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Two diseases that take advantage of IT in order to create social awareness

Talks about two very painful diseases which cause fatigue and other debilitating symptoms, have been going on for a long while. However, due to their silent nature, they can´t be properly identified by the Administration and the Health Services.

It is a known fact, for instance, that the singer Joan Manuel Serrat organised a concert for those who suffer the disease in Barcelona. Or that the Mexican artist Frida Kahlo, as it has recently been found out, suffered a chronic ache that at the time could not be adequately diagnosed and that it turned out to be one of these illnesses.
We are referring to the Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM). On a daily basis, sufferers give us an account of the disease that describes its current situation in Spain and that is as intense as the following:

“Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) sufferers carry two loads: they experience an illness that is terribly debilitating and also prove that they are ill. The World’s Health Organisation (WHO) acknowledges these diseases and Spain underwrites its directives, but many doctors still ignore them. Why? They say that CFS and FM don’t exist, that they are a form of depression. Depression is a real disease to them. But why do they accept depression and not CFS or FM? When someone pretends to be ill in order to receive an allowance, depression is more advantageous: nobody questions that depression exists; you receive a disability pension and the doctor even recommends that you enjoy yourself. But beware of going out, sufferers of CFS or FM! They say: “They can’t be that ill”. Just as if you were going to suffer less if you stayed at home!”

This adverse attitude has driven patients to make use of the new IT technologies as a communication channel, in order to educate and mobilise the public in support of their battles with legislation, seeking recognition. We are perhaps witnessing the origin of a new social movement.

In Catalonia, for example, more than 135,000 people have signed to support the “Iniciativa Legislativa Popular” or ILP (Popular Legislative Initiative) for the treatment of Fibromyalgia (FM) and the Chronic Fatigue Syndrome (CFS). Even though the legally established deadline to collect signatures has not expired, these triple the figure required to file the ILP with the Catalonian Parliament. Besides, the initiative is supported by institutions, personalities belonging to different spheres like Serrat or Luis Llach, Rosa Regás and Marina Rossell amongst many others, and by more than a hundred institutions from a variety of sectors; international scientists who work in the research and the treatment of these diseases have also provided special support to it .

What are FM and CFS?

Fibromyalgia (FM) is a disease whose cause is unknown (like 67% of diseases defined today); its main symptom is chronic widespread pain that is located in muscular, tendinous and articular areas. Fibromyalgia is the most frequent cause of widespread pain.

The official definition of fibromyalgia was established as a result of the Copenhagen Declaration, which formally recognised the syndrome in January 1993 to the benefit of the World’s Health Organisation. The ache that fibromyalgia causes is unpredictable and changes from day to day. This pain affects many parts of the body, such as the shoulders, the hips, the legs, the arms and even the muscles of the eye. The sufferer feels exhausted all the time; the pain can be debilitating. Besides, fibromyalgia patients sleep so lightly that they never get to fall asleep deeply enough to rest and repair their body.

The Chronic Fatigue Syndrome (CFS), a disease which has been classified by the WHO as G93.3, is an organic, multisystemic and chronic disease. It affects the immune, cardiovascular, endocrine and neurological systems and causes symptoms like severe chronic fatigue, substantial loss of memory and also of the ability to concentrate and analyse, disorientation, unrefreshing sleep, intolerance to physical activity and a permanent flu-like sensation amongst other manifestations. Serious disturbances in the blood pressure, as well as in the orthostatic balance, together with a considerable reduction of the blood flow to the brain and of the ability of the cells to maintain their regular consumption of oxygen, have also been observed. However, the external appearance of the sufferer does not reflect the disease, as it’s normal.

The Basque Association for Awareness of Fibromyalgia, “Gaixoen Ahotsa” (in Basque), has created the award “Premio Nacional de Investigación de Psicología en Fibromialgia, Celeste” (National award for the research in psychology applied to Fibromyalgia), with the purpose of recognising and maximising the investigation and the psychological work which is being done in the fields of Fibromyalgia and Chronic Fatigue Syndrome, in order to develop and broadcast the knowledge of these diseases.
The award will be presented on Thursday 17th Jan, 2008 at the Palacio de Congresos (Conference centre) Europa in Vitoria. As a way of leveraging this event, the Basque Association has organised a professional conference on psychology applied to fibromyalgia, contacting experts in the field who have already confirmed their participation.

There will also be a roundtable about the topic “Experiences of Psychological Intervention in Fibromyalgia”, for which four experts will deliver a 10-minute presentation based on the different programmes and experiences of psychological intervention in their work centres or associations. Following the brief presentations, there will be another roundtable for the speakers and the professional audience.

For more information on FM and CFS:

Translation by Elena Robles
on 23/07/2007
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