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ME/cfs News coverage in Spain

Discussion in 'General ME/CFS News' started by Kati, Apr 9, 2013.

  1. Kati

    Kati Patient in training

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    http://sociedad.elpais.com/sociedad/2013/04/08/actualidad/1365440105_380953.html

    While they call it "chronic fatigue", the journalist has a good grasp of what it's like to live with this illness, and mentions the new paper from Spain.

    here is the google translation:

    Towards a diagnosis of fatigue
    Spanish researchers discovered eight potential markers of this disease, which may facilitate the diagnosis and treatment

    The study was published in late March, and begin to get requests from people who wanted the White Julià immunologist analyze your blood for evidence to support the conclusion that suffer chronic fatigue syndrome (CFS). "But we are a research laboratory, not clinical," he apologizes IrsiCaixa investigator and lead author of the study. Was first identified eight immune system molecules whose presence in blood can be interpreted as a biomarker of disease

    For those affected, the discovery goes beyond a scientific finding. Because chronic fatigue is unlike other diseases. "You can diagnose well, but the methodology for doing so is purely clinical, little quantitative" says White. Symptoms-crippling fatigue morning for more than six months, exercise intolerance, concentration problems ... - let you identify it, but the truth is that they spend on average ten years manifested until diagnosed, explains José Alegre, specialist chronic fatigue of Hospital Vall d'Hebron of Barcelona.

    In addition to health, the disease has a socio slope: if no diagnosis is more difficult to receive a medical discharge or recognition of a disability. Hence any progress involves a world affected by a syndrome of unknown origin, but that affects one in 1,000 people, according to some estimates-no prevalence studies, American studies mentioned Alegre with a 2% women aged 18 to 55 years affected.

    Arguably Montané Cristina, Barcelona 52, was diagnosed herself. "All my childhood memories are that I was tired, cold, constipated. I was not aware of disease because for me it was normal, "he explains. When she became pregnant with her first child discovered he was fine: "I realized that I could lead a normal life." The same thing happened during the gestation of her other two children, and the doctor began to rule out other pathologies. "In the end it was I who sought a list of symptoms and I said 'I fulfill all the". Montané had to stop working a decade. Now that her children are older has done it again, but at home and with flexible hours. "You need to start by educating physicians in this disease, there is no justification to continue displaying absolute misinformation about such a serious disease, complex and extensive" claims.

    The study by researchers IrsiCaixa Catalan (driven by Obra Social La Caixa, the Catalan Government and the Hospital Germans Trias i Pujol), published in the Journal of Translational Medicine, is novel because instead of analyzing a single parameter many patients studied all immune cells in a limited number of patients. It was thus found that "there was a pattern," says White. "The results tell us that there is an altered immune level," he adds, manifested in eight altered molecules. In addition to the potential that the diagnosis, the finding is interesting because it "could approach a best treatment that modulates the immune system and could change the course of CFS, which today is toward chronicity" adds Alegre.

    Carlos Gonzalez, who suffers from chronic fatigue syndrome since 2005, ironically: "It is a disease for the rich because I condemned to live as a priest. I one day I can be four hours in front of computer and three weeks after being crippled by a virus. You can not have stress, you have to take care of food, sleep well ... ". Luckily, he, who is now 42, was working in a bank in the Netherlands with a great salary, allowing him to undergo many tests showed abnormalities in London, the Netherlands and Belgium, in addition to participating in the study of Vall d'Hebron. "I spent a year and I thought it was dragging weariness. Then I took infectious mononucleosis and four weeks the virus did not disappear. I had it for three years. At first I was just going from bed to couch, "he recalls.

    "I was lucky that my bank closed, and I could rest indemnified us. Now I have a disability, but in Holland can take it off in a few years. " Carlos can not have schedules, but dares to make plans and make videos at home with your computer.

    "The studios do not want to do a large scale because they want to know how many are affected, they are more than seropositive. Doctors prefer to antidepressants, "laments Gonzalez. Montané matches, working with affected platform and ensures that is tired of seeing people get "crammed" of antidepressants and anxiolytics. "You end up making himself doctor," he sighs. She takes vitamin and mineral supplements, and all that "strengthens the immune system."

    "It is a very political, with many interests, and the drug can not be profit," says Gonzalez. "It frustrates that half of doctors believe it and half not, when a disease is recognized by WHO and 4000 studies. There is ignorance because it is a disease that do not study during the race, "continued Carlos, an outlier, as three out of four cases are female.

    Lourdes Martinez Attorney specializing in chronic fatigue, recalls a client who recognized pediatrician, "this disease I do not believe her." This physician with a brilliant record ended MIR, and, busted, took a year off was convinced that she was exhausted from work. He has not exercising.

    Martinez, who has already taken 50 cases, and has not stopped since. On his head is a guy who vomited on tests of stress because his father thought he was a bum or an engineer who is chronic fatigue triggered a toxoplasmosis. "They called yuppie disease because they were the first cases diagnosed. It is usually very bright people with good jobs, but fatigue often causes your brain to malfunction. Become disoriented or can not be concentrated in a reading over 20 minutes, "continued the lawyer that also led to a divorce client. "It is difficult for the family. They are very dependent although apparently be autonomous. "

    Torture passing the medical board

    Getting a disability is a long journey, expensive and often unsuccessful. "Administratively is almost impossible, and the court is very complicated but it is succeeding," rejoices Lourdes Martinez, a lawyer specializing in chronic fatigue. Social Security does not cover, for example, stress testing that does not improve the patient's health, but they are decisive evidence for the judge to disability. "The problem is that there are only two units specializing in fatigue, both in Barcelona and not easy to get a report of internists public health value that judges rather than the private," he adds.

    Ana Ruiz has estimated that in five years spent 25,000 euros disease among private medical evidence and legal advice. In addition, during the 18 months I've been waiting for the trial, did not receive any income. Neither salary or temporary disability, even strike because the company did not want to have a judgment dismissing.

    Martinez describes as "torture" the passage of its customers for medical courts. "Or do not believe them or humiliate them. And that is a result of the Social Jurisdiction Act 2011. Before if you were a 18-month low, began a record of disability. And now, at 12 months you get discharged. Leave people at the feet of the horses. Large companies may be sensitive, but to a small company's melted. "

    Before you get disability, Ana Ruiz went through six courts. "In all I felt treated like a criminal, humiliated. Even in a poor treatment caused me an anxiety attack that left me in bed for a week. "
     
  2. kauri

    kauri

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    This could be exciting. One of the things we need most is to encourage doctors to diagnose ME/CFS and bring those 80% of wandering sick people wME/CFS in out of the cold to access support.
    I like the approach, instead of focussing on one criterion, look for a characteristic group, a "fingerprint". I hope it pans out.
     

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