Discussion in 'XMRV Research and Replication Studies' started by usedtobeperkytina, Nov 23, 2009.
I love the phrase, "profoundly wry." Brilliant.
I'm pretty sure Thomas Noguchi was not involved
The discourse here may all be wildly over my head (it's more than likely!), but Wildaisy, I think Tina was just teasing me about the honesty of the hospital where the NK cell study was done...I meant, Thomas Noguchi was not involved in a 1990 NK cell study .
Seriously, though, for years (not just in respect to this NK cell study) I have wondered at the state of mind that could see alarming objective test results, and sweep them under the rug. The Chairman of Medicine at this particular hospital was a cardiologist and he shut down the CFS research program and clinic because he didn't want their august institution associated with some whiny women's condition. (I paraphrase, but that was what I heard at the time from the doctors who had been involved.) That was how they felt, despite the evidence from their own labs.
Solid data about the gravity of CFS/ME has been out there for many years. I can't really accept that this has all been some kind of innocent, colossal betise. The reaction to this disease by the medical profession and federal health agencies has simply not been rational.
Between a rock and a hard place
Glad you enjoyed it Tina. I did too. Almost poetry? Maybe one day I'll write some actual poetry.
Or maybe not...
I was initially sarcastic and edited towards sincerity. At this moment in time I feel as though the paradox was that I was only able to write a sincere account by bowing to the inevitability of the rewriting of history. I had a choice between believing in a dark existence where everything was controlled by forces unknown and our suffering was engineered by evil hidden rulers, or believing that our human frailties and the imperfections of this world were equally adequate to explain the known facts. I was tortured by the impossible task of finding a way to definitively choose between the two alternatives. My pursuit of the truth led me inevitably towards the dark version, but as I strove to set it down in a provable and demonstrable way to establish it in the world and bring change, I found I always fell tantalisingly short; I was always missing one last piece of the jigsaw no matter which avenue I explored. And the pursuit of the missing piece that would establish once and for all the reality of that dark truth was harming my soul, and I was feeling mental and physical anguish from the agonising pursuit of an impossible goal, so that when equally compelling alternative explanations - mundane and earthly and backed up by documented data from authoritative sources - were subsubsequently presented to me, I found it was somehow less painful, less challenging, more nurturing of my own being to accept the official version of events. So in the end, as I said: "OK, I'll buy the story." It will be the story presented to the world, and the one that history will record, that much was eventually obvious because if there is a conspiracy, then it must be one, undivided, perfect and unassailable conspiracy - which is exactly what it is, and that's the truth - and the very act of attempting to challenge the lie which we are all obliged, forced, compelled to accept in this place requires sacrifice of one's self and is in any case inevitably doomed to failure. Whereas blinding ourselves to that truth, and meekly accepting the more comforting conventional story, proved comforting, and restored my spirit after my struggle to believe in the unacceptable truth. So in the end I decided that what was healing to my soul was to believe in the lie and bow down to the inevitable, that we cannot challenge our bondage and will be happier by deceiving ourselves that everything is exactly as it appears on the surface. By letting go of the futile pursuit of truth and preferring the lie, I could continue to be, here, in this place where the lie is the rule and the truth belongs to the rulers, not to me. I had the choice to believe the truth and be unhappy, or to believe a lie and be happy, so in the end, inevitably, my mind (was) adjusted in order to be able to make the choice to believe the lie of human frailty, not the truth of sinister intent, and thus I was healed.
Or to speak more plainly: I can't handle the truth, so it makes no sense for me to seek it, and in the end I must believe the lie, a script written to sooth my aching heart.
Paradoxically inexpressible. Believe what you want to believe, but in order to be happy, relax, and accept the lie without guilt or shame, because the only true nobility lies with the dark, hidden, unseen forces in the shadows that work tirelessly and ceaselessly and selflessly and soul-lessly to enslave us and protect us - for our own good - and not with the vain pursuit of a truth which cannot be accepted yet cannot be overturned.
