SSC / CSS: INFORMATION FOR ENGLISH-SPEAKING COUNTRIES

The following two articles give an idea of the situation of people with Central Sensitivity Syndromes: Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromialgia (FM).

THOSE WITH CENTRAL SENSITIVITY SYNDROMES ARE EXCLUDED FROM THE PUBLIC HEALTH CARE SYSTEM IN CATALONIA (SPAIN)

By Gemma Garcia of the La Directa publication

December 12, 2014

The Colletiu Ronda Law Firm in Barcelona denounces the lack of services for those ill with Central Sensitivity Syndromes. In Catalonia there are more than 200,000 people who have these illnesses.

When you look up Fibromyalgia (FM) and Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS) in the Catalan Government’s web you will find a list of twenty hospitals in Catalonia that, theoretically, have specialized units to diagnose and treat these illnesses. But there is no mention of Multiple Chemical Sensitivities (MCS), which, until last September, was not officially recognized by the Spanish government. You will also not find Electromagnetic Hypersensitivity (EHS) which is not recognized in Spain.

These so-called specialized units do not have the specialists that were promised in 2008. In reality, there are only two such Units in Catalonia: one at the Clinic Hospital and the other at the Vall Hebron Hospital, both in Barcelona. But even so, Clara Valverde, Jose Maria Garcia and Genoveva Seydoux, along with thousands of other patients with Central Sensitivity Syndromes (CSS), have been denied access to these two Units because they do not live in the hospitals’ neighborhood.

Al the same time, there are patients who have never seen a specialist because the waiting time is more than two years, as it has been denounced by patients’ associations.

According to the Catalan Government’s Health Department, there are more than 200,000 people who have CSS in Catalonia. The majority of these have had to suffer a long pilgrimage to get a diagnosis, and those who have managed to be diagnosed, do not have access to relevant health care services.

The Collectiu Ronda Law Firm now prepares a legal complaint to demand that the government carry out its obligation of protecting citizens’ health, a commitment that was voted by the Catalan Parlament in 2008.

Besides all the CSS patients that now do not have the right to access the Clinic Hospital or the Vall Hebron Hospital, the Collectiu Ronda lawyers have found a very large number of CSS patients that have never been seen in neither one of the two Units nor in any other of the supposedly “specialized units”. The patients’ demands to be seen by a specialist have not been answered.

Only rheumatologists

These patients live with immunological, endocrine and neurological dysfunctions and, depending on the severity, many are totally disabled. It is because these illnesses are multisystemic that the Parlament and the Goverment were supposed to establish multidisciplinary teams able to treat and follow up properly “the more severe and complex cases”.

More precisely, the Government committed itself in 2008, to give each unit “specialists in internal medicine, rheumatology, neurology, psychology and all other necessary specialists” .But as the law firm, Collectiu Ronda, denounces, along with patients associations such as the Liga SFC and ASSSEM, the majority of these Units only have a rheumatologist. According to lawyer, Miguel Arenas, the Health Department “has just put a rheumatologist in each unit who might have or not, knowledge of these illnesses” and he adds, “the majority are rheumatologists who only work with fibromyalgia”. As we go to print, we have not had any answer from the Catalan Health Department regarding the make-up of these teams.

Genoveva Seydoux, who lives with MCS and ME/CFS, was told, on October 20, 2013, that she could not continue being a patient at the Clinic Hospital Unit. They referred her to the Joan XXIII Hospital in the Catalan city of Tarragona, because she does not live in Barcelona. The doctor she saw at the Tarragona hospital advised ¡ her “To go swimming to improve her health”, which outraged Genoveva as the chlorine in the pool would be very dangerous for her Multiple Chemical Sensitivities.

The team of lawyers at the Ronda Law Firm not only denounce the lack of trained professionals and units, they also argue that the law gives patients the right to choose their doctor for specialized care, something which is not being respected right now.

A year ago, Clara Valverde, who had been an Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS) patient for 20 years at the Hospital Clinic, was banned from returning because she does not live in that hospital’s area. So now she does not have a doctor any more. Her area hospital is Sant Pau Hospital, but there are no doctors there specialized in ME/CFS. Jose Maria García has the same problem. He is now supposed to go to Bellvitge Hospital, but there are only rheumatologists there. There is no one who can attend his MCS and ME/CFS.

Valverde complains that the majority of people who have a Central Sensitivity Syndromes in Catalonia are excluded from the public health care system and can only see a private doctor if they are able to pay for it. Which most patients cannot afford.

To obtain the very necessary medical reports for legal and work matters, the only option is to go to the private Barnaclinic. This unit is in the same space, with the same equipment and the same doctors as in the mornings, when it is the public ME/CFS unit at the Clinic Hospital, but which in the afternoons, turns into a private clinic and in which the patients have to pay 200 euros for a medical report.

Link to the original article: https://directa.cat/afectades-sindromes-de-sensibilitat-central-excloses-de-sanitat-publica

THE FORGOTTEN CATALANS:

JORDINA AND JORDI: “MISSING MY LIFE”

By Clara Valverde published in El Diario, October 10, 2014

There are 200,000 people in Catalonia (Spain) who are ill with Central Sensitivity Syndromes (CSS), category which includes illnesses like Myalgic Encephalomielitis/Chronic Fatigue Syndrome (ME/CFS), Multiple Chemical Sensitivities (MCS) and Fibromialgia (FM), illnesses recognized in Spain and by the World Health Organization.

