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“STUDIO-CHAPUZA” OF THE CLINIC TO HUMBLE THE SICK SQM AND EM / SFC…

Posted on March 9, 2014 by edu
… in which the professionals of the Clinic (Dr Fernández Solà, Dr Santiago Nogué and the psychologist Teresa Godás) demonstrate their low professional and academic level (bibliography of 20 years ago) and their great need to psychopathologize these organic diseases.
You can read Robert Cabre’s comments on the “study” and find the link to the article here:
http://robertcabre.com/2014/03/05/no-todo-es-cientifico-aunque-se-publique-en-ocasiones-es-un-insulto-a-la-inteligencia/
Some of the most interesting phrases in the article of these “experts”:
“The analysis of our results evidences scores
indicating psychopathology in all study subjects, but with
Significantly higher scores in the patient group
with CFS and SQM, which indicates serious psychopathology, which may have
implication both in the possible etiology of the disease and in the
maintenance of it ”.
What they are saying in this sentence is that we are crazy and that this is the cause of our CFS or SQM and the reason why the disease is maintained and we do not improve.
“Patients with SQM obtained an average score of 116 in phobic symptoms, which suggests a serious phobic condition in these patients” and “Another psychopathological symptom to be assessed in these patients is phobia, which indicates persistent responses of fear of people, places, objects, situations that are in themselves irrational and disproportionate in relation to the stimulus ”
What they are saying is that the fact that odors and chemicals bother you is a phobia. So why does Dr. Fernández Solà tell us and write in our reports (at 175 euros per report) that we should avoid toxic?
It is no accident that the Clinic have felt the need to publish this (it can not be called “study” for being a small fudge worthy of an ESO student) when in Can Ruti they are in the final stretch of a brilliant study on the immunological biomarkers of ME / CFS.
The fact that certain professionals dedicate their lives to trying to psychopathologize the EMSFC and the SQM shows a sick obsession for which we can recommend some treatments.
Fortunately, in Spain and especially in Catalonia, certain patient-informed associations (there it hurts!) Have more credibility than the Clinic team. And the sick MS / CFS and SQM have enough knowledge (yes, they already know that the Fukuda Criteria are of prehistory and that SQM are not phobias) so as not to believe the unscientific misinformations of certain professionals.
Most of the sick EMSFC and SQM are busy learning to live with these diseases and to be creative in the process. We love life. We know her. The same cannot be said of these professionals, small pathetic people.
We have work fighting for our rights, for those of children with EMSFC and defending Catalan public health within our great physical limitations. That is why we do not denounce these professionals (although if someone wants to do so, they will have our support).
These professionals do not realize that they have been left alone, that they are not important, that we ignore them. The times have passed when the sick EMSFC and SQM were not informed and respected these “experts” in white coats.
Regards,
Clara Valverde
Chairwoman
SFC League

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MAKE HISTORY, HELP YOU AND FUTURE GENERATIONS!

Posted on March 20, 2014 by edu
MAKE A SMALL DONATION FOR A GREAT CAUSE:

THE IMMUNE RESEARCH OF THE EM / CFS

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THIS YEAR IS THE 30TH ANNIVERSARY OF THE PRINCIPLE OF THE EM / CFS EPIDEMIC

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.

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FartesiFatigadesDelCatSalut

Posted on June 3, 2014 by edu
SUBMIT!

WE HAVE THE MACRORECLAMATION OF THE COLLECTIU RONDA!

THE AND THE ILLNESSES OF MIÁLGICA ENCEPHALOMIELITIS / CHRONIC FATIGUE SYNDROME (EM / SFC), FIBROMIALGIA (FM) AND MULTIPLE CHEMICAL SENSITIVES (SQM) WE CLAIM TO SERVEI CATALÀ DE LA SALUT (CATSALUTASASECHECHES)

3 years ago, the Col.lectiu Ronda de Abogados began investigating the possibility of placing a macro complaint to the Department of Salut of the Generalitat de Catalunya for the lack of care for patients with Central Sensitivity Syndromes (EM / SFC, FM and SQM). Due to all the changes in the regulations, the road map had to be changed and wait for clarification on how this project could be carried out without paying the unfair judicial fees. It has taken all these changes and legal complications.

Finally, the lawyers of Col.lectiu Ronda have found a formula: a “macro-claim” in which we need you, your family and friends to participate. Now we explain how.

