My name is Elaine Curran. I am 28 years old and have M.E. for nearly 5 years, although I have had lots of health problems, including severe back problems and fibromyalgia for the past 9 years.
I was only first formally diagnosed with M.E. nearly 3 years ago. I have seen numerous Consultants for various symptoms over the past years, and I have tried every alternative treatment in the book. I had to stop working 3 years ago.
Like most M.E. sufferers, my illness has not been straightforward and I have experienced a number of setbacks, including Tonsillectomy, Campylobacter food poisoning and a relationship breakdown which resulted in the loss of my home, and having to move back with my parents. Although I have never been well enough to return to work, I have had periods of reasonably o.k. health. However, this has all changed since my visit to Cologne.
I am fluent in German and lived and worked in Bonn, near Cologne, ten years ago. When I heard about the clinic in Cologne, I decided I had to give it a try. I was lucky in that I have the language, and so I could communicate freely with everyone there. I also knew the city, and was able to stay with friends in Bonn, which meant I didn't have the extra expense and stress of hotels and eating out all the time.
Unfortunately, my experience of Dr. Gorter and the clinic in Cologne has been far from positive. I first met with Dr. Gorter in the clinic on Monday, July 19th 2004. Over the following two and a half weeks I had 4 hyperthermia sessions, 4 ozone therapy sessions and daily infusions. Dr. Gorter is an extremely busy man and travels an enormous amount. While I was there he was jetting in and out to Istanbul, the Lebanon, the States etc. It was very hard to meet him and he was always so highly strung. This unnerved me a little, but as I'm fluent in German, I was able to communicate with his colleague, Mr. Stuecker.
The hypothermia sessions were extremely difficult. After about an hour on the bed, all my glandular fever symptoms would really flare up and I would become so weak and ill, with a violent headache. I would be totally wiped out, but unable to sleep that night, because of all the symptoms and pain. Of course the weather did not help matters, as it was in the mid 30s with desperate humidity. I was also quite wiped out after the ozone therapy. The nurses were extremely friendly and helpful and took good care of me. Mr. Stuecker was also very good at explaining everything to me.
The results came back from the various labs in dribs and drabs. Unfortunately, some of my samples had been mislaid, so I had to resend them. At the end of the third week, when I had finished all my treatment sessions, I had an appointment for a final consultation with Dr. Gorter. My results had shown severe immunodeficiencies and a long list of fungal, viral and bacterial infections. At the final consultation, Dr. Gorter was supposed to give me copies of these results, a written report and prescriptions for the different medications I would be using over the coming months. However, when I reached the clinic that day, Dr. Gorter said he wasn't prepared. As he was flying out to the States the next morning, he asked me to come back 8 days later, on his return instead. Lucky enough for me, I was staying with friends for a while to recover some strength before flying back home to Ireland.
I was totally wiped out after the treatment. When I met Dr. Gorter on his return from the States, he was not overly concerned about this, and explained that it would take 4-6 months before I would notice a gradual decrease in symptoms. He advised me to keep in touch on a regular basis via e-mail. He felt that I would need to return in 6 months for a top-up treatment, but he was confident I would become well again. I was very satisfied with this and didn't realistically expect an over-night cure anyway.
The day after this meeting, I became extremely ill. I just felt completely toxic and extremely weak. My legs just would not carry me. I barely made the flight home 10 days later.
I continued in much the same way over the coming weeks, never really regaining any significant amount of energy or even returning to the low level I was at before Cologne. Then at the beginning of October, I really went downhill with ear and throat infections etc. It was like having Glandular Fever all over again. The widespread pain also became much worse. I felt completely poisonous as if every infection inside me had been re-activated. I kept reminding myself that Dr. Gorter did say it would take 4-6 months, and I told myself that maybe I needed to get really bad before I got better. I was finding it impossible to reach Dr. Gorter. He was either unavailable or away when I phoned the clinic and he was not replying to my e-mails, although I was e-mailing him very often. I also e-mailed Dr. Stuecker, but got no reply from him either.
I knew Dr. Gorter was coming to Ireland in the middle of November so I felt I had no other choice but to push myself to make the journey to meet him, and finally discuss my concerns. When I spoke with him after his talk that day, he apologised for not returning my calls, e-mails etc. and said he had been really busy and things had just built up. He seemed quite concerned that I deteriorated so much and thought that the infections might still be a problem. He said I should wait the 6 months (until February 2005) to see what happens, and then have the relevant blood tests repeated in Cologne to find out exactly what was going on. In the meantime, he told me to phone him in the clinic in a few days. He would have another close look at my file and maybe suggest something to help ease the symptoms.
When I contacted the clinic he was away again until mid December, so I had no other choice but to wait it out until after Christmas. In the meantime I went even lower than what I was. I was housebound and bedridden most of the time for the rest of November and most of December. I could not believe how much worse all my symptoms were since my trip to Cologne and most of all, how much my quality of life had deteriorated.
After Christmas I turned a corner. I was not bedridden all of the time anymore and I did not feel like my body was slowly dying. At least now I knew I would manage the trip back to Cologne to get the tests repeated. I had no intention of getting a second round of treatment at that stage, as I was so bad after the first round. It took me three weeks to finally get an appointment for February. I sent several e-mails and left several phone messages but Dr. Gorter did not return my calls. I spoke with the practice manager, the nurses, and Dr. Stuecker. Dr. Gorter was supposed to return my calls every evening but he never did.
Eventually, I got an appointment date for the 28th of February. I was assured by both the practice manager and one of the nurses that Dr. Gorter would meet me then for a detailed consultation. I was quite stressed out and upset at this stage at the lack of communication. But I was satisfied I would finally get to discuss things with him on the above date.
On February 28th 2005, I attended the clinic early in the morning to be told that Dr. Gorter wasn't there after all. He was away until later on that evening. I was absolutely fuming that my appointment had not been rescheduled if that was the case. At this stage, I felt completely messed around, and I was horrified at what appeared to be a complete lack of interest on the clinic's part.
I had a meeting instead with Eloy Pulido Cobian, a Mexican researcher in oncology. Mr. Cobian didn't know anything about my case, why I was there, or what tests should be redone. He even said he did not really know that much about CFS, as cancer was more his area. The whole experience was just terrible. Luckily enough I had made a list of all the tests which needed rechecking, so he took the blood and sent it off. I explained to him at length my entire situation since August and I made it clear that I was totally dissatisfied with the lack of after-care I experienced. I left a message for Dr. Gorter to phone me that evening and sent him a 'high priority' e-mail to the same effect. I heard nothing from him that evening. The next day I left phone messages and sent faxes marked urgent, but still got no reply. Eventually, two days later, after I had left quite a desperate sounding message, I heard from Dr. Gorter. I was appalled at what appeared to be a complete lack of organisation and interest on his behalf. I felt very let down, especially as I had paid thousands of pounds to a private clinic and put my trust in them. It is very stressful and upsetting for ill people to have to chase doctors like that.
My health is still very up and down. While I am not as bad as I was before Christmas, I have never returned to the level I was at before the treatment in Cologne. My quality of life has definitely deteriorated significantly since Cologne. However, I do not regret having all the tests done. At least they gave me some answers. Information is power. That has put me on a different road now.
I would be happy to speak to anyone who may have questions. My e-mail address is with the IMET.