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A Dutch ME patient writes about the abuse they received by the medical profession as a teenager

Discussion in 'General ME/CFS News' started by Countrygirl, Mar 4, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    A patient with ME recounts her experience of abuse when a teenager by the Dutch psychogists whom Dr Esther Crawley emulates and foists on UK children, as,or so she claims to her audiences, they are so successful.

    Like the example below, when the UK child has been seriously damaged, they are dumped and ignored. In some cases at least, the Mum is then blamed for the deterioration as, 'Exercise doesn't hurt people with ME'.The same is happening in other parts of Europe.

    “Today it’s been 15 years ago since I came home from a Dutch rehabilitation centre. Valentine’s Day 2003, a Friday. I'm pretty sure I have never spoken about what happened during that time. In fact: I bet many of my friends don’t even know I was there. I’ve tried desperately to forget and repress everything, but that never works completely. The nightmares stay. The fear stays too.

    Great despair hit us in 2002. I've never been completely healthy in my life, but after a Pfeiffer infection in 2001 my health got so bad I almost couldn’t go to school anymore. We sought help from my general practitioner, who sent me to a well known facility in Nijmegen. So I went, and without any blood tests, or any other test I was diagnosed with CFS, and I had to join their specialised CBT/GET program because it was really promising. However, I ended up in the control group and had to wait. Waiting wasn’t an option back then, because I only deteriorated, and that’s how we got to the rehabilitation centre, they ran a similar program. They told me they took my illness very seriously and that their program consisted of slow increase of activity. They had a success rate of 80% for people with my ‘fatigue complaints’. They were really nice and I was willing to do ANYTHING to stop feeling so terrible, even if that comprised living at the centre during on weekdays for six months.

    And that’s how I got to stay in a room with three other teenagers, as a 15 year old girl. Everything hit me hard… things like the awful folk music from my neighbour, the talking, the activity of everyone… it was never quiet, not even at night. I thought I was too sensitive, too shy, and that because of this I couldn’t join in. I wondered whether the others had the same condition I had, because they could go on all day. I thought I imagined the loud music made me dizzy. Maybe my adaptation problems were mainly the result of being so far away from home. Of course that was part of the problem, but all the stimuli made it a hundred times worse. And those were unavoidable, you were never left alone and always forced to join others, you could never seek out a bit of quiet. I really tried to join in because I didn’t want to be left out (I was a teenager after all), but I was so exhausted and feverish and everything hurt, I just couldn’t do it. It was also forbidden lie down outside of the half hour resting time, so I regularly locked myself in the bathroom and lay down on the dirty floor for as long as I could, simply because I just couldn’t sit up anymore.

    It got way worse after the actual treatment started. I had to make schedules that consisted entirely of 30 minutes for the entire day, and every 30 minutes I would have another activity or a resting period. Each week more activities would be added and rests would be reduced. It took many of those half hours for the psychologists to tell me I must have had a trauma, because no physical cause was found for my illness. That trauma must have being really deep, because it had blocked my energy. I racked my brain, but I couldn’t think of anything. At physical therapy, I had to do the same thing over and over again in the same amount of time, but the second time I was always slower. The therapist told me it was all in my head, I thought I was ill and that was why it didn’t work, but I definitely could do it because my body wasn’t ill at all. The leaders were the worst. At least three times a day I was told I didn’t try hard enough. That I just didn’t want to get better. That it was all in my head. I was lazy. I was unmotivated. I should have shown progress by now, so I just wasn’t trying hard enough. I was weak. I cost society money. I was worthless. Just imagine, you would have to hear all that for three months, multiple times a day, when you’re just an insecure teenager. Psychologists, doctors, mentors, social workers, physical therapists, team leaders etc., they all told me this. I did EVERYTHING they asked me, and more. My regime was very tight and I didn’t once let myself stray from the program. Every Sunday evening, when my parent brought me back, I wanted to run away, I wanted to beg that I didn’t have to go back, but I didn't do any of that. I just conceded with a heavy heart. It was the only way to get better. I wasn’t good enough, so I had to try harder.

    It took 3 months, give or take a few days. Three months of hell and three months in which I deteriorated physically and my ability to do things continuously decreased. Mentally, I was convinced I actually was worthless. I could liken my experience to the extreme training a soldier has to endure, where they are being torn down before they are rebuilt. But all I did was break down. Then all of a sudden, out of the blue, I was told they couldn’t help me anymore because I wasn’t getting better. I begged them to keep trying, but no, this was the end. Every last bit of hope I had was smashed to the ground. Later I found out how they got to that promised success rate of 80%:

    All patients that stayed internally for more than three months were added into the calculation. Patients who didn’t last three months were not included. It was in their best interest to throw out anybody that didn’t improve before the crucial 3 month mark, so they could access more funding from the government to continue their work. So here I was, completely disillusioned and more desperate than ever, standing outside the centre on February 14th 2003. A part of me was secretly relieved that I wouldn't be bullied anymore, but I buried that feeling, because that was an essential part of the therapy, which would help me to get better. How naive I was.

    At home I could finally rest and with the help of my incredible parents I found my self worth again. Only the nightmares stayed - and still haven’t gone away. I freeze up at the doctors because I’m afraid they’ll tell me it is all in my head. I don't just think that, it actually happens on a regular basis, and every time my fears grows bigger still. I developed PTSD because of doctors and psychologists. Because of the centre.

    15 years later I’ve learned a lot more. Afterwards I started reading and researching and found similar stories. I educated myself and with the help of other patients, I found a specialist who was willing to help. Finally I got diagnosed with ME, a disease that has been recognised since 1960, but is still ignored in most countries. I’ve also got POTS, which creates autonomic dysfunction (which affects all systems you're not aware you have, like temperature and digestion).

    Due to the dysautonomia my blood doesn’t circulate properly and keeps pooling in my legs. I’ve got numerous abnormalities in my blood that causes inflammation values matching that of pneumonia, I’m being haunted by numerous viruses and bacteria, including Lyme disease, and even a muscle biopsy came back with a total of 7 abnormalities. Because of exercise intolerance, the CBT/GET therapy at the rehabilitation centre is extremely dangerous for ME-patients and made me sustain permanent damage. I repeat: Permanent damage. I never returned to the level I was before I went there and even now I'm getting worse every year. Thank goodness it’s a very slow decrease.

    Right now, I hope for recognition from the government and doctors. For good medical help. For money needed for research of ME, because there still isn’t any. I hope this will never happen to anybody ever again. All those hopes still haven’t come true. In fact, they seem further away than ever, because my specialist, the only one who took me seriously, is under scrutiny by the authorities because he dared to stand up for a young adult who was about to be forced into a similar therapy that I had to endure.

    Today I focus on the fact that it has been 15 years since I got released from the rehabilitation centre. 15 years to rebuild myself and to believe in myself again. I survived.”

    Monique
     
    maple, Sundancer, ScottTriGuy and 4 others like this.

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