International FM Community
In Spain, as in most western countries, there has been important progress in the recognition of fibromyalgia. As rheumatologists, we now find ourselves frequently diagnosing fibromyalgia—which has become the main reason for referral to our clinics. This diagnosis is now so commonplace that prevalence (the proportion of individuals in a group or a population presenting certain characteristics or cases at a given moment) has increased from 2.4 percent in 2000 to almost 13 percent in 2005.
This abnormal increase in FM diagnoses means that we have reached an undesirable point that does not convey the reality of the problem; it diminishes the enormous impact of the illness on people who have it, and it distorts the results of clinical research due to the limited quality of selected samples. Neither healthcare nor welfare systems are prepared (in Spain or elsewhere in the world) to bear the brunt of such an impact.
It’s the same situation in post-viral chronic fatigue syndrome or myalgic encephalomyelitis, which are frequently confused with the simple fatigability that logically accompanies FM and many other illnesses and disorders.
Unique Funding Source
The Fundación para la Fibromialgia y el Síndrome de Fatiga Crónica (http://www.fundacionfatiga.org/), a non-profit organization and pioneer in research sponsorship in Spain, through an agreement with La Caixa, an important Spanish savings bank, has launched the FibroCARD®, a VISA card which—at no charge to the user—allocates a percentage of all purchases to research into FM and chronic fatigue syndrome. This is an important initiative that has enabled us to establish various ambitious research programs that do not depend on the decisions of the politicians in power.
Two large achievements that have been financed with these resources are the DNA Bank of Patients with Fibromyalgia and Chronic Fatigue Syndrome, and the Patient Register. Both have established solid bases for the advance of thorough research.
The research team I lead has used these subsidies to carry out a wide genetic study of 8,000 patients and 1,000 healthy controls, analyzing as many as 90 genetic characteristics. The questionnaires completed by the study participants consisted of more than 100 variables, which—when combined with the genetic data for each sample—generated a volume of information that has taken us months to study, but from which we have now extracted the first conclusions. These will soon be published in the scientific community.
We have used special software to analyze the data obtained by our work. In a first analysis, when we compared the genetic results of the controls and the patients, we found no significant differences. I must admit that this was deeply disappointing. Subsequently, however, when we segmented the patients according to their levels of impairment, we were able to clearly distinguish between FM and chronic fatigue syndrome in the most severe cases of both illnesses.
These results were so astonishing and conclusive that we asked internationally acclaimed colleagues to send us samples of their patients in order to validate our data. Although we are currently still in the validation stage, an important Spanish company that designs and develops Microarray diagnosis techniques (http://www.progenika.com/) has already signed an agreement with the Fundación para la Fibromialgia y el Síndrome de Fatiga Crónica for the development of a biochip which will be known as the FibroCHIP®. This will enable us to discover the prognosis of the more serious cases of the two illnesses. It is estimated that the FibroCHIP will be available for sale within a year. This will be a very important step for researchers, as it will enable a better selection of patients to be included in our studies.
Teamwork, Present and Future
Both FM and chronic fatigue syndrome are known as “complexity illnesses”: illnesses that do not respond to traditional linear medicine, which follows the postulate of “You have Hepatitis C, because we have detected the Hepatitis C virus.” They are multifactor pathologies involving the central nervous system; experiences, emotions, and painful, tactile, visual, olfactory, and auditory stimuli play important roles in both diseases.
We are not the only ones attempting to find the cause of these illnesses. Many research teams are currently working with the same purpose. Perhaps the time has come to gather together all the information and pressure the pharmaceutical industry into fulfilling its social function by developing specific drugs for these illnesses.
I have always dreamed that one May 12 (perhaps next year?), all the associations, foundations and organizations—the ones currently fighting all over the world for the recognition and normalization of these illnesses—will organize conferences and simultaneous press conferences with the leading heads of the pharmaceutical industry. This media impact will be unprecedented in the history of medicine, but I am convinced that between us all, we have sufficient drive to achieve it.
This struggle for normalization (in which we must all play our part) has propelled me into writing a new book in Spanish entitled ABRIENDO CAMINO. Principios Básicos de Fibromialgia, Fatiga Crónica e Intolerancia Química Múltiple. This is part of my own modest contribution to provide patients and relatives, the social and work environment (and healthcare professionals, too, for that matter) with an up-to-date, realistic view of these illnesses.
I believe that we must move towards improving the quality of diagnostic criteria through the application of exclusion criteria, improving differential diagnostic protocols and stratification of levels of severity, and eliminating the clichés which continue to surround these illnesses. Patients have had to live through difficult, exasperating times, but believe me when I say that there are many of us working towards improving your quality of life as soon as we possibly can. Trust us.
Let me end with a quotation from one of the most famous Spanish doctors of all time, whose words continue to be as important as ever:
Science, despite its incredible advances, is not and will never be able to explain everything. It will continue to conquer new areas that today are beyond our understanding. But the frontiers of knowledge, however high these may be raised, will always have an infinite world of mystery.
—Gregorio Marañón (1887-1960)
Dr. Ferran J. García-Fructuoso is the founder of the Institut Ferran de Reumatologia and head of the Rheumatology Department at the Clínica CIMA in Barcelona, Spain. For more information about ABRIENDO CAMINO, go to www.lulu.com/content/405964