and ready (as you put) to bite someone's nose off. No one wants to feel the horrible sadness of this big ugly mess, because that kind of vulnerability is hard to embrace, especially when you are sick and weak, and scared about becoming sicker and weaker. Ultimately, being willing to be vulnerable and feel exactly what you feel in this moment is actually more sensible and productive in the long run, because it is always easier to make better choices when you can honestly face your fears, instead of reacting to them with more fear and working yourself up into a frenzy about them. But alas! that's not how humans tend to operate.

    Even the scientists, and the founder of the most promising institute for neuro-immune disease are guilty at this point of engaging in the great big ugly freak out that this has turned out to be. Amazing how no amount of education and worldliness is ever enough to be an antidote to that kind of predictably overly reactive reaction.

    As for all of us on the sidelines watching the scene implode upon on, I think that all we can really do is be responsible for our own feelings and mindful of our own buttons, being especially careful to not project our own fears and confusion (in the form of self-righteous opinions) onto the next person. If more people refuse to engage in overreactive threads, then maybe we can influence the general mood of the forum. And maybe not. Some people just really need and want to fan the flames of insanity, and if that is their choice, then they will do it whether it's good for them or not. As for me, I am steering clear of the fire. I'd rather do something else with the limited energy that I have than burn it up in useless arguing.
    Orla, Nielk and Kina like this.
  8. Nielk

    Nielk

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    Standing up for what you believe in is maybe courageous and moral but I wouldn't call that love.
    Love means compassion, caring, wanting to protect, peace, being connected.
    ggingues likes this.
  9. leela

    leela Slow But Hopeful

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    Well-said Nielk.

    And you can stand up for what you believe in without stomping the crap out of someone else.
    You can be firm at the same time as maintaining some degree of humanity.
    You can ignore the flamers and trolls so they don't get so much air time.

    I have often had people yell at me here for asking them to take it down a notch, with the argument that this is life and death, it's not a game, as if I did not know that. Amberiln Wu just died, Brian is sectioned--we all know this is not a game.

    We all know that. What seems to get forgotten here is that within the context of the forums, it is NOT life and death. It is people arguing. Plain and simple. Battles are not being won and lost here in the pages of PR. Winning your argument at the cost of a fellow patient's well-being is not a win.

    Each person is free to keep stating their view as much as they want to. A person with an opposing view will come around if and when they are ready to. Dominating them and insulting them is not going to win them over.

    The real battle is OUT THERE where the system has been taken over by greedy fucks who are obstructing the course of science, medicine, and the welfare of ordinary humans. That is the appropriate arena to yell, get angry, not take no for an answer, and take action. That is where we need to come together and FIGHT AS ONE, speak as one voice. Fix the system, then you can investigate all points of interest in the ME story.

    It doesn't have to be an either/or choice, or a zero-sum game. The real win we all have in comon is to get this illness conquered once and for freaking all. Arguing amongst ourselves is a huge waste of energy. Look at the people occupying Wall Street right now for a fine example of a huge variety of people and opinions addressing the core issue together, even as they address more immediate issues (food&shelter&hygiene in the square) and more specific ones (the myriad iterations of grievances.)

    They are self-organising in an open, participatory horizontal way, with respect for each other and the group as an autonomous force. We could learn much from them.
    SOC, Orla, WillowJ and 3 others like this.
  10. Andrew

    Andrew Senior Member

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    Here's something posted on the blog of Samuel, a fellow pwc. He says:

    You can see the clip and his blog here: http://thekafkapandemic.blogspot.com/2011/10/boys-in-circle.html
    WillowJ likes this.
  11. Sing

    Sing Senior Member

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    Thank you Nielk for a great thread, and Dreambirdie for the psychological view.

    I am thinking about how people lash out when they feel powerless. It feels like a way to take control, to get on the offensive, but this doesn't resolve that feeling of powerlessness, except very temporarily, and it adds a whole lot of negativity which runs down the group and individuals, then leads to more negative consequences.

    The other thought I have is how our culture teaches us to judge all the time--This is what we are supposed to do with uncertainty, to sum things up in terms of judgements. But this is divisive and limited; it closes doors, shuts down possibilities, etc.

    I am wondering if it is possible to see things as they are, even to be very analytical, without being judgmental and bombing others and ourselves with negative energy? --To be compassionate towards others and ourselves right along with being realistic and seeing clearly--Can we look at this a bend in the road, not the end of the road? No one knows how all this is going to play out. If we can suspend judgment and stay balanced, we'll be in the best position for the next good move, with conserved energy to make it too.

