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9th Invest in ME International ME Conference, 2014 - Part 1: Autoimmunity and ME
Mark Berry begins a series of articles on the 9th Invest in ME International ME Conference in London, with a look at three presentations on autoimmunity
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Morning has broken

Discussion in 'General ME/CFS News' started by Quilp, Sep 18, 2010.

  1. Quilp

    Quilp Senior Member

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    and I am still alive.......

    My eyes in fear of residual light remain closed; incoherent noises pound my ears like waves crashing against the shore. I feel so painfully tired despite having slept for twelve solid hours. I can feel that sickly streak of exhaustion running through every fibre of my being, like a fast flowing tributary of hatred and hell. Suicidal tendencies dance a dance of death with promises so enticing, so enchanting, so hypnotic. I am a willing audience, I am always a willing audience.

    Breathing has switched to manual as I fall from thirty thousand feet. Forcibly, painfully, and with utter, utter, exhaustion. How did I get to this. The height of summer, but I cannot catch the warmth and even if I could I cannot hope to hold on. Instead I am left to shiver like a leaf on a stormy autumn night.

    I cannot dress myself because my skin will feel like it is being torn, like soft paper flaking under the lightest of breezes. Please don't try to embrace me, you don't Know how painful that would be.
    My skin, so raw, hairs standing on end, a sheen of salty humidity coagulating into beads of sweat on my forehead, upper lip and under my arms. A putrid stench smoulders a sickly scent into my room, my living coffin.


    I succeed in sitting on the end of my bed and open my eyes for the first time. Oh, would you believe me if I told you what a painful transition that was ? My heart beats at over 120bpm and threatens to go faster.
    My head hurts like some invisible force is pressing a sharp needle into the deepest recesses of my brain, such is the malevolence of an unseen psychopath.
    I focus on the wall in front of me, but I dare not allow my eyes to wander. I am close to passing out, I am almost sick, but it doesn’t come. This is inhumane, please somebody do something, anything.

    My muscles ache, like I’ve been beaten for longer than I deserved and more than I could endure. I grind my teeth and press my head against a wall. What have I done to deserve this. Why me, why now. In truth, after fifteen years that question has long since disappeared, like footprints in the sand long since washed away.

    Gravity, a heavy pull, like I’m carrying some invisible fiendish demon upon my shoulders, whose leaden tentacles wrap themselves like ivy around my being. If only I could see such grinning gargoyles, what murderous anger I could bestow.

    I feel every cell in my body crying out in pain, begging me to stop pushing beyond my limits, and beyond their endurance. I cannot escape the possibility that some unseen force is at work here, that some evil gathering is at play and lingers long after all logic has suggested to the contrary.

    This illness has gone nuclear doctor, your dysfunctional fire hydrant just will not do.

    Judy Mikovits and the WPI we love you all xxx
     
  2. muffin

    muffin Senior Member

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    Did you send this to CFSAC? They need to hear what it really feels like to live in our wretched bodies.

    I am so very sorry you feel like this. I just woke up from a three hour "dead to the world" nap. I had been "awake" for about 4.5 hours and really only wrote to a couple of my favorite people, threw things into the laundry, and that's it. I tried to do the Advocacy stuff, but the brain wasn't working anymore so back to bed. All I do is sleep and when I am "awake" I operate at only 30% capacity at best. Always exhausted - exhausted as in NO brain or body energy, or very, very little. So I know how you feel and I could sit and cry with you, for you. And for me too. I've been sick for 16 years so I have a year on you! I win!

    Stay in the fight. That's the best I can say to you now. I really do believe that soon they will get us the anti-virals and other meds to help bolster the immune system (the meds are out there already), and quite possibly other meds to help undo the damage to our brains and other organs. I'm NOT an optimist. But there is already so much research out there now and more stuff we don't know about.

    Take heart that you did NOT lose your creative abilities. What you wrote was so compelling. You captured what many of us can't. You nailed it, all of it. So that's why I ask that you send this on to CFSAC, regardless that the deadline was yesterday. Not to worry. Send it to them as we are sick and we don't and can't live by "normal, healthy people's" deadlines. Send this on.

    Since you seem to be a Brit, is there any other outlets for this "creative" work? Since it is "creative" (we know it to be reality), maybe you could sneak it past the Weasel and into one of the newspapers, TV stations/shows, or whatever the media outlets are in the UK. I haven't been back in so long that I'm out of the loop on all things UK. But you woud know. Always worth a shot.

    Anyway, i wish I could give you a hug, sit and cry a bit, and then chat about what the future WILL hold for us. I think our future is still out there and we will still have a nice shot at really living. Have faith. Sounds stupid, but you have to have faith that this is going to come to an end and you will have a more normal life. Warm hugs - 16 years sleeping.
     
  3. IntuneJune

    IntuneJune Senior Member

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    WOW!

    What brain power!

    You wove our feelings, emotional and physical, into such expressive fabric. WOW.