I am not ungrateful Tina, and did not mean to sound sarcastic, and I am glad you can see that I am sincere. Yes, I am leaning that way. Do I really have any choice?
a poet and don't know it
Believe what you want to believe,
but in order to be happy, relax,
and accept the lie without guilt or shame,
because the only true nobility lies
with the dark, hidden, unseen forces in the shadows
that work tirelessly and ceaselessly
and selflessly and soul-lessly
to enslave us and protect us -
for our own good -
and not with the vain
pursuit of a truth
which cannot be accepted
yet cannot be
Looks like poetry to me.
Ok, so do you A. really believe that human frailty cause the years of misinformation and lack of effort or B. do you just say you have to believe it because you can't prove and would hate to think the sinister is true?
Come on, A or B.
One of the reasons I don't believe in the sinister is because there are too many involved. As a reporter, I have learned, that people have two things that push the truth out into the open:
1) a conscience. If they see corruption, and they are not benefitting from it, in time, their conscience will get to them and they will be moved to let get it into the public. The problem is no federal shield law for reporters which allows sources to be protected, by law. But still, as a reporter, I have receive anonymous letters tipping me to new stories and telling me where the evidence is.
2) someone gets mad. No one knew who deep throat was for years. When he was revealed, it also became known that he had a personal reason to be mad at the people he told on. He had been passed over for a job back then. Now, people may protect their professional friends for a while, but human relationships, especially in the work place, often lead to disgruntlement.
Surely, if this were a mass conspiracy, at some point in 20 years, one of the players would have talked.
I would love to think like this, I really would like to go down the easy path, but I have two members in my family who have personality disorders which put them in the psychopath/sociopath league due to the manipulation and control they have over others. They are not like us despite appearance and should never be given the benefit of the doubt. If you do they destroy you.
They say that one out of a hundred people is a psychopath,
These people are highly intelligent usually and very very clever at hiding their disorder, and are found especially in professions where they have power, like doctors and polititions. Many world leaders have psychopathic traits or are outright psychopaths. The dominant feature is no conscience. They are not like us.
I can see the temptation to go down the easy path, but the ability to face reality is directly related to our mental health and if we sacrifice truth, I think that that we jeopodise mental health increasingly as we cut out more and more that we do not want to face.
The result of facing the truth does not have to be despair though despair has a useful function in shaking us awake to the most important questions in life - like why are we here and is there a God? Only the brave will survive in this new world.
EVIL PREVAILS WHEN GOOD MEN DO NOTHING Friedrich Nietzche
I'm sorry Tina, I know you keep trying to pin me down, but my mood keeps oscillating from pole to pole and whether it's A or B depends on whether I'm in a positive or negative frame of mind. Sometimes I faintly perceive those hidden, unseen, dark and inhuman forces in the shadows after I've foolishly ridden a wave of optimism, tried to write something uplifting, and aimed for an impossible perfection - it takes a lot out of me and something always drives me back down again. If I had a stabilising force with me perhaps it would be different, but at the moment, I don't. I used to love being in this place, but now I feel lost.
I really am sorry, because I feel bad for sending vibes from the other side of my story out into the world. I seem to remember a while ago writing some things that were rather more attractive, but I tried to give too much of myself earlier and this is where I've ended up as a result. 9am and I haven't slept all night, I don't know why I'm doing this at the moment but my sleep pattern is knocked for 6. It was very selfish of me to post, I suppose I knew there would be good people there to somehow turn it into something positive, and Gracenote made it look as beautiful as was possible given what it's about. Thank you Gracenote, but the thing still looks like an abomination to me at the moment. Tina, your arguments don't apply to what I'm describing, because your arguments apply to the physical realm. I was describing a deeper experience, and not one I enjoy. It's a false understanding, and organised belief in it is responsible for our ills, but those who follow that path by definition do so in secrecy and thrive because their existence is not believed; perhaps I wanted to shine a light on them. Or perhaps this particular outpouring should be destroyed.
Maybe there's something more worthwhile in my other posts from happier times I can't now remember, but in a period of desperation I looked back through what I've written and felt ashamed of what I saw. I'm not proud of myself, not at all. Did I ever write anything worthwhile? If so, I can't seem to find it now.
Mark, thanks for sharing your struggle. That's what made your previous post so profound and moving to me - not that you had answers, but that you were wrestling with the questions. Your contributions are much valued.