    Getting angry and judging, or despairing and imploding are temptations I know well--but they are temptations. We don't have to pick up the bait, because then we spring the trap. Leave that bait alone. A wise animal avoids those baited traps.
    ahimsa, WillowJ, Nielk and 5 others like this.
  12. Nielk

    Nielk

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    Leela said

    Amberlin Wu's light was just extinguished. I didn't know her personally - only through a friend and read some of her beautiful poetry. Like Dr. Dolan wrote about her today, she was an activist, but she had compassion. She was a soldier and knew who the enemy was. In her memory, lets understand each other - join hands and fight the real enemy out there not within these walls.
  13. Dreambirdie

    Dreambirdie work in progress

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    Hi Sing--I like this animal metaphor. It strikes a chord for me. My partner is a naturalist who has studied animal behavior for quite some time, and is currently working on a book of his musings on the consciousness in the plant and animal kingdoms. We've had a lot of discussions about competition vs cooperation, and especially about the skewed perception that we as humans are the superior species, the ones who feel entitled to have "dominion over the earth." The truth is that humans are in fact the most immature species on earth, and we still have so much to learn from other creatures about how to live in cooperation and harmony with each other.

    Maybe we are all suffering from nature deficit disorder, too much time spent in our own heads, and on the internet trying to prove our point over somebody else's? I invite everyone to talk to a tree or a cat or a bunch of pelicans, or whatever other species they have hanging around in their neighborhood, and ask these creatures how important they think our human opinions are, before "taking the bait" and stepping in to one of those exploding or imploding traps. Or better yet, listen to the silence in the space between the clouds, or in depths of the starry night. Sounds silly maybe, cuz what do stars and cats and trees know about the importance of retrovirus research and human conflicts related to that. Yet it does work wonders on the nerves and brain to step away from the chaos, even if just for a little while, and away from the proverbial "BAIT" of the endless circular arguments. If what you have to say is really that important, it will still be there when you get back, and it might even have gained a deeper level of understanding along the way.
    u&iraok, Sing and sandralee like this.
  14. Wayne

    Wayne Senior Member

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    Thanks everybody for your thoughtful comments. Sing, your words above remind me of a quote I read once: "Indulging in anger is an expensive luxury". Yes, it may temporarily make us feel more powerful, but from my observations, it rarely (if ever) leads to a positive outcome.

    For those of us with ME, indulging in any kind of emotion or thinking that isn't constructive is even more "expensive". The irony is that many of us have a "frayed" neurological system, and the challenge to avoid allowing ourselves to fall into this kind of trap is even more difficult than if we were healthy.

    Best to All, Wayne
    u&iraok, Sing, WillowJ and 2 others like this.
  15. alex3619

    alex3619 Senior Member

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    Anger is satisfying, anger is powerful, anger gives certainty ... but its all illusion. You get the same effects by being drunk. Bye, Alex
    u&iraok, taniaaust1, Sing and 4 others like this.
  16. glenp

    glenp "and this too shall pass"

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    Please everyone at this time we need each other more then ever. We do not want to see any more deaths over this new news. We need to stand tall and please be aware of others who may not be coping well. We will move ahead

    glen
    ggingues likes this.
  17. Nielk

    Nielk

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    Alex,

    Very well said.
    There's a joke that always remains in my head, which goes something like this:

    "You know what's wrong with the rat race? Even if you come out the winner, you are still a rat!"
    ggingues likes this.
  18. Nielk

    Nielk

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    Sing,

    So beautifully expressed! Being analytical - without judging. Does uncertainty necessarily have to result in divisiveness?
    Sing likes this.
  19. alex3619

    alex3619 Senior Member

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    Hi Sing and Nielk, according to some this comes down to personality type, although this idea is somewhat contraversial. See:

    http://en.wikipedia.org/wiki/Myers-Briggs_Type_Indicator

    I am an INTP which means that in interacting with the world I am driven to understand not judge.

    It is unclear how much this can be learned, and how much is a major fixture of personality.

    The real world usually likes people who judge. They can make snap decisions. It is easy to use this approach in making decisions in highly uncertain situations. This is summed up in the phrase: "Better to make the wrong decision than no decision." Those who take the time out to understand before deciding take much longer to come to a decision.

    This answer is a typical INTP answer. ;)

    Bye
    Alex
    WillowJ likes this.
  20. Wonko

    Wonko Senior Member

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    probably, from an survival perspective there are advantages in everyone not only not following the same approach (which could be wrong and result in disaster for the group), and proponents of opposing points of view being absolutely convinced they are right, resulting in conflict because each side knows the other are dangerous idiots (at best).

    Granted logically it's not an ideal setup in most situations, but then people dont operate on logic, especially when they feel threatened, our brains shut down and instinct takes over.

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