But in summary, this claim is to state “THAT THE DEPARTMENT OF SALUT AND THE SERVEI CATALÀ DE LA SALT ARE SERIOUSLY BREACHING WITH THE CONSTITUTIONAL MANDATE PROVIDED FOR IN ARTICLE 43 OF THE SPANISH CONSTITUTION CONCERNING HEALTH PROTECTION… OF SICK PEOPLE THAT FATHER FIBROMIALGIA, CHRONIC FATIGUE SYNDROME AND MULTIPLE CHEMICAL SENSITIVITY ”.

That is, this claim is so that we can have health care for our diseases, care that today we end up having to seek in private health and in other countries.

Before explaining how to do it, WE WANT TO THANK THE 80 PEOPLE WHO DONATED 50 EUROS EACH ONE IN 2011 TO FINANCE THE LEGAL RESEARCH AND THE DEVELOPMENT OF THIS MACRO-CLAIM. Thanks to those who believed in this project, to those who promised to fight for our rights. Thanks with all my heart.

How can you participate?

To participate:

You have to live in Catalonia.
You do not have to be sick to participate. Patients, family members, indignant citizens, health professionals and anyone who agrees with the application document and wants the SSC patients to have fair treatment can participate.
Read the document Request Round (you can open it here)
If you agree, print the authorization (click here to open the document in CATALÀ, click here to open the document in CASTELLANO), fill it out and sign it.
Send it by post before July 15, 2014 to: Mari Martínez, Collectiu Ronda, Trafalgar, 50-52, baix, 08010 Barcelona.
It’s free. We thank the people who donated 50 euros because without their generous gesture, this project would not have been possible.
If you have questions or concerns, call Mari Martínez at 932682199.
Examples of the rights we demand:

– Health care relevant for these three diseases.

– That they do not refer us to hospitals where there are no specialists in these diseases.

– Clean spaces in hospitals for which we have SQM.

– That the expenses our treatments, supplements and masks are covered by Social Security.

– Early diagnoses.

– Analytics and relevant treatments.

– And a long etc.

Help us circulating this information to all sick people, your family, friends and neighbors. We need you all!

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ALL WITH MARIO!

Posted on July 11, 2014 by edu
TODAY REMOVE MARIO’S PENSION FOR HELPING OTHER SICK. TOMORROW WILL IT BE TO YOU OR ME?
Send your photo by email to aquatarragona@gmail.com to make a mural with all our faces for the press conference next Tuesday.

Jaume Cortés, lawyer of the Ronda Collective has sent us this important email.

Good afternoon everyone, hard times are coming, but we didn’t think that much!

Our fighting partner, Mario Arias, president of the AQUA Association of Tarragona, which surely many of you know, is and has always been a great fighter, open to all. It has been many years, like many other people, fighting for the recognition of the right of patients with SQM, CHRONIC FATIGUE AND FIBROMIALGIA.

Well now, in a RESOLUTION WITHOUT PRECEDENTS, they have withdrawn the pension because the ICAMS considers that helping the sick is like working!

It is a first step, the Generalitat HAS GIVEN US A FIRST NOTICE.

Next Tuesday we have a press conference in Tarragona to denounce the situation.

As we are scattered throughout the territory and it is very expensive (for health and economic resources) to make a physical claim, we propose that all those who want to support Mario, and all those people who spend their free time to help the sick, TO SEND US A PHOTO BY EMAIL TO MAIL aquatarragona@gmail.com and with all the photographs we will make a mural that we will put behind us during the press conference.

It will be a small detail, but it can give visibility to the matter.

Come, cheer up, we will inform you.

Greetings,

Jaume Cortés

According to the Institut Català d’Avaluacions Mèdiques (ICAM), developing an intense and outstanding activity in defense of the group of people affected by chemical substances and radiation and demanding the creation of a unit specialized in multiple chemical sensitivity to the province of Tarragona is sufficient reason to reduce the degree of disability of a person, despite the existence of medical reports commissioned by ICAM itself that support the persistence of injuries.

This is the situation faced by Mario Arias, president of the AQUA Association of chemical and environmental patients of Tarragona, to whom ICAM has reduced its absolute disability to the extent of total arguing that “there is evidence that the patient performs and actively participates in meetings and conferences as a representative of the AQUA association and other groups ”and of whom he emphasizes that“ he is dedicated to helping others affected and above all to litigate and defend the rights of those affected ”.