In Zen, we practice "not knowing," learning to hang out, to relax, even to rest in the presence of all the unanswered questions. (Not that we stop looking for answers!)
the creative process
Your posts are always appreciated by me. You bring questioning, passion, conciliation, and a willingness to grapple. Also, at times, a playfulness. What you're struggling with right now reminds me of what THE CREATIVE PROCESS is all about according to Batson, Ventis, Wallace and others.
Creative thought begins with a period of baffled struggle in which the individual attempts to solve the problem in terms of his or her existing cognitive structures. If this effort produces a satisfactory solution, then there is no need for creativity. But what if it does not? Typically, even though the existing structures do not permit a solution, the thinker keeps trying to make them work; they are pushed to the limits.
He or she begins to feel trapped within the current organization with no way out; the problem becomes an obsession. This preparatory period of beating one's head against the problem within the existing cognitive structures is a necessary precondition to the emergence of a creative solution.
When exhausted, one finally gives up the attempt to solve the problem. In giving up, one relaxes active use of the existing cognitive structures. This relaxation appears necessary if one is to be able to think about the problem in a new way if a more adaptive organization is to evolve.
Once one has given up the attempt to solve the problem, new more appropriate cognitive structures may emerge. These new structures permit insight; the elements of the problem can be seen in a new way, a way that allows solution. This may come as a "happy idea" which provides release of the tension that has been building through the earlier stages.
Once the "happy idea" occurs, one must elaborate it and test it against experience to find out if it works.
One final thought comes from another of my favorite grapplers, Carl Jung.
Out of the collision of opposites
the unconscious psyche always creates a third thing of an irrational nature,
which the conscious mind neither expects nor understands.
It presents itself in a form that is neither
a straight "yes" nor a straight "no."
Love it! Thanks Gracenote, for the reminder!
Thanks once again Gracenote, exactly, I seem to have become a synthesizer!
And I thought I was philosophical. You guys got me beat.
I believe the heart is treacherous (from the Bible).
It convinces us we are doing something for the good of others, when we are actually acting in self-interest. Such as the politician who takes some action, thinking he is doing it for the good of the public, when he really just wants to be re-elected.
It is self-conning. It happens in all of us at some point. And for some, it is the leading force in our day to day actions, a heart that is deceiving us into thinking this way.
So these researchers are, in my opinion, not sitting down an plotting how to spread a lie. They have convinced themselves that what they preach is gospel. (speaking of which, prominent preachers might be a great example of this.)
So in their mind, they believe what they say and believe they are serving mankind, even against great obstacles (such as an illness that just won't fit into a nice and neat box and a bunch of neurotic, obsessive patients that keep pricking him in the side and just won't go away). But they press one, giving of themselves in their service, thinking they will be vindicated and shown to be the heroes.
But for many, it is actually their ego and sexism that is the driving force of their campaign, but they are blinded to their own motives.
I have seen this many times. And as I said, in a minor or major way, we have all been victims of a deceptive heart.
If I understand you right, Tina, you are saying that in their own minds, people like SW are doing good.
This is what I wanted to understand about them, to answer the question as to how they should be treated when they are found guilty for their crimes, as they surely will be. I wanted to know if they were deserving of compassion or should be destroyed. It seemed a fundamentally important question, what should be done with those people.
And it seems you agree with my conclusion that they have been deceived. By what, I cannot say
Having followed the whole sorry saga of SW's career, believing that him and his colleagues think they are doing good does not fit the facts.
They talk very plausibly and can get those in authority to listen to them but they never let the truth get in the way of what they say.
Deciding, unilaterally, to rename ME as CFS without involving or consulting any of those who had been researching and treating patients for years was bad enough, but they also gave it a different definition from the one being used in the US for CFS.
That this would cause endless confusion did not stop them.
The fact that ME came in epidemics is never mentioned.
Recently he wrote an article where he said that CFS campaigners were attacking the profession of psychiatry which is totally untrue. Read any UK forum and people are encouraged to seek professional help if they are suffering from depression or anxiety.
His recent statement that he couldn't see how they had got from prostate cancer to CFS implied that it was ridiculous and was a subtle way to denigrate the scientists, yet he must know about the RNAse connection.
