E-health: to patients of chronic pain

Carole Robert: Our book "

Fibromyalgia

, patients want to understand is born of the desire to publish the report that we submitted in August 2001 in the office of Minister of Health, in a first interview that we had then obtained. We thought that he could not make any sense that publishing stories of sick patients who are at the center of our concerns.

We also wanted to stress publicly that fibromyalgia is a disease in rheumatology classified by the World Health Organization, which France tends to want to ignore, even to go against, contrary to what happens in other European countries.
Then, this book is also born of our weariness of having to justify our state, having to explain that 'yes, I saw what is the reality, I exaggerating anything, I was not seeking any profit, it is not in my head … '. Convinced then that if doctors could write a book about our pathology, we had no reason not to express our lives, especially as the Law of 4 March 2002, called "Kouchner Law ', we gave the opportunity. 'The patient could, even should speak' … !

Finally, it was time that we can talk soldiers Gulf fibromyalgiques estimated at 17 to 34% of soldiers deployed or not, in the Gulf. Publications internationally renowned scientists showing similarities between chronic fatigue syndrome, fibromyalgia and Gulf illnesses, we were right to ask questions about the similarities tracks mentioned.

Our book has enabled our organization to fulfill one of its objectives: the sick out of isolation. Indeed, we received over the past two months 4500 letters asking for information. These letters are accompanied by any evidence showing the size of the solitude of these patients misunderstood, so-called 'invisible'. Their expectations are high, rising by listening (we have heard to date over 1,200 patients) and our absolute sense that they can be understood better fight. A simple obvious …