ME/CFS IN CATALONIA, OR IS IT “CATATONIA”?

THE CATALAN GOVERNMENT WANT TO MAKE ME/CFS DISSAPEAR WITH ITS NEW PLAN Liga SFC www.ligasfc.org ASSSEM www.asssem.org On May 12, 2011, on International ME/CFS, FMS and MCS Day, the government of Catalonia (an autonomous region of Spain) launched (as a present?) its new plan: “Diagnosing and Treating Fibromyalgia and Chronic Fatigue Syndrome” (the text is only available in Catalan). The new plan is the first put out by the new conservative government that was voted in last November. We, the patients, are calling this document “The Fibro-Trap”. This document is not very different from the ME/CFS and FMS 1995 plan put out by the previous government, which was supposed to be a socialist government (a plan which the patient associations named the “Guantanamo Plan”, as it parked patients in Primary Care with no proper diagnosis nor treatment). This new plan, in all its Neoliberal glory (they are doing major cutbacks to public services), is aimed to make our illnesses invisible and also profitable for the government and for the pharmaceutical companies with which they have a close relationship (Pfizer, Novartis, etc). All of the authors of the document, except one, are rheumatologists who are well known for medicating patients heavily with banned medications, for getting plum appointments from the government and for collaborating and doing PR for pharmaceutical companies. The only non-rheumatologist amongst the authors is an internal medicine doctor who passes himself as an ME/CFS expert, Dr Jose Alegre (take note as he tends to show up at international ME/CFS events). The document is basically a strategy for making ME/CFS disappear. As you all know, in the UK, the government’s strategy to make ME/CFS disappear is to say that ME/CFS is psychosomatic. But here, in Catalonia (Spain), the government’s strategy is more “intelligent”. They don’t say that ME/CFS is not organic. But they want to make sure that people with ME/CFS are diagnosed with Fibromyalgia (FMS) and that they are “profitable” by being prescribed antidepressants, anti-seizure medications, opiates and muscle relaxants. And of course, Cognitive Behavioral Therapy. This they do by giving a long list of medications that doctors should prescribe. As for diagnosing: for FMS they suggest the old 18-point routine (very useless as it can get confused with many other pathologies, which is why in Spain, despite having officially a FMS prevalence of 2.4% in reality it is 14%!) and for diagnosing ME/CFS, they suggest the Fukuda Criteria. And as treatment for ME/CFS they offer CBT and GET. The document points out that the European Medicines Evaluation Agency has not approved anti-seizure medications for FMS but it still says that they should be prescribed for FMS. What? We are in Europe? Since when? There is nothing in the 74-page document about the immunological and viral aspects of ME/CFS nor any reference to any research of any importance since 1994. For prevalence they use the 1995 Buchwald document which says that the prevalence of CFS is 0.7%. Yet they say that in Catalonia there are no more than 20,000 people with ME/CFS, despite the fact that the population of this region is 7 million. As you have probably figured out, 0.7% of 7 million is 49,000. Yes, even in mathematics, Spain seems to be “different”.

The authors of the document and the Catalan Ministry of Health (Departament de Salut) are very familiar with the important research that our local retroviral lab, IrsiCaixa, has done on XMRV, and in which they have not only found XMRV in ME/CFS patients but they have also determined some important immune alterations.Yet the document makes no mention of this. Reading the whole document, one feels in a time warp, as though time had stopped in 1994. Yet this is not out of ignorance but out of a well-thought off strategy to try to get rid of ME/CFS, that very uncomfortable illness which so many governments do not want to deal with. Of course, ME/CFS patients in Catalonia are generally well informed after all the major campaigns and activities the associations have done in the past 6 years. So it will be hard for the government gather much support for this document. And we, the patients’ associations are working on our own strategies: 1. Doing a class action suit against the Catalan government for not attending ME/CFS patients properly. 2. Organizing for ME/CFS patients to be tested for their immune dysfunctions (even if they have to pay out of their own pockets) in order to have more evidence for the class action suit, for self-awareness, for being able to dialogue with one’s own doctor and for other purposes. 3. Continue to warn patients that doctors might try to give them the diagnosis of FMS when they have ME/CFS and to inform them of the harmful medications that they might be prescribed. We have been doing this kind of warnings in the past few years with very good results. 4. Continuing to inform and empower people with ME/CFS and to educate society in general. ME/CFS patients in Catalonia, Spain, refuse to live in “Catatonia” and refuse to sit idly while we die. We are taking control of the situation and taking our space front and centre.

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