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To research and improve the quality of life of people affected
Posted in News.
– 10 May 2013
Read the article at Senses Iriscaixa (26 March 2013)
The AIDS Research Institute IrsiCaixa, promoted jointly by the Obra Social "la Caixa" and the Department of Health of the Generalitat de Catalunya, and the Institut d'Ciències Investigació in the Salut Germans Trias i Pujol have led a study that has identified eight molecules that could serve to improve the diagnosis of Chronic Fatigue Syndrome (SFC).
Researchers have demonstrated alterations of this group of molecules in individuals with CFS, that appear to be associated with a poorer immune system functioning.
The research represents an important step, now since the diagnosis of this disease is based solely on the evaluation of their symptoms. However, scientists stress the need to confirm the results by larger studies.
The results, which have just been published in the Journal of Translational Medicine, may improve understanding of a disease that is estimated to affect Spain 1 in 1.000 people.
The work has enjoyed the cooperation of the research group in Chronic Fatigue Vall d'Hebron Research Institute (VHIR) and Tarragona SFC Clinic, and supported by various associations of people living with CFS.
– 8 April 2013
Posted in News.
– 26 February 2013
ME / CFS as immune disease
Posted by Robert Cabré in Artículos, Commentaries, EM / SFC, SSC
≈ 1 comment
Quality of Life, EM / SFC, emerging diseases, invisible illness, Central sensitization syndrome
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome ME / CFS, as well as the rest of central sensitization diseases SSC, disorder is still controversial and can be diagnosed only after ruling out other causes, in this case the predominant fatigue.
This process generates a chronic social disorder due to the inability to maintain the professional tasks, social and family, especially in the stages three and four. Reviewing the extensive literature available on recent multidisciplinary its etiology and treatment, shows that there are two main opposing positions, one that includes, for their comments psychosocial, as a psychosomatic illness and another that relies, by analytical observations, in the field of immunology.
The current etiologic hypotheses are based on factors predisposing, precipitating and perpetuating factors, but the pathophysiology remains unclear although the viral origin, that the retrovirus XMRV esperanzaba, is now largely discarded.
The assessment of the theories of fouling and environmental pollution and resource-therapeutic elimination diet and, are not even considered by conventional medicine, weigh ser, a potential cause and offers improvements in quality of life. This fact is not valued, the difficulty, academic skepticism and complexity in finding funding for the study of these diseases, despite individual and social costs representing.
CFS patients require a multidisciplinary approach for many different problems affecting them, fact that is not covered in addressing these diseases SSC. This approach by management and multidisciplinary care, require coordination between different specialists, focusing on the field of immunology and toxicology mostly, instead of rheumatologists, internists and psychiatrists, who have demonstrated their inability to meet and join with the problem and the difficulty in coping.
Nowadays, is no effective curative therapy for patients with chronic fatigue syndrome, The same occurs with other diseases SSC. Cognitive Behavioral Therapy (TCC) and graded exercise therapy (GET) currently have a beneficial effect doubtful, not accepted by patients and highly discussed, despite attempts to justify scientifically by those who practice professionally.
The goal of treatment is now more focused on improving the clinical, the attempt to maintain the functional capacity and quality of life by addressing symptomatic medications. Such treatments are maintained despite the failure and neglect of children. Its cause is not involving specific peculiarity and individuality SSC diseases. This hampers the development of palliative individualized programs, more focused and to the extent the intent to provide each patient with a high perception of improvement and physical and psychosocial adaptation as chronic, while solutions are not based.
Those affected feel orphaned health protection, in many ways. Perceive existing professional chaos to a disease centered on the edge between medicine and psychiatry. From perceive, as more professional attitude politically obscure interests and stakeholders profitably, that intentions and interests to consider and treat this disease as such, a chronic and actual biologically, and highly debilitating. From the psychiatric manifestations, to be recognized as manifestations secondary to a chronic primary, usually as a result of treatment of patients, which in many cases, is vexatious and marginal as widely manifested most affected.
There is an international conspiracy of sick, there is only a discredit to the professionals. "
Proof, is that it is the only disease that manifests socially with international conflict and associative, confronting health professionals among them and among the affected. Such conflict of relationship is due to stigmatization and mistreatment by patients, mostly, by health and social institutions. Acts as repeatedly reported to the competent authorities and that does not lend the slightest attention.
Providing funding for research is not only necessary, is imperative, to identify and correctly diagnose correctly diagnose the causes and those affected, regulating the approach and management of patients by creating unified adequate records and the healthcare system, instead of the current attitude of health policy that not only denies the existence of such diseases, if not diluted in the primary care centers, being treated by a professional, mostly, malformed in these conditions and that pressure overload them and claim the profitability of healthcare institutions to privatize.