These are multisystemic illnesses which alter the immunological, the endocrine and the neurological systems. Studies show that 80% of these patients are unable to carry out a normal level of activities of daily life

In Catalonia, these patients do not have access to public health care because either there are no specialists in their area (there is no doctor specialized in MCS in the Catalan public health care system).or, if there are, the waiting lists are two years long. If they eventually manage to see one of the few specialists, no relevant tests nor treatments are done. There are symptomatic treatments but none are prescribed nor subsidized by the government, as in other illnesses. The few CSS patients who have an income, or have financial help from family or friends, go to private health services and pay between 6,000 and 9.000 euros a year.

Although in 2008 the Catalan Parliament voted unanimously Resolution 203/VIII, which was to give health services for people with CSS as with any other illness (including paediatricians for children with CSS), this Resolution has not been honoured.

Most of these patients live unattended and isolated in a precarious situation. Forgotten.

Jordina is tall. But it is hard to tell because she rarely stands up. And you will not see her because she rarely leaves the house. This 35 year-old Catalan woman lives with Myalgic Encephalomielitis (wrongly named “Chronic Fatigue Syndrome”, ME/CFS) and Multiple Chemical Sensitivities (MCS) since she was 26. These illnesses started, for Jordina, with a long spell of infections, a product of the immune deficiency which is typical in ME/CFS. “It is as though my body weighed a ton. Even breathing is an effort and my mind is full of fog”, she writes to us. Jordina was a child psychologist before becoming ill.

On a “good day”, Jordina can get up for a little while to eat or wash. But the other days “I spend them in bed unable to do anything”. And she adds: “It is like a car that runs on very little gas, and when it runs out (like when a family member comes over for a short visit), then I have what is called Post-Exertional Malaise, which means that I am bedbound for days of weeks.

That “fatigue” which leaves people with ME/CFS in bed for days, weeks or even years, is unforeseeable and it does not resemble the tiredness that a healthy person has after running a marathon. It is worse. It is a total physical inability to do anything, except breathe, and even that, sometimes is hard. Jordina’s husband, 38 year-old Jordi, says: “This illness is there day and night, it does not take a break, it does not go on holidays. It is always present”.

Jordina, like so many people who have ME/CFS, also has MCS. So she cannot be in contact with any xenobiotics (any synthetic chemical compound which does not exist in the human body), like those found in so many products used in daily life like detergents, softeners, cleaning products, air fresheners, shampoo, after-shave, perfumes, paints, pesticides, fuels, pollution and a long etcetera. If she is exposed to any of these, Jordina’s body goes into a crisis in which she has problems breathing, abdominal pain, diarrhea and vomiting. So, in her house, Jordina and Jordi practice strict environmental control. This involved making sure that there are no xenobiotics in the house. “We have to have”, explains Jordina, “a water purifier, an air purifier (and if I have to go out, I have to wear a mask). All products in the house are organic. And also my parents and my in-laws have to use organic products all the time in case they have to come over when I need extra help”.

All this adds to the isolation that Jordina lives with and about which she writes: “It is very important that people understand that this is not a choice; it is a situation imposed by the body”. But society continues not believing or understanding people with CSS, because most of them “look good”, and the few times they go out, no one can imagine the effort they are making and the high price they will pay for their short outing.

The list of losses that Jordina has had to endure because she has ME/CFS and MCS is very long: “I have lost my professional life. My autonomy. Being able to share activities with my loved ones (like being able to join in Christmas dinner). Being able to have children. Having an income. Being believed”. And Jordi adds: “You lose a lot of friends because they don’t understand what these illnesses mean and they don’t seem to want to understand. Friends don’t make an effort to carry out some minimal environmental control. With these illnesses you lose the possibility of doing anything ‘normal’ like going for a walk where you want and when you want, travelling, going out for supper, joining in family activities…you stop being a part of society”.

Because of all this, Jordi writes: “I would like society to understand that we are neither crazy nor making things up. ME/CFS and MCS exist. People who have a CSS have a real illness, well researched and known. The fact that in Catalonia (and in Spain) they try to deny it and hide it, it does not mean that they do not exist. They have swept them under the rug for so long that the rug does not touch the floor anymore”.

One of the biggest loses, explains Jordi, is “the right to receive health care services. You can only access private health care, which involves a lot of money”. In the case of Jordina, like that of the few CSS patients that are able to pay for private health care, it adds up to 9,000 euros a year, which, in Jordina’s case, is paid by generous friends. This lack of medical care, says Jordi, “has changed my idea of my country’s health care model. It is not what they told me. They have fooled me for years”.

Another lie that we are told is that if you pay your contributions and taxes, the day you are ill, you can have economic help. Jordina, like most CSS patients in Catalonia is on a legal “pilgrimage” to try to get the pension she has a right to. This pilgrimage includes abuses by the ICAM (the Catalan Medical Evaluations Board), by judges and by lawyers. And a lot of Catalan CSS patients never get the economic help which they have a right to.

Living with such injustices, it is not surprising that Jordi says to the politicians and to the public administrations: “I would like them to know that with their discrimination and their abuses they are sinking whole families in poverty, and exclusion. I want them to remember that it is the duty of all public servants to look after the wellbeing of ALL citizens. Not only the ones they want to or the ones that cost little money”. And Jordina warns that “those of us who are ill, exist. To deny this reality only makes things worse and everyday there are more people with CSS which is creating a public health problem”.

I ask Jordina and Jordi to sum up their lives with CSS. Jordi says: “living could be a beautiful thing, but to survive, well, that is another story”. And Jordina quotes the title of the video made by the US Centres for Disease Control to educate the general population about ME/CFS: “Missing my life”.

https://www.youtube.com/watch?v=SPAhu0ojCRE

Link to original article: http://www.eldiario.es/catalunyaplural/diarisanitat/Jordina-Jordi-Perdent-meva-vida_6_314678532.html

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