For referenced evidence of his two faced statements about ME and CFS see
CDC and NIH Intentionally Crushed DeFreitas and her RV Findings
Agreed 100%. Reading this thread as Mark pointed us to it in another thread.
It is absolutely beyond doubt (if one considers all the facts known) that Wessely, White et al. and CDC and NIH have all known from near the beginning that ME was an extremely disabling somatic disease probably caused by a virus. They all very intentionally and consistently spread misinformation and lied from the beginning.
Don't ever doubt that we are the victims of a carefully crafted war on science and patients by CDC, NIH, UK Government and the UK psychiatrists. If you have any doubt read Osler's Web and Magical Medicine where the undeniable facts are laid out in excruciating detail.
NIH and CDC are responsible for DeFreitas' retrovirus being ignored. They knew a retrovirus was a good candidate for causation and they intentionally crushed DeFreitas and her findings. CDC retrovirologist Tom Folks appeared to be non-partisan, but his assistant Walid who did all the tests had extreme contempt for the fake disease he was forced by his boss to study. They did lots of things wrong in the lab. And they would not fly to Philly at DeFreitas' invite because they claimed there was no money (a bald lie). DeFreitas also offered to fly to Atlanta at her own lab's (Wistar's) expense and was refused.
DeFreitas' commercial partner Chiron found the retrovirus, but then couldn't any more and dropped the whole thing after NIH's Stephen Straus told them it was a load of BS. He was telling anyone who would listen that "CFS" could not be caused by a retrovirus since retroviruses cause serious chronic neurological and immune disease- which he said "CFS" certainly was not.
CDC published their own negative findings over and over. And let's not forget the general oft-repeated message of NIH and CDC that ME patients are hysterical, depressed somatisizers.
For what its worth, those that will have egg on there faces ( which are many ) will probably try to find a way out if they can. Im worried unless evidence comes along that xmrv causes illness, And they have there small % of healthy people with xmrv already, they ( the goverments ) will conclude yes its there, but causes no illness.
They wont even have to determine if it causes illness or not. They can just say theres no evidence. Some will argue there are the cfs people that are the evidence it causes illness.
But as was posted before on this forum, its easy just to make up any scenario where CFS groups will have it more than the healthy population. Unless hard evidence comes along that xmrv causes illness, thats there way out right there.
So be prepared for that i reckon. 3.7 % Of the poulation with xmrv is a lot. they must be extremly concerned about the implications of this. what will the % figure be in twenty years time, or 50 years ? 25% of the population with xmrv ?
Do you not think that 1 they are extremly worried, and 2 they dont know how to deal with this news.
If there is no evidence of illness, then yes thats there way out, but they must also privately be worried that they could be wrong.
I think they will say the virus isnt doing anything, to buy themselves more time, and try not to alarm the public, while they secretly try to find out if this could turn into a world disaster say in 50 years.
Because make no mistake 4% will become 8% and 16% and so on untill the whole world has it.
if they find its a very bad virus to have, i suspect they will try to develop a vaccine for mass vaccination, saying even though there is no evidence it harms anyone, as a precaution you should get the vaccination.
The evidence of the cfs groups having it in large numbers and being ill will most likely spur on most People to have the vaccine and the goverment doesnt even need to scare the general population or admit to anything, to get the vaccine uptake high.
We as cfs sufferes will do that for them. Not sure on the private medical companys outcome on this though, if they find evidence of illness with xmrv then i think the goverments are in deep trouble.
I hope once we get past the, is it there, and do cfs people have it, a real effort to understand disease will happen, because untill then, this all could be a merry go round.
I suspect it does cause illness even directly, or the 2 strike attack mentioned by others. We need proof im afraid. Treating patients with anti virals may not be enough, ( though of course it will be for those getting better, rightly so ) But from the goverments point of veiw they could say it may be other viruses that the drugs are helping. Hence a improvement in health.
Sorry to be so down beat, but after 15 years of this in the uk, after a while a pattern forms. and i see the same pattern in america. and elsewhere. We are fighting this on so many different levels. lucky us. we need to cut to the chase about what this virus can actually do. instead the world is squabbling if its even there, then they will do the same about its effects.
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