Those affected by SSC, such as Fibromyalgia and ME / CFS, despite being listed by the WHO as real diseases with specific sections, are not health systems. This creates a lack of legal protection to not be seen as chronic disabling diseases and unfairness that surpasses the basic rights of access to health, recognized by the constitution.
The most curious of these facts and mystifying is that those affected, despite the official views provided by the center for disease control CDC Atlanta, which historically has advocated psychosomatic theory, from 1990 found in the annals of medicine, publications that guide the ME / CFS to the field of immune deficiencies, so i attached as references attached. Studies that have been totally ignored, even when the focal points of these diseases were located on level hospitals 3, with all the technology for research at your fingertips.
Posted in News.
– 11 February 2013
L'exposició CARAM! A STA. REPOSITORY.
The itinerant exhibition dels 25 sample pictures on the Fibromyalgia and Chronic S.Fatiga WOOOHOOO! landed in the town of Sta. Withoma des of the day 25 de gener al fins 15 Febrer at the Civic Centre Riu, Street Lluis Companys,9 very close to the City of Villa.
The room is very spacious and very well prepared for exhibition, because it was freshly painted and had many foci, rightly illuminating each frame exposed.
The day of the Inauguration, We have with us, the details of the Mayor, Núria Parlon, Councilwoman de Salut, Women and the others that made us the honor.
They were very impressed by the quality of the exhibits and even more to learn that they were students who had made a study of art (Jordi Aligué i la seva esposa Anna), believed they were professionals who had. Ser to the Civic Centre a molt Cèntric, there were many people who were accompanying us and enjoy what they saw.
Carmen Agraeixo the West, president of l'Association de Sta Coloma i Tresorera of the Federation, have done very good job and not having any problems at the time of installation and inauguration.
This exhibition will follow his path, there are two new associations that are being prepared to take it to its population. Forward !!!!
– 27 gener 2013
We stayed at the College of Physicians of Barcelona on 23 January to attend the ceremony of the presentation of this study in which, Our association collaborated with members who participated in it.
Spanish is the first epidemiological study to analyze comprehensively the impact of family, labor, social and economic development of our country along FM,besides being one of the first examples in Europe.
The Foundation FF goal was to learn about the impact that produced the sick and their families and this prompted this study where researchers collaborated, Centres sanitaris, technical centers across the state and institutions such as Fundación Pedro Tarres, Salut Mar Parc in Barcelona, H. Clinic of Barcelona, HHGregorio Maranon de Madrid, The Provincial Council of Barcelona and the Fundació ONCE.
In the Presentació taula estaven: Dr. Carbonell Medic from the Foundation PresidenDr Dr. Michael Vilardell president of the College of Physicians (Science Committee will form part)FF president Emilia Altarriba, Pull. Rosa Valles on behalf of the Government and Dr.. Antonio Collado, Scientific Committee and one of the researchers who told us how the study was done and the results.
El Dr. Col talked of the Scientific Study of FM and repercussions within the family, social, Economic and labor through the foundation and the top of it, el Dr. Carbonell.Dr
The sample was made in different municipalities:
1- Of 20.000 people ( 11 Centres )
2- Of 20.001 a 100.000 people ( 11 Centres )
3- Of MES 100.000 people. ( 13 Centres )
In health centers and in each Autonomous Community.
530 but bore the study, 375.Mixtures of fer 6 ask pads, demography, llar, family, work…
96% gifts, age 51'9 years, 75% Casades, educatiu nivell elemental, professional services, industry…, symptoms from the 37 6'6 years of age with a delay in detecting the disease, time Evolució 10 years 67% Muscular-esquelètic of trastorns, 35% psicopatològics, digestius… and a very poor health.
Family situation and economic
59% difficulty with partner, 44% need help house, 27% someone has changed jobs to help the family member, with economic losses. An average reduction of 504 € and 230 € per month with extras.
93% have been working an average of 23 years, 70% many difficulties, 50% amb labor absentisme,63% notify the malaltia, 30'4% Make adjustments to work, 19% canvien d'company. Two stubborn is the circuit will work fora quedant.
38% Mance health recolzament, and professionals note that comes out is 4'9.
27'5% Of disability tenen grau algú ( Pel demanad Sols 35% patients)
23% Invalidesa permanent, 50% recognition by the State Administration, 50% Judicial per Resolució.
26% i estan associades 20% trade unions
After the termination of this part, was a tribute to Dr.. Broggi, with a speech by the Emilia emotional Guilds, a video that will send Mr. Mayor Zaragoza elogiant the trajectory of Dr. Broggi over its 104 years and a family friend, birdsong played for his memory. Were two children who received gifts from a Foundation. Dr. Moisés Broggi was Honorary Member of the Foundation.
Posted in News.
