Posted on May 11, 2014 by edu
THIRTY YEARS OF ABANDONMENT!
MAY 12, INTERNATIONAL DAY OF CENTRAL SENSITIVITY SYNDROMES (MIALGICAL ENCEPHALOMYELITIS / CHRONIC FATIGUE SYNDROME, FIBROMIALGIA, MULTIPLE CHEMICAL SENSITIVITIES AND ELECTROHIPERSENSITIVITY)
Clara Valverde, President LigaSFC
May 12 is the International Day of Central Sensitivity Syndromes (SSC): Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (MS / CFS), fibromyalgia (FM), Multiple Chemical Sensitivities (SQM) and electrohypersensitivity (EHS)).
This year is an anniversary of special relevance because exactly 30 years ago the EM / CFS epidemic was uncovered in Incline Village, in the USA. Already in the 1930s and 1950s, epidemics of ME / CFS had been discovered in England, Iceland and the USA. But it was not until 1984 that it was determined that it was a disease that affected a large part of the population, that it had an immunological origin and that was caused by viruses such as Epstein-Bar or cytomegalovirus.
The politicians were not (nor are) fools and they realized the possible impact and cost of this disease and did everything possible to hide it, deny it or say it was “story.” In short: they refused and refused to treat this disease as such, even though it is recognized by the World Health Organization. The first 10 years of the EM / CFS epidemic are well documented in the book “Osler’s Web”, in which the author, Hillary Johnson, in 700 heartbreaking pages, exposes all the sabotage carried out by governments and administrations to any attempt, by doctors, researchers and activists, to develop useful research and treatments. This book is only about the first 10 years of the epidemic. And we already have 30.
Internationally, the motto for International Day this year is “30 years of abandonment” and will be commemorated with demonstrations in cities around the world denouncing 30 sabotage of governments, 30 years of lack of training of doctors, 30 years of almost no research, 30 years of millions of sick people abandoned in their homes and in their beds without any help, 30 years of lack of education to society about the existence and nature of MS / CFS, 30 years without treatment or pensions, 30 years of false promises, 30 years of social rejection, 30 years of suffering day after day and premature deaths. 30 years of millions of lives lost.
30 years We have advanced? Our partner Robert Cabre writes that we have worsened institutionally http://robertcabre.com/2014/05/08/vuelve-el-12-de-mayo-un-ano-mas-y-no-todo-sigue-igual-empeoramos -institutionally/
We totally agree with Robert but we want to add that the sick have made progress in our political consciousness. They can no longer manipulate us making us believe that our diseases are all “mild fibromyalgia” and that we have to take harmful and prohibited medications such as Lyrica. We know that MS / CFS is an immunological disease and that most of us also have Multiple Chemical Sensitivities. We are no longer ashamed to go outside with a mask or negotiate environmental control at home with our families.
We no longer accept the macho treatment of most of the so-called “experts” in the Spanish State or their scams with irrelevant tests, doctors, most rheumatologists, with very intimate relationships with pharmaceutical companies (although we know that rheumatologists are not the specialists who They know about these diseases: we need immunologists and specialists in environmental medicine).
These rheumatologists of the Spanish State have organized a kingdom, a great business, diagnosing “mild fibromyalgia” to patients with MS / CFS, SQM and other pathologies. And those of Catalonia that are related to the administration were rewarded with the direction of the “fibroparkings” (the sad product of our well-intentioned ILP in Catalonia in 2008) in those who medicate (dopan) with anti-depressants and Lyrica, and they do Cognitive-Behavioral Therapy and “educational” groups so that we feel guilty of our outrage that they consider as “negative thinking”, thoughts like: how am I going to pay the rent? What will happen to my sick son? Where will I find the money to pay me some good analytics and thus know how I have the immune system? Who is going to help me get out of bed?
On May 12, in cities in Europe and North America, patients who can get up will leave with empty wheelchairs with the names of those who have died of ME / CFS.
In Madrid, on May 10, companions will go to the Puerta del Sol to become visible and protest the abandonment of the extremes that SSC sufferers live in the Spanish State.
What are we going to do in Catalonia on May 12 the SSC activists of LigaSFC and ASSSEM? Well, we will continue in bed recovering from the great effort that has been to make a crowdfunding to follow the important research on the immunology of ME / CFS, research for which we have had to organize the financing of patients, because administrations and other institutions They deny us the minimum rights of people who are sick of other diseases. With this research, the patients have said that “Yes, you can”, even if we pay a high price for the effort. And we thank those who have not abandoned us: generous friends and friends, some relatives with conscience, the companions of 15M and the Consell de Collegis d’Infermería de Catalunya without whom this crowdfunding would not have been possible. http://www.asssem.org/2014/04/para-el-colectivo-de-afectados-de.html
Personally, I am going to spend May 12 without being able to get up and remembering that 30 years ago, I got MS / CFS from cytomegalovirus. 30 years that are reflected in the book Well you have a good face. Chronic Fatigue Syndrome. A politically incorrect disease http://angelsmcastells.com/2009/05/09/clara-valverde-pues-tienes-buena-cara/
30 years that have turned me into a @enfermarebelde
All my love and support to my colleagues and fellow SSC patients.