TREATMENT FOR CFS/ME OR
HOW I GOT SICK AND TIRED OF BEING SICK AND TIRED !
After 18 years of having CFS, I have found a clinic where I have had my health problems looked at very thoroughly and where I am getting treatments which are beginning to give me my health back. As those of you with whom I have had contact with know, I have been, over the past few years, researching thoroughly all that is being done in CFS treatments. I have been in contact with researchers and clinicians and, having contrasted the approaches and ideas, I have found most of it quite discouraging.
In CFS we have gone from, a few years ago, having doctors tell us that it was all in our heads to them saying that, yes, we have something, most likely immunological, but that we should wait and see and learn to adapt with a bit of Cognitive Behavioural Therapy. If any medication has been offered to us, it has been antidepressants (which do not deal with the problem), non-steroid anti-inflammatory drugs or cortisone (both which deal only with symptoms, and not very adequately, and which cause other problems). We are being told to think positive thoughts and wait for the cure (it is very unscientific to think that a syndrome, which implies multiple causes and manifestations, would have one cure) while not telling us (perhaps many doctors do not know this) that if a faulty immune system is left to wait, the person will develop more serious health problems. So from being see as nut cases we are now, thousands of us, being parked with the wait advice. I am all for learning to live with what cannot be changed (after all, I am a Counselling professor besides being a nurse), but it would be crazy to do that having the knowledge that the more time that an immune problem is left, there are more possibilities of developing other problems. Not to mention wanting to put an end to the dismal quality of life that we live with.
To me, the priority was to find out, in detail, what exactly was wrong with my immune system. The tests that I had done up to this year (with a leading Spanish CFS expert who has followed me over the past 8 years), showed that I had a major CMV (1) infection and that the antinuclear antibodies (ANA) (2) were altered. My symptoms added to determine the CFS diagnosis: constant throat infections (two a month), flu-like symptoms everyday, joint problems, dizziness, major fatigue, a lot of physical suffering, a dismal quality of life and the rest of what all of you know too well.
As some of you know, research shows that in most people with CFS, a part of the immune system called the TH1 (3) response is not working well or much. This is the part that is responsible for killing off viruses and neoplastic cells (there are excellent explanations of the relationship between CFS and the TH1 response on the net by the American doctor Paul Cheney). I found a clinic in Cologne, Germany, called the Medical Centre Cologne (MCC) and the International Institute for Onocological and Immunological Research, which does very thorough immunological testing. (Did you know that for many immunological tests, they have to be done within the first 3 hours after drawing the blood?). Depending on the test results, they are able to do treatment. The International Institute conducts observational studies in the field of Oncology and immunology. They evaluate the clinical outcome of new and novel therapies which have been applied.
My test results showed appalling deficiencies in the TH1 response of my CD4 (4) positive lymphocytes (for instance, my number of natural killer cells, NK, (5) were at 3%) and major alterations in the flora in my large intestine (did you know that 80% of the immune system is in the gastro-intestinal tract?). Having read some immunology, I knew that this was a serious situation and I started treatment right away at the MCC (6). Besides wanting to avoid more serious health problems, I desperately wanted relief from how badly I felt and to get some sort of life back. I had previously informed myself and I knew that the International Institute for Oncological and Immunological Research was run by Profesor Dr. Robert Gorter, a leading immunologist and professor of Immunology and Internal Medicine at the University of California at San Francisco (one of the two leading medical schools in the world along with Harvard), as well as in other universities, with many years experience in treating immune problems and with a brilliant curriculum.
In week-long trips to Cologne, I started the main part of the treatment which consists of hyperthermia (6) sessions (provoking a fever under medically controlled conditions). This is an intervention designed to rebalance the immune system (the unbalance between the TH1 and the TH2 response of the CD4 positive lymphocytes) and it is used for numerous immunological problems as well as for neoplastic disease.
For more details of the treatments offered in Cologne, see the home page www.koelner-modell.de In between trips to Cologne (7) , I am doing the part of the treatment that consists of taking capsules and doing sub-cutaneous injections. I have looked into all these treatments and they do not entail any risks or side effects. The worst that could happen is that the patient does not improve as much as he or she would like.
In my case, just after the first hyperthermia treatment, most of my symptoms have gone. Gone are the infections, the muscle pain, the flu-like symptoms and the rest of it. It is a relief not to be suffering all the time. I am half-way of what will probably be 4 trips to Cologne and I am looking forward to regaining more energy and making sure that the immune system is in better shape by the end of it.
The cost of testing and treatment at the Institute is less than what is being charged by other immunologists for treatments which, frankly, worry me because they consist of stimulating the immune system. This could be risky or useless because if you stimulate a system that is already out of whack, it could easily increase the dysfunction. At the Institute in Cologne, they don't make promises. If after thorough testing they see that they cannot improve your particular problem, they will tell you so. The fact that I don't speak German has not been a problem in getting treatment in Cologne. At the MCC, there are staff members (including Profesor Gorter) who speak English and someone who speaks French. Other languages spoken there are Dutch and Flemish.
As a person who has lived with CFS and as an activist in the CFS networks, I wanted to share this information with you because I am sick and tired of seeing so many people suffering needlessly. It also worries me that we have become so accepting of the wait-and-see-take-antidepressants-do-CBT-have-positive-thoughts-and-rest line that the doctors have been feeding us .- Clara Valverde, Barcelona, Spain.
We decided to properly investigate the merits of this clinic in relation to ME/CFS and put procedures in place whereby Marie, a lady from County Dublin diagnosed with ME & Fibromyalgia, would travel to Cologne for treatment. Read Marie's story here.