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‘’Progress will be made’’

Discussion in 'General ME/CFS Discussion' started by Quilp, Sep 21, 2012.

  1. Quilp

    Quilp Senior Member

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    I am ashamed....... I am ashamed because I came to feel hatred towards those that suggested contamination; I’m ashamed because I came to love those that suggested it wasn’t.​
    Even as the conspiracy theorists stretched the bounds of disbelief beyond my horizon, I continued to love them.
    As the negative papers gathered momentum, I would go back to the same threads over and over again detailing why contamination couldn’t be so. I needed to feed the fate and starve the doubt; my doubt.

    I remember trying to follow the science, armed with a distant GCSE in biology. It felt like I was trying to understand the Old testament written in Latin.
    I felt so inadequate as the medically inclined and the knowledgeable traded their wares with an erudite solemnity that left me feeling marginalized.
    It is true to say that in such circumstances one such as me is left to believe what one wants to believe.

    Over the last few three years I have received messages into my inbox that spoke to me in ways I cannot even bring myself to share. Isolation, desolation, desperation; young and old lives slipping away before me. How much more can we take ?

    Have you ever had a nightmare in which you can see someone drowning, but you are powerless to help ? Did you ever imagine that those nightmares might bring themselves to life ?
    I am in a small house, alone in the North of England speaking to myself, but talking to you. I can scarcely believe what has happened in the last three years. Did that really happen ?
    Life passes us by so quickly that when we come to open our eyes, it’s over.

    Where do we go from here ?
    So many of you choose not to talk on Phoenix Rising, so many log in, take in what you can and leave.
    I wonder if your suffering is greater than mine. For many of you I’m sure it is. To you I cannot say what I want to because I cannot find the words. And even if I could, would it help ?
    I need to walk away; to come back another day and read what I want to hear.
    I want to believe again with the same religious zeal that I felt on 8th October 2009.
    I know I am no Dr Lipkin, and that the best I can do is to offer my incoherent ramblings, warm words and promises which I know I cannot keep.
    But the normally circumspect Lipkin has afforded an insight in what is yet to come when he says that progress will be made.

    I believe it will be, our October 8th 2009 will come again, only this time, nobody will be able to take it away from us.

    ‘Hang in there Quilp, hang in there’.

    I’m doing my best, and especially to those of you who are really hurting right now, I hope you can too xxx
     
     
     
     
     
     
     
     
     
     
     
     
     

     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
     
    Simon, heapsreal, justy and 1 other person like this.
  2. jspotila

    jspotila Senior Member

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    Progress will be made but it will not be made in one fell swoop. The zeal of October 8, 2009 came with a heavy price, and such zeal is dangerous no matter what scientist makes the discovery, no matter what the discovery may be. Trust science over the scientist (or politician, or doctor, or blogger, or me).
    Simon, taniaaust1, Merry and 2 others like this.
  3. beaker

    beaker CFS/ME 1986

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    ((( Quilp )))
  4. Ember

    Ember Senior Member

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    There's no need for shame. There's heroism in the many ways that we keep hope alive.
    Adster and SOC like this.
  5. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I know that feeling well. I just didn't read a lot of the discussion/debate over XMRV. I followed the high (and low) points until those who are more knowledgeable than I got it sorted out.
  6. Quilp

    Quilp Senior Member

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    ''Not in one fell swoop'' - I don't think you can say that with any more confidence than I can say there will be a cure in three years. - Nobody knows what the science will bring, however unlikely that might seem.

    ''zeal is dangerous'' - I just checked my definition of 'zeal' - ''great, sometimes excessive, enthusiasm or keenness''
    Given that many of us are dying, I think I can live with dangerous.

    ''The zeal of October 2009 came with a heavy price''

    There has never been so much interest in this disease, and Lipkin himself said that it has come as a result of the XMRV debate.
    A reseacher made a mistake; but that mistake has resulted in a paradigm shift in the way that this illness is now being addressed. Perhaps if that mistake had been made twenty five years ago, my life and the lives of others would now be worth living.

    Besides, who has never made a serious mistake in their lives ?