    June
     
  4. Quilp

    Quilp Senior Member

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    Hello Muffin thanks for your kind words. I hope that others will add to or change what I have written. I am not really that happy with it because I want the words to jump right out and hit those that need to be hit most ! Please don't worry I am ok, but I feel so inadequate. There are thousands of what we call the 25% group out there who are bedbound, some of whom have gone on to commit suicide at the dignitas clinic in Switzerland. What more do we have to do to make the scientifc community realise that this isn't about 'abnormal illness beliefs'
    Sorry, I am not making sense, I just feel so badly for them that words fail me. They never stood a chance.

    Take care, Mark
     
  5. muffin

    muffin Senior Member

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    Mark: Those of us that are in the bed for most of the day and night so understand the daily thoughts of suicide. I do. I admit it. You don't take a hyper, driven person and take them down and destroy every single part of them and keep it up, non-stop for 16 years. I really understand. And I have told my husband, friends, family that I would have done it were it not that they needed me in what ever little way I could and have been there for them. And I have 4 dogs and 5 cats and what would happen to them? Most of them were so badly abused, have broken bodies, odd behaviors due to the abuse, etc. so they need me too. They really need me. But oh God do I understand the suicide part.

    Again, we are making strides and those strides will kick the cr@p out of the Weasel and his establishment and you guys over there will get the same meds and treatments as we will get here.

    Hang on just a bit more. It sucks. But hang on just a little bit more. Now would not be the time to be done with it with so much that will be coming out soon and big time in the next year. From those "in the know" there are tons of "hints" that WPI is figuring so much out about us and how to treat us. They know we are in need of medications NOW and not just more stupid studies. And remember, Andrea Whittemore is the very sick daughter and she has been sick for 20 years. Now you know they will push hard so that this child (she's a young woman) gets better and has a more normal life. All of that benefits us too.

    Keep writing. Keep telling us how you feel as you do capture what many of us just can't. But stay in the game, it really is getting closer to all those wonderful meds and treatments that are for real and NOT the Weasel BS treatments. Those days of the Weasel (that friggin sociopath) are almost over. Watch and see if when he gets nailed for what he has done to so many terribly sick people in the UK that HE doesn't hang himself, literally, to avoid the prosecution, shame, and loss of total face.

    Warm hugs again - M
     
  6. leela

    leela Slow But Hopeful

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    Quilp

    Dark, mournful, beautiful poetry.
    May all your demons and ravagers be transformed into a light that carries you through and beyond this, you and all of us together.
     
  7. muffin

    muffin Senior Member

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    The WPI background hints I was looking for

    Mikovits said they also have new, unpublished data.. that could lead to treatment of CFS... we have immune system profiles &we can tell by the immune system how XMRV is doing the damage... we could have a diagnostic test to follow clinical treatment &show that peoples immune systems go back to normal... That data will be published by the end of the year, probably in a clinical immunology journal she said.
    ----------------------------------------------------------------------------------------
    Dr. Jonathan Kerr's work on Genes - this is critical to understanding CFS/ME:

    Microbial infections in eight genomic subtypes of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME)
    Lihan Zhang1, John Goudh1, David Christmas2, Derek Mattey3, Selwyn Richards4, Janice Main5, Derek Enlander6, David Honeybourne7, Jon Ayres8, David J Nutt2, Jonathan Kerr1,*
    1 St George's University of London, United Kingdom;
    2 University of Bristol, United Kingdom;
    3 Staffordshire Rheumatology Centre, United Kingdom;
    4 Poole Hospital NHS Trust, United Kingdom;
    5 Imperial College London, United Kingdom;
    6 New York ME / CFS Service, United Kingdom;
    7 Birmingham Heartlands Hospital, United Kingdom;
    8 University of Birmingham, United Kingdom
    Correspondence to: Jonathan R Kerr, Dept of Cellular & Molecular Medicine, St George's University of London, Cranmer Terrace, London, SW17 0RE, United Kingdom; jkerr@sgul.ac.uk
    Accepted November 3, 2009
    Abstract
    We have previously reported genomic subtypes of CFS/ME based on expression of 88 human genes. In this study we attempted to reproduce these findings, determine specificity of this signature to CFS/ME, and test for associations between CFS/ME subtype and infection.
    We determined expression levels of 88 human genes in blood of 61 new patients with idiopathic CFS/ME (according to Fukuda criteria), 6 patients with Q-fever associated CFS/ME form the Birmingham Q-fever outbreak (according to Fukuda criteria), 14 patients with endogenous depression (according to DSM-IV criteria) and 18 normal blood donors. In patients with CFS/ME differential expression was confirmed for all 88 genes. Q-CFS/ME patients had similar patterns of gene expression to idiopathic CFS/ME. Gene expression in endogenous depression patients was similar to that in the normal controls, except for upregulation of five genes (APP, CREBBP, GNAS, PDCD2, PDCD6).
    Clustering of combined gene data in CFS/ME patients for this and our previous study (n=117 CFS/ME patients) revealed genomic subtypes with distinct differences in SF-36 scores, clinical phenotypes, severity and geographical distribution. Antibody testing for Epstein-Barr virus (EBV), enterovirus, Coxiella burnetii and parvovirus B19 revealed subtype-specific relationships for EBV and enterovirus, the two most common infectious triggers of CFS/ME.
    http://jcp.bmj.com/content/early/2009/11/26/jcp.2009.072561.abstract
     
  8. glenp

    glenp "and this too shall pass"

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    Reason to Hang On

    Wow this is powerful.

