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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Something inside so strong

Discussion in 'General ME/CFS Discussion' started by Quilp, Aug 30, 2012.

  1. Quilp

    Quilp Senior Member

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    Something inside so strong
     
    Catching sight of a rabbit meandering across his garden lawn, a surge of excitement swelled within his modest countenance. With uncommon alacrity in men of such advanced years he turned to his wife of sixty years only to yield to the unpalatable truth; his wife was gone.

    I cannot explain why the old man felt the need to share his pain with me; the haunted whites of his eyes spoke of a loss beyond my understanding. I fell upon the idea that, beyond the shell shocked man I now saw in front of me, was a man whose faith had deserted him. The notion that he and his wife might be embracing each other (as you read this text), in a place of such intense happiness as to be beyond our comprehension, is so compelling to me that I struggle to accept the fact that I will live a lifetime and never know the truth.

    In the desolate ruins of what were our hopes and dreams, there are to be found experiences like this - pieces of a jigsaw, part of a bigger picture lending itself to something more, something yet to come for all of us.

    Our loved ones, why?…….

    Mother, why do you believe a stranger before you believe the son you gave birth to, just because he has letters of the alphabet after his name?

    Father, why do you believe in a stranger who doesn’t care if you live or die over a son that would lay down his life for you?

    My friend, we lived our lives as one, from boy to man, a bond so strong we said death itself couldn’t break; and yet, you listened to a stranger, before you talked to me.

    The truth is so incongruous with Wessely’s Narrative that it feels like a violent crime is taking place right before our eyes. We scream with toxic fury only for our loved ones to look past us, beyond us, through us. They continue to walk by, silent and unnerved. Closer to death than to life, have we become ghosts?

    What will you do when they call you from Dignitas; what will you say when they tell you we’re gone?

    Whilst suffering from wrong thinking and indulging in a fear of activity I applied for yet another position with a leading employer. Despite bone crushing, soul destroying pain I resolved to march right through this b*****d illness.

    I was successful; I was now a Data Entry Clerk; eight hours a week leading to more, dependent on my health (which I understated with deliberate bluster; some might even say I was conservative with the facts; I might even admit to you, I lied).

    I did so in order to engage a position of any kind, anywhere, for the minimum wage. Give me the health to do so, and I would gladly sweep the streets of England for the rest of my working life. This might be what desperation reads like; it is undoubtedly what determination feels like.
     
    I was a somebody again, I had some semblance of self respect. The shame I felt, upon receiving my benefits forever and a day, subsided. The happiness I felt in being in employment was to be found somewhere beyond words.

    It was witnessed some days earlier when I saw a boy, arms stretched out wide, running as fast as he could, shouting as loud as he needed and laughing as much as he wanted. Tell me, when did you last feel like that? Why can we no more keep hold of that feeling than stop the earth from turning?

    I have never stopped trying despite all confidence in my own abilities vanishing in an instant, only to return, like a street light flickering on and off during a storm. I never will stop trying because like a moth attracted to a flame that will kill it, I can’t help myself.

    Perhaps most poignant of all, my dear brother. His meagre wages were the only defence we had against our house being repossessed. He hated his job so much that, at times, he confessed to being unable to see a way out. I used to see him at 5am setting off for work on a freezing cold January day with sadness permeating every fibre of his being. He tried to hide it, but the more he tried to hide it, the more able I was to see it.

    Like the whites of the old man’s eyes I saw in my brother something that had died.

    It hurt me so much that its resonance will haunt me for the rest of my life. You cannot see the tears rolling down my cheeks, but I wish you could see the pain inside.

    Perhaps those of you that are still reading this, and who remain convinced that we suffer from wrong thinking and a fear of activity, should look away now, because I have nothing left to say to you, I have nothing left to give you.

    Please, with love and compassion look behind The Wessely Narrative. In putting the pieces of the jigsaw together for yourself, the picture will become clearer. I know it’s not easy, the picture might never be of high resolution, pixelated images sowing seeds of doubt; I understand, all of us with M.E understand; that the psychiatrists wouldn’t do such a thing would they? Surely our Government wouldn’t allow it - and our G.P’s, well, if you can’t trust them, who can you trust?

    While psychiatrists like Wessely and his alphabet, snaking on behind him, slither from one conference to another, from one research paper to another, from one interview with the BBC to another, those with M.E are living this illness, suffering this illness, dying from this illness. From every fibre of my being, if you don’t believe the truth for the sake of all those suffering from M.E. then believe it for the sake of yourself, your children, your loved ones, because this barbaric illness is gathering momentum.

    M.E. is a life tariff, without any prospect of parole. That, and the shameful politics that have infected the medical profession, have the capacity to take you and your loved ones to a dark and disturbing place.

    And my job? I think you already know the answer to that question...



    Dedicated to Professor Malcolm Hooper and all those other scientists who, despite intense political pressure, dared to speak the truth on our behalf.
     