    We have a researcher, who I am led to believe is suffering financial pecuniary as a result of that mistake. I agree, for her it came at a heavy price. At the same time we have employees of the CFIDS,some of whom during their tenure have earned closed to, or more than, a million dollars.
    During their time the debate has moved backwards, and we have been left more and more marginalised. How many mistakes are to be found there ? Those being made to pay the heavy price for those mistakes can be found all over the world.

    October 8th 2009 showed me what might be achieved. 18th September 2012 showed me what will be achieved.

    Kind regards, Mark

    I don't mean to come across with pompous solemnity, and I apologise if that is so. More importantly I am quite happy for you or anyone else to address what I have said. My mind will either be changed, which is fine, or my resolve will strengthen, which is fine too.
    Here's to that progress being made much sooner rather than later.
    Lou and ggingues like this.
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "SQUEAKY WHEEL GETS THE GREASE"

    very, very important lesson to learn when dealing with politics.
    jimells and Desdinova like this.
  8. PNR2008

    PNR2008 Senior Member

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    I remember the Elaine Defrietes "discovery". I heard Peterson, Cheney, Klimas, Goldstein, Bell speak numerous times and I am left with a skeptical and diminishing hope that comes from being war-weary. I'm in battle every minute of every day and desire to be alive when improvement comes. This illness is a heartbreaker so every new idea is greeted like a new date--cautiously. All of us are warriors and deserve to get the fruits of our labors - CURE or at least improvement. Even if my condtioned allowed 25% - 50% more energy and function, I'd be dancing in the streets. Here's to fancy footwork for everybody:hug:
  9. Quilp

    Quilp Senior Member

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    I wish I had written that myself PNR2008, thank you.

    I wonder what I would be happier with - false hope or no hope at all. Of course false hope is only realised towards the end, and the disappointment thereof might well be enough to offset, even surpass any pleasures imbibed at the outset ( and indeed during the journey )

    Perhaps i'm like the gambler who's happier to stake his life on one last gamble, knowing that ''the big one'' will be enough to live the life I once had, rather than the man that is happier to play cautiously knowing that his stake will live to fight another day; then another day, then another day.

    Perhaps I want to believe so badly that I am blind to the bigger picture.

    Perhaps i'm so gullible that i'm the one that delights in the ''scientists close to curing cancer'' headlines because although deep down I know that this is another paper seller.......that initial pleasure I feel upon reading such headlines
    are enough to suppress the wise one that resides deep within my psyche.

    I think one thing we can all agree on is that now,more than ever,there is hope. In a race against time we can only trust that that hope stays ahead of the clock.

    Kind regards, Mark
  10. biophile

    biophile Places I'd rather be.

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    Little Bluestem likes this.
  11. Quilp

    Quilp Senior Member

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    Hello biophile, I can't even bring myself to open that link.
    Dr Andrew Lloyd may well be correct, he may well be wrong.
    I believe that treatments for M.E. will come along before the scientists fully understand the pathogenesis of this illness. It has happened in other illnesses.

    In fact those treatments, trials if you will ( like Rituximab and Ampligen if approved ) are moving forward.
    I have been ill for well over seventeen years; I've only just fallen into my forties. I will never be able to do what I did when I was twenty three, even if there was a cure tomorrow.
    Dr Lloyd can keep his supposition as long as they give me some semblance of a life worth living.
    I want to work so I can provide for my family; I want to give up the benefits I am on; I want to walk in the Yorkshire Dales and look over the most amazing scenery; I want to stop crying alone at night when my wife has gone to sleep.
    I want to get p8ssed if that's what I want; I want to live rather than survive; I want to feel the sun on my face and feel how good it is to be alive.
    We are like birds in a cage, perhaps we might never be set free because of this illness, but at least I can hope for a much bigger cage, one that's so big I barely notice it's presence.
    I am a betting man biophile, and i'm laying down odds that that cage will come my way much much sooner than many might think.

    Kind regards, Mark
    SickOfSickness likes this.
  12. currer

    currer Senior Member

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    The supreme advantage of the XMRV findings was - that we would not be alone with this illness.
    A retrovirus threatens everyone. Therefore the neglect and denial of ME/CFS could not be safely allowed to continue for another generation..
    The reason funding was put into XMRV was because of the dangerous consequences of a "new" infectious virus.
    Not to us but to others.