    I am thinking, another reason to hang on- those that went before us, suicides, we can make a difference, we won't die of suicide, we need each other so we can help all those to come. Suicide would mean a fruitless life, we must not die of that. If anyone gets my gist please reword it for me

    God bless you all
    glrn
     
  9. muffin

    muffin Senior Member

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    I understand what you are saying GlenP. We do need to stay and fight for all those that are coming in behind us. Especially the YOUNG ones who are getting sick or will be sick soon. We have to fight for those children, teens and young ones. And we really are getting there. So much good stuff is going on and so many changes will occur within the next 6 months to a year. So, get mad. Fight. Fight so you can have a real life and fight so that those coming in behind us won't have to suffer in the same ways we have.

    It is beyond shameful that those that came before us had no hope. No WPI. No studies of value that meant they were moving forward. So, don't let their deaths be in vain. Honor them and the suffering they went through and we understand by FIGHTING. Double up your fists and fight!

    Did I get it right Glen???
     
  10. illsince1977

    illsince1977 A shadow of my former self

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    After 33 years with this I am more hopeful than ever. Beautiful words. Please hang in there.
     
  11. IntuneJune

    IntuneJune Senior Member

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    Quilp said: "Morning has broken, and I am still alive."

    Many, many a night when I have crawled into bed, I have had an overwhelming feeling....sorrow..... for my lungs and heart. I am sure they will not last the night. I can feel how hard, how difficult it is for them to continue to work.....I wish it were easier. My chest muscles are exhausted and they need a break, I wonder how they can keep working. And I think, they just might not. So, I say a prayer of thankfulness and gratitude for my family, for my life....and just wait.

    Then......

    Morning has broken, and I am still alive.


    June
     
  12. BEG

    BEG Senior Member

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    Nicely written post, Quilp. You should blog it. IntuneJune, we are thankful you're here.
     
  13. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I agree, i have only been sick for 7 years, but I found this to be very beautiful. At first I thought it was a "dark" poem someone was posting, but bravo to you for writing this!

    GG

    PS My ME/CFIDS/CFS is not as bad as this, although I did have a flare up last fall, which has gone back down, due to me limiting myself greatly! I just go to work, and other basic life necessities, not much of a life!!
     
  14. Cloud

    Cloud Guest

    Wow Mark! Your words stopped me in my tracks. Such eloquence perfectly conveying our plight. Not a word needs to be changed. I'm not sure exactly what the 25% group is, but I've spent enough years in the bed bound abyss to fully understand why some choose suicide. When I think of who we are doing this for...of course we want out of this hell and to get well before our lives are over....of course we want this to end for the children and those who follow....but I think mostly we owe it to those who just couldn't take this hell anymore. We need each other in this struggle to push back this darkness. I too wish I could give you a hug and sit and talk with you for as long as you like. Your words are very powerful Mark. Thank you for sharing them with us....please forward.
     
  15. Berthe

    Berthe Senior Member

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    Yesterday I cried my eyes out. My 20 year old son with Asperger syndrome held me in his arms. I told him that I was sick and tired of the horrible pain and that he and his brother actually saved me. Every day they save me, they give me hope, laughter and meaning. Your story touched my heart in the most profound way. I can relate to every word of it. Don't give up. You have to dream of being the wonderful writer you are.

    Love,
    Berthe
     
  16. jackie

    jackie Senior Member

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    mark...ive read your powerful statements about pain before...and i dont think your words could be improved...they tell our story perfectly.
    each morning when i wake up, i am both elated...and horrified....to find that i am still alive.
     
  17. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Powerful writing Quilp, thank you. I do hope that the WPI's benevolent research will find a way to reach into this strange and frightening world where we find ourselves and bring us back to safer ground.
     
  18. Merry

    Merry Senior Member

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    Very moving. I don't think it's easy to put into words what we experience so that others can understand. Thank you, Mark.

    Merry
     
  19. muffin

    muffin Senior Member

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    Everyone stays in the game so that we can kick some butt and get us and all others behind us the medications and treatments we need to get back to normal.

    We are making huge strides - so cry, scream, sleep and then get back up and fight!!! WE are going to win! Watch!!!!!
     
  20. Kate_UK

    Kate_UK Senior Member

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