– 25 gener 2013
Talk to Dr. càrerc. ALEGRE JOSEPH MARTIN,Metge internista, researcher and coordinator of the Chronic Fatigue Syndrome Unit at the University Hospital Vall d'Hebron in Barcelona, Membr4e University Professor and Scientific Committee of the Foundation FF.
– 12 December 2012
You can read it ALTEA-SQM
From the electro ASSOCIATION FOR THE RIGHT TO HEALTH, we are in the sad situation begin our journey with the death of a person affected by electrohypersensitivity.
Angela Martin took his life yesterday unable to or want to live with the great suffering that this disease occurs.
After a year of constant search for a clean electromagnetic pollution by family, Angela could not stand in recent days a new immission of this type of radiation in the home in which he had taken refuge. The symptoms returned strongly with devastating effects on your nervous system and Angela did not have the strength to resist.
Denounce the impassiveness and neglect of authorities who lived Angela who was forced to flee his home with high levels of radiation affected by a base station located 50 meter of the same. Given all this, Pinto authorities, where he lived, He received no response, despite their requests and your family. Also suffered from inadequate care health officials for not accepting the origin of their symptoms, treating the problem as psychiatric, who came to aggravate the situation and condition. This case is representative of the suffering that we are currently experiencing all concerned that we do not find adequate medical treatment or no institutional support to the uncontrolled increase of this type of radiation that make us sick.
The association recently created electro for the right to health, show our dismay at these events and launched a warning to the public, political and health authorities of the serious situation we find people with electrohypersensitivity.
We call for the urgent need to address this health problem generated by the massive uncontrolled electromagnetic radiation exposure, in a society where you can not find a free corner of this contamination, where wireless networks and mobile and wireless have invaded everywhere: Hospitals, Health centers, trains, metro, Bus, Schools, Universities, Addresses, etc., who are sick to many people losing their health, their work and home, without receiving any support and protection. This is despite the warnings of health risks, released in multiple scientific statements, EU recommendations, and the recent classification of possible carcinogen by the WHO. We also denounce the collusion and no statement to this serious public health problem by the political authorities, buckling under pressure from the lobby of the telecommunications industry and opt for economic benefits without addressing the negative effects of this technological wizardry on the health of its citizens, ignoring the application of the precautionary principle, that would help make the technology support healthy living.
We encourage everyone to organize electrohypersensitivity affected, autoapoyarse and fight for a decent life with health, to avoid re anyone found in the situation of Angel.
Angela, We will not forget, Passed Away pushes harder to keep fighting for life!
Posted in News.
– 4 December 2012
Aparicio de L'Anuari Propera MAGAZINE "Graphoanalysis" 2012, SPECIAL fibromyalgia
The study on fibromyalgia and graphology is about to be released . Here is the text of the journal's editorial graphoanalysis:
In this new magazine yearbook 2012, we are pleased to present a research paper on the characteristics of fibromyalgia grafonómicas, something that has been a real challenge because it was downright difficult to locate the particular grafonómicas of this disease via the handwriting.
For a more complete, First we integrated the research work done by Josep Juan and Miriam Buixeda Valldeperes, where in addition to explaining the basics of the disease, cite a number of cases we have classified as belonging to the more serious or advanced stage, and have been contrasted with the initial samples we arrived Gamo Marisol mediation, we classify as the initial phase or less affected, have also been so few as contrasted with the many other samples provided by Rosa Ortiz Ciges, observed here where all three categories or gravity feed.
It should be noted that the research team has worked under the supervision of medical equipment, members of associations which have been obtained graphic work samples, basically AVAFAS and AVAFI.
Mariluz Bridge and I GRISC in collaboration with and under the guidance of renowned researcher Marcos Faundez, We then proceeded and considering all the help provided by the aforementioned initial collaborators, to formulate conclusions preceded the peculiarities expressed complementary to the work and that are important references for dissertations proceed, and finally based on the study of the samples using graphology techniques, we welcome the special exhibit graphics and explanations fibromyalgia initial grafoanalíticas, and in late stage development and, corroborating findings grafonómicas the first of our partners in the phases mentioned, while reaching a body which is the classification defined in three phases and the graphic dominant each.
In tribute to the people who are doing research on this disease, Prof ª Mariluz Bridge has inserted a final note on Frida Khalo, diseased that has become a special symbol thanks to the impact of its artistic manifestations of the disease within, disseminated by distinguished scholars, achieving greater awareness of the same.
We thank AVAFAS, AVAFI and medical equipment, all patients who contributed to the research with his graphic samples, to GRISC-UAB, our scientific advisor Marcos Faundez, the co-authors of this Yearbook 2012: Pink, Josep, Miriam, Marisol, collaborators, for your vocation of social service and desire to alleviate the impact of this disease, and all who you are contributing to the study of this disease so that people affected can recover his happiness in a normal life.
Francisco Vinal Carrera
Posted in News.
– 23 November 2012