To denounce what we consider a true witch hunt against one of the most active and meaningful members of the community affected by Chemical Sensitivity, Mario Arias and the lawyers of the Col • lectivo Ronda will offer a press conference:

Press conference
Tuesday July 15
11.30 am
Rambla Nova 37, 3rd 2nd
Tarragona [how to get there]

“Of course, I do not see this patient trained for any type of work.” This strong statement is the phrase that concludes the medical report of Dr. Julián Márquez Sánchez (Neurologist and specialist in clinical neurophysiology. Ex-cap of the Clinical Neurophysiology Section of the Bellvitge University Hospital), issued at the request of the ICAM to evaluate if it was necessary or not to review the degree of disability recognized to Mr. Mario Arias.

In his report, Dr. Márquez considers that a Multiple Chemical Sensitivity Syndrome with “multisystemic involvement” and “neurocognitive disorders as well as respiratory, digestive, chronic fatigue, fibromyalgia and, more specifically, environmental intolerance persists” A clinical picture severe enough to fully justify the maintenance of the situation of absolute disability (unable to perform any work) than Mr. Arias had been recognized since 2002.

Against the criteria of this prestigious doctor who prepares his report at the express request of the ICAM, the evaluating body opposes a second medical report without identifying the name of the doctor who prepares it, where it is considered that Mr. Arias can perform “other types of work that do not involve efforts or exposure to chemicals, ”despite Mr.’s body Arias reacts virulently to chemicals as everyday as a perfume, air freshener or detergents that we usually use to wash clothes.

A moment nothing casual

The decision to review the degree of invalidity of Mario Arias comes precisely when a sentence is about to be executed that obliges the Generalitat of Catalonia to pay a significant amount for damages. The inability of the president of AQUA derives from the diseases contracted as a result of the exposure to harmful chemical agents that he suffered while working as a Public Works laborer in road maintenance. Injuries caused by the lack of security measures for which the courts have held the Generalitat de Catalunya responsible.

Consequences

The review of the degree of disability implies that Mr.’s pension Arias will be significantly reduced, going from 100% of the contribution base without taxation (absolute disability), to 75% and subject to contribution by personal income tax (total disability), in addition to a reduction in the amount of the surcharge that corresponds to it as a result of Professional origin of their ailments.

Notice for navigators?

The school Col • Ronda wants to denounce what we consider a witch hunt undertaken against a person who for years and despite the enormous difficulties that his disease poses has worked tirelessly to publicize this pathology and help all people who, like him They are also forced to fight tirelessly to access appropriate medical treatments and see their rights recognized as sick and sick. A person who, from his position as president of the AQUA Association of chemical and environmental patients of Tarragona, is one of the most active and meaningful members of the community affected by the Chemical Sensitivity in support of other sick and sick people.

It is absolutely intolerable for ICAM to review the degree of disability of a person before the medical criteria of a specialist in the field to whom the agency itself has commissioned one to report considerations as subjective and lacking in rigor as, for example, that “performs and actively participate in meetings and conferences ”.

In addition to judicially opposing the unjustifiable decision of l’ICAM, from the Round • School we want to express all our support and recognition to Mr. Mario Arias against attempts to demonize the attitude of those who face adversity and decide to stand up and help others to do so, even if this way of acting bothers the same medical and administrative bodies that continue to deny the recognition and attention they require in so many affected by chemical sensitivity.

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WITCH-HUNT VS SPANISH ME / CFS AND MCS PATIENTS! WE NEED HELP!

Posted on July 11, 2014 by edu
The Catalan (Spain) government has begun to withdraw the pensions of
those people with ME / CFS and MCS “who help people who are ill”.
The first one to lose his pension has been Mario Arias, president of
Aqua Tarragona, the association of people with ME / cfs and MCS in the
city of Tarragona.
Mario has been very ill for 20 years and had full disability since 2002.
Since then he had been helping other people through internet from his
bed who are sick with info and emotional support.

The goverment has taken away his pension alleging that if he can give
support to others, he can get a job!