    It remains to be seen how much funding will be put into ME/CFS now if it is not believed to be infectious.
    jspotila likes this.
  13. taniaaust1

    taniaaust1 Senior Member

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    If an important part of the ME/CFS is worked out, I personally dont think it will be 10 years for them to start treating us all (as long as they have some drug or drug combo to treat us with).

    Maybe it would of taken 10 years after a discovery before everyone had computers but nowdays we are in the FAST AGE... and with any new discovery, there will be some who right away try following up and treating it. News spreads now like wildfire If someone is successful, very very soon lots of others will be following if there is an accessable med out there even if its approved for a different condition. If lots of ME/CFS people are suddenly getting better, the medical profession WILL NOT be able to ignore that and will be forced into making it accessable for the rest of us (maybe that part could take a few years thou)

    All we need is someone to make that one huge important discovery on the case of the illness and the physiology of it.

    Im more confident on that Rituximab may work out then I was on the XMRV. (Im very glad XMRV didnt work out.. we may been viewed upon as AIDS people get viewed upon if we had a retrovirus and may of been then faced with issues we dont have now. The idea of carrying a retrovirus for life..was a horrific idea to me). I say Rituximab "may" work out as like most long termers, Ive seen so many ideas come and go.. some which did look very hopeful. That Im never going to think something is "it" till it is quite clear it is. One can walk a middle ground of being hopeful that something "may" work out.. holding hope but nothing to really lose if it dont work out..
  14. MishMash

    MishMash *****

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    Dear Quilp,

    To all your points: yes, yes, yes, and yes. We have all gone down that path before. Down that garden path. Or empty rat hole, whatever you want to call it. And felt a little stupid. I'll forgive myself, if you forgive yourself.

    My latest potential set-up for disappointment is my enthusiam for Biogen's new ant-inflammatory BG-12, which has been proven in expensive, scientific, validated trials to reduce inflammation of the neurons. Among MS patients the rate of relapse (periods of numbness, paralysis, blindness, cognitive breakdown, fatigue) were reduced by 50%.

    So in my mind I'm already declaring victory for something that might be effective in off-label treatment for us. Also bolstering my naive enthusiasm, is that BG-12 seems to jibe with the overall oxidative stress and glutathione depletion theory. BG-12 is basically a rip off of the methylation theory, which is the subject of much discussion on these forums. Poor Richv won't get a penny, and he developed the theory before damn Biogen.
  15. PNR2008

    PNR2008 Senior Member

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    Why should anyone of us be hard on ourselves. This illness is deplorable and no matter how long one has been sick, it's loss, loss and more loss. Actually it means we still have hope but it has to be tempered otherwise the come down is horrible. Yet who of us wouldn't enjoy the endorphins released by thinking this really could be it. I just know that every knock on the door isn't Publishers Clearing House even though I have a minibank van by the door resembling their van. I can still dream can't I?
  16. biophile

    biophile Places I'd rather be.

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    Hi Quilp/Mark. I agree about living rather than surviving. A bigger cage would be nice too! At a bare minimum I just want to be well enough to finish a few projects I have planned and live a little better.

    taniaaust1, my feeling is that the Rituximab finding will become an important pathophysiological clue to explore rather than standard effective treatment. I want to agree that progress will now be faster than before.
  17. Holmsey

    Holmsey Senior Member

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    "Why should anyone of us be hard on ourselves"

    While I'm not suggesting anyone should, it's still a good time for pesonal introspection.

    I remember the vitriol on one closed thread because some, of which I was one, suggested they hoped XMRV was not the answer, I couldn't get my head around why anyone would want an unknown AIDS like illness with no treatment options.

    It didn't help that one S.W. announced shortly after the first 67% infection figure was touted, that he felt there had to be an error as 'positive' results were 'rarely' that high, nobody wants to hear it but, he was right on that call and we were wrong. We were at each others throats, people left this site, others made themselves ill.

    We need to learn, we need to support, we need to tolerate, this will come again, there will be disagreement again, there will also be answers and hopefully a cure.
    Valentijn, Aileen and jspotila like this.

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