    Mark, Xandoff, peggy-sue and 4 others like this.
  2. alex3619

    alex3619 Senior Member

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    I am a fan of Prof. Hooper's work and appreciate the work of everyone who has helped him along the way. This is only the beginning. I think the "Wessely School" is on borrowed time. Eventually they will be a footnote in history - another mistake in psychiatry that devastated the lives of hundreds of thousands of people. The problem is that people are suffering in the meantime. My guess is that the idea of a dysfunctional belief has caused a two decade slow down in research. That two decade delay conservatively impacts seventeen million people (actually I think its more like thirty million). Seventeen million by twenty is 510 million years of suffering. Thats half a billion, and counting. The sooner it ends the better. Bye, Alex
     
  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    I also want to see Wessely et al :p prosecuted
    This is a grotesque Crime Against Humanity, a perverse, sly warping of governmental and health tools/systems for aiding others, into a method to rape them of hope, protection, care, support respect and life itself.

    it's no mere accident, minor screw up, a gaffe, but an outrageous crime of either bigotry (refusing to see reality), or cold blooded manipulation.
    Justice must be seen to be done.
    Forever more it must be seen that those with power are ACCOUNTABLE.

    Fed up seeing slime being allowed to slink away rather than hauled out and pilloried.
    And then it happens again and again, because they haven't been dealth with harshly out in the open.

    The sly, cowardly, manipulative way all this has been done, the "gaslighting" makes it worse than simply torture or murder.
    SLIME ! :sluggish:
     
    justinreilly, Xandoff and peggy-sue like this.
  4. maryb

    maryb iherb code TAK122

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    What a moving piece. I don't like to start the day with a tear (sorry Wessley) but it was worth it.
    I desperately hope you are right Alex about history and the Wessley School. The likes of Prof Hopper should go down as our saviours.
    I honestly believe its too late for the likes of me, I will never work again, but for the young ones I hope so much they will have the chance to live the life they deserve.
     
    peggy-sue likes this.
  5. Shell

    Shell Senior Member

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    I too hope the "Wessley School" is on the way out. But it's a very little hope. The egos, politics and of course money seems to be stacked against us.
    I also feel that because of the "it's all in yer 'ead" policy, that I'm not allowed to have any "feelings" about how these diseases (FM & ME) effect me and my family. Because we are forced to be "positive" more for the sake of others than for our own, we are denied the opportunity to properly work through the sorrow, grief and fear that comes with all of this.

    As a culture we are so afraid of grief we refuse to allow anyone to express it. Whether it's over the loss of so much thanks to sickness, or the death of a loved on, or the miscarriage of a baby, we are expected to get over it and move on. It's unhealthy and unloving.
     
  6. Holmsey

    Holmsey Senior Member

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    I read PHANU Rising II and then by no more than accident this, one is hope one is reality, what separates the two, in this case only time.

    We don't need Professor Hooper to tell us we are ill, and we see the deluded better than they see themselves. While no doubt there are those claiming the name we so despise simply to be supported by the state, we know todays reality because we live it, but while we live we strive toward the hope which is tomorrow.

    A truth denied is like a bowl of water held, never still. A truth denied has infinite energy, do those who deny it?

    Stick in there Quilp, stick in there.
     
  7. Xandoff

    Xandoff Michael

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    Northern Vermont
    Thank you Quilp for sharing this. It is hard to accecpt our illness when 99% of our medical community and yes even family and friends think "this" illness is in our heads. There is lot of money to be made by The Lord Wessley School of Stupid GETS! Money and power are thier motivation. Lupus and many other auto-immune dis-orders were believed to be hysterical, Ulcer's were caused by stress, not bugs that can be killed by antibiotics!
    We must all seek our own higher authority to accept this illness as best we can and to ignore the many who would brand us with some kind of Scarlet DSM code. My free advice is to stay away from any Doctor or person who does not believe in this real illness. I know this easier said than done. I have been chipping away at the growing chip on my shoulder for ten years now. :|
     
    justinreilly likes this.
  8. alex3619

    alex3619 Senior Member

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  9. gregf

    gregf Senior Member

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    Sydney Australia
    I think we should not be down about our prospects.

    I am pretty sure the scientific answers to ME will arrive sooner then later. Then the press will turn on Weasel and his cohort and we will be able to begin the process of legal compensation. That may take years but it will be worth it. Think of the court cases against the cigarette companies.

    I think our politicians do know much about the crime called "CFS". And when there is medical backing they will turn on and force better legislation against psychiatry and medical abuse.

    I think that not only Weasel, but the whole rotten cult that is psychiatry is now in trouble. It will be replaced by a new brain science that reverses Freud's mistake that mental illness is caused by the patients thoughts.

    Just take note of how you have been mistreated. Take notes, take voice recordings when permitted.
    We will have our day in court and we will have justice against these criminals.
     
    overtrain likes this.
  10. user9876

    user9876 Senior Member

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    I know that people have talked a lot about the insurance company UNUM but I don't have any experiance of them. It did occur to me that if they treating ME as a psychological disorder to avoid paying out too much money they are clearly at risk of being sued as our knowledge of ME grows. They also just risk paying additional payouts.The risks are much higher if they are implicated in stopping other research.

    After ENRON the Sarbanes Oxley lay was passed in the US which says that companies must declare all significant risks to shareholders. With the rituximab trials I was wondering what the size of the risk of increased payouts and being sued is for UNUM. Sarbanes Oxley is an interesting law in that it allows for prison sentences for company CFOs who fail to report accurate accounts.
     

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