My name is Aoife Ryan. I'm 32 years of age and I've had M.E. for 7 years. The symptoms first developed after a long-term back injury and resultant major surgery.
I was diagnosed about 6 months after my first symptoms appeared. At the time I was offered no treatment, just told to "manage my lifestyle". I did stop going to the gym and stopped socialising but I continued working. I had to stop working eventually 5 years ago.
I have seen a lot of "specialists" in the last 7 years, for various symptoms I've had. Rheumatologist, neurologist, gastroenterologist, physiotherapist, gynaecologist, psychiatrist, haematologist, immunologist and more. All offered me things to treat symptoms (eg. Pain killers, stomach tablets, anti-depressants, exercise !!) but no-one offered me any explanations. They just said I had M.E. The immunologist told me my NK cell function was very poor and indicated I was seriously ill, but didn't offer me any treatment at all.
I have also tried many "alternative" treatments. Acupuncture, reflexology, bi-aura energy healing, homeopathy, massage, reiki, hypnotherapy, amatsu, Chinese medicine, faith healers, chiropractic, osteopathy, cranial sacral therapy, yoga, tai chi and many, many more. I think I've tried every alternative treatment in the book.
My illness has never been straightforward. Over the years I have had periods of reasonably good health where I could drive the car, do the shopping etc. I've never been well enough to work, even part-time. In the last year my health deteriorated at an alarming rate to a point where I was bed-ridden and sometimes not even able to feed myself. The pain was horrific. It was this that made me decide to go to Cologne. Having researched the clinic and spoken to Prof. Gorter I decided that it offered me the best chance of getting on the road to recovery.
I went to the clinic for the last two weeks of July 2004. Prof. Gorter was very friendly. He is a busy man though, and isn't always available to talk too. He did, however, do the initial consultation on the first day, take bloods, explain the therapies etc. and then he did give me the results of all my blood tests and told me how they were going to tackle each thing.
The hyperthermia sessions were very difficult. I got to a temperature of 41.3 but was very sick after the sessions. I fainted and was vomiting and had an awful headache. The doctors in the clinic really looked after me well though and I felt very safe. I was totally wiped out after the ozone therapy, but Dr. Stucker explained to me that this was because I had many infections inside me, and my white blood cells were being activated to fight them. By the end of two weeks I was really quite sick of having needles in my arm every day, it wasn't painful, just kind of tiring.
The staff made it as easy as possible though, and looked after my husband and me extremely well. Everything was explained perfectly. The language wasn't really a problem, though at times it was frustrating not being able to understand everything and communicate freely. I felt that everyone was there to help me get better. This is something I haven't experienced in an Irish hospital/clinic.
I feel that I have answers now that I have never had before. I know that there are several things wrong with me that I never knew about, and I have an idea about how to treat them !
I have to inject various medications for the next 6 months and may have to return for further treatment. Since returning to Ireland I have gone through a period of being extremely ill. I have finally begun to notice some improvement though, my pain has decreased and I have a little more energy. Prof. Gorter told me it would take about 6-12 months for me to notice any considerable difference so I have to trust him, and have patience. It isn't an overnight miraculous cure, for me at least.
The treatment is expensive. The cost of treatment, hotel, and flights for me was, in total, Euro 8,000. I do however feel, that, for me, it was money well spent. Prof. Gorter said he couldn't cure me, but he could put me on a road that would allow my body to cure itself. I believe him.
I am happy to speak to anyone with questions. My email address is available from the IMET.