How can you help?
We are asking people all over the world to send their photo by email
for the mural we are putting together for the press conference to
denounce this next Tuesday.
Please send your photo to aquatarragona@gmail.com (aquatarragona @ gmail.com)
You might also want to include some words of support to Mario.

Today, it is Mario. Tomorrow it will be you and me.

Thank you,
Clara Valverde
President
LigaSFC / EM
Barcelona, Spain

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THE SFC / EM LEAGUE PRESENTS THE BOOK “COM AMB LA TEVA SALUT”

Posted on September 14, 2014 by edu

The League of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis we are pleased to be drivers and to present this book on the privatization of
Catalan health and how it affects Catalans and Catalans.
The presentation will be next Tuesday, September 17, at 7:00 p.m.,
in Barcelona, Carrer Sant Pere Mes Baix 55 (metro Urquinaona).
More information about the book
See you on 17!
Regards,
Clara Valverde
President Liga SFC / EM
www.ligasfc.org

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“SINESTESIA” ORGANIZES A BENEFIT AUCTION OF CHILDREN’S CLOTHES FOR THE RESEARCH OF THE MS / CFS

Posted on September 24, 2014 by edu

He will donate everything he collects to ASSSEM to help us promote the study of our disease

The Art and Sewing Workshop “Synesthesia” has organized a charitable auction of children’s clothing, with the aim of donating all the full benefits obtained from the sale to ASSSEM. They want to support us in our objective to continue promoting and financing the research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, in collaboration with entities such as the IrsiCaixa AIDS Research Institute, and to be able to face the lack of public resources for the study of our diseases.

The auction will take place next Saturday, October 4, from 11 to 14 hours, at the premises of Sinestesia, Plaza Cardenal Cicognani, bjs 1, Barcelona (metro Linea I la Sagrera, Line V Congrés).

Original new garments, designed and made for children by the artist Montse Pérez, will be auctioned, with a starting price between 15 and 20 euros. We attach the catalogs of the garments to be auctioned.

“We believe that it is an initiative in which we can all participate without the need for large stipends, participants will take a fantastic modeling, for children, nephews, give a gift … and in the way we help people who because of the Health cuts are not going to benefit from the advances in research on their diseases ”, affirm Montse Pérez and Gemma Fradera, responsible for“ Synesthesia ”and director of events, respectively.

From ASSSEM we want to thank you for this initiative and we value very positively that solidarity actions arise with the patients of Central Sensitivity Syndromes from other areas of society.

We also encourage you to participate in this auction and we ask that you help us in the dissemination of this act.

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Press: Losing life

Posted on October 20, 2014 by edu
This is the first article in a series on the 200,000 Catalans living sick with Central Sensitivity Syndromes (SSC), pathologies such as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (MS / CFS), Multiple Chemical Sensitivities (SQM) or fibromyalgia , diseases recognized in Spain and classified worldwide for decades. Most of these patients have two SSCs at the same time, diseases that alter the immune, endocrinological and neurological systems. Studies show that up to 80% of those affected are disabled to carry out normal activities. They do not have access to public health because or there are no specialists in these diseases in their region (for SQM there are none in Catalonia), or, when there are, waiting lists are two years, and if they get access to a specialist , the analytics and treatments that are already available are not made (according to the few specialists, for reasons of cost). The few patients with SSC who have income, or family members with sufficient income, go to private healthcare paying between 6,000 and 9,000 euros a year.

Although in 2008 the Parliament of Catalonia voted unanimously for Resolution 203 / VIII, according to which health care would be provided to patients with SSC and to any other patient (including pediatricians for children with these diseases), it has not been complied with.

Most of the sick live unattended, isolated, in precariousness and inattention. Forgotten

Read the entire article here:

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PRESENTATION IN THE PARLAMENT DE CATALUNYA

Posted on November 16, 2014 by edu
On November 13, 2014, the associations of patients and health workers about the Central Sensitivity Syndromes, ASSSEM and LigaSFC, and the Collectiu Ronda de Abogados, made presentations in the Parliament of Catalonia to the health spokespersons of all political parties, establishing a new dialogue, process and commitment.

We made presentations on the current situation of the SSC patients in Catalonia, on the legal situation of these patients and presented a proposal for an organization for effective and public health care for the SSC.

Below you can read two of the four presentations that were made and see photos of the day.

WE CLAIM AND DENOUNCE

Parlament ligasfc November 2014