Spain: ME/CFS situation in Spain

Pyrrhus

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For the first time in Spain, a woman with ME and fibromyalgia was granted a full disability pension from the provincial court of Zamora!

In 2019, the woman was previously denied a disability pension from the national disability pension agency, INSS, because the INSS guidelines do not allow for full disability pensions to patients with ME or fibromyalgia.

Patient groups have organized petitions against the INSS guidelines and even submitted a proposed revision to the guidelines, but the INSS has refused to change their guidelines.

The ruling by the provincial court of Zamora is surprising because the provincial court's ruling goes directly against the national disability pension agency.

The national disability pension agency, INSS, then appealed the provincial court's ruling to the regional supreme court of Castille/Leon.

The regional supreme court of Castille/Leon then ruled in favor of the patient and upheld the disability pension!

https://interbenavente.es/art/40932...e-benavente-con-fibromialgia-y-fatiga-cronica

Excerpt:
Interbenavente said:
Until now, the disabilities granted meant that sick people were expected to find work in other sectors

A new advance for people suffering from fibromyalgia and chronic fatigue, not only in Benavente but in the whole country. The Social Court of Zamora has issued a sentence in which it has granted absolute disability to a woman who suffers from fibromyalgia and chronic fatigue.
[...]
The woman said that she was diagnosed with the disease in 2014, and in the following years she began a legal process to request disability status, since this type of illness did not allow her to focus on her work. The request was initially denied, and she said that "there have been many stones on the road because they do not recognize this disease, starting with my family doctor who sank me more psychologically."

At the time, she had begun psychiatric treatment due to the stress that the situation caused, which has led to chronic depression. It was in 2018, when she took a leave of absence from her job, that she was notified that she was not going to be granted disability...
 
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Pyrrhus

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A recent discussion on assisted euthanasia in Spain:
https://forums.phoenixrising.me/thr...asia-for-incurable-intolerable-illness.82432/

A sympathetic news article from 2013 that mentions a pilot study of immune function:
https://forums.phoenixrising.me/threads/me-cfs-news-coverage-in-spain.22705/

Also, a recent petition for better government recognition of ME and Fibromyalgia from the group "FibroApoyo":
https://www.osoigo.com/es/asociacio...d-y-el-acceso-a-las-prestaciones.html?u=40419

Since both the ME and Fibromyalgia communities in Spain are quite fragmented, this rather reasonable petition is not receiving much support.
 
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Pyrrhus

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There is currently a big uproar in Spain over the comments of a psychologist that implied fibromyalgia was psychological and that sufferers were "manipulating" doctors:

In Spanish, but if you open the link in the Chrome browser, it should offer to auto-translate it for you:
https://www.exclusivadigital.com/te...s-de-esteban-canamares-en-salvame-sobre-fibr/

UPDATE: A few days after this psychologist was interviewed on TV, the TV station apologized rather sincerely for the psychologist's remarks. A Spanish psychology professional society produced a letter condemning his remarks as well. This just goes to show that the patient community in Spain can indeed come together when outraged enough. (The psychologist himself, however, has not apologized.)
 
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Pyrrhus

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An ME patient in Spain, Manuel Ruiz Pablos, is crowdfunding for a research study at the University of Navarre:

All for the cause of Chronic Fatigue Syndrome

https://helpify.es/comunidades/todo-por-la-causa-del-sindrome-de-la-fatiga-cronica/

The initiative arises thanks to Manuel Ruiz Pablos, a patient who suffers from this disease, and his girlfriend Rosario Montero Mateo. Manuel's life was like that of any other university student, a medical student, who is enjoying one of the best stages of his youth: travel, friends, sports… And suddenly one day he woke up with what seemed like a cold. His life completely changed. After spending a lot of time from doctor to doctor and with unexplained chronic fatigue, he was finally diagnosed with Chronic Fatigue Syndrome. He tried to continue the race but the symptoms prevented it. Since then, together with Rosario, who is currently preparing the MIR, they both fight and study to find a cure for this disease. They are clear about it: "we want people who suffer from it to get their lives back."
[...]
Various investigations have demonstrated the presence of potential biomarkers that would indicate an inadequate immune function and signs of autoimmunity as well as alterations in NK, cytokine profiles and in the response capacity of T cells. For all this we propose this hypothesis: Chronic fatigue patients could have an alteration in the activation of T lymphocytes caused by a decrease in the HLA-II antigen presentation due to intracellular pathogens.
 

Pyrrhus

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For the first time in Spain, a woman with ME and fibromyalgia was granted a full disability pension from the provincial court of Zamora!

In 2019, the woman was previously denied a disability pension from the national disability pension agency, INSS, because the INSS guidelines do not allow for full disability pensions to patients with ME or fibromyalgia.

Patient groups have organized petitions against the INSS guidelines and even submitted a proposed revision to the guidelines, but the INSS has refused to change their guidelines.

The ruling by the provincial court of Zamora is surprising because the provincial court's ruling goes directly against the national disability pension agency.

The national disability pension agency, INSS, then appealed the provincial court's ruling to the regional supreme court of Castille/Leon.

The regional supreme court of Castille/Leon then ruled in favor of the patient and upheld the disability pension!

https://interbenavente.es/art/40932...e-benavente-con-fibromialgia-y-fatiga-cronica

Another sympathetic news article about this ground-breaking case:
https://www.laopiniondezamora.es/za...a-profesora-zamorana-jubilacion-35090077.html
Excerpt:
La Opinion de Zamora said:
A teacher from Zamora diagnosed with fibromyalgia and multiple pathologies, some associated with the first, has just obtained recognition of retirement due to absolute disability denied by the Ministry of Education upon obtaining a favorable ruling from the Superior Court of Justice ( TSJ ) of Castilla y León, which admits these ailments as limitations to carry out her work in an institute in the province, where she taught her English classes.

The TSJ not only overturns the resolution of the Human Resources department of the Ministry of Education, based on the INSS report, which denied retirement due to disability in August 2019, but goes further and grants the Secondary Education official absolute disability, explains the teacher's lawyer, José Nafría Ramos. The lawyer showed his "satisfaction with a resolution that recognizes the impossibility for my client to practice due to the multiple diagnosed pathologies."
 

Pyrrhus

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For the first time in Spain, a woman with ME and fibromyalgia was granted a full disability pension from the provincial court of Zamora!

In 2019, the woman was previously denied a disability pension from the national disability pension agency, INSS, because the INSS guidelines do not allow for full disability pensions to patients with ME or fibromyalgia.

Patient groups have organized petitions against the INSS guidelines and even submitted a proposed revision to the guidelines, but the INSS has refused to change their guidelines.
In an interesting development, the INSS guidelines on ME and fibromyalgia have recently disappeared from the INSS website...

I am attaching a copy of the guidelines for posterity.
 

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Pyrrhus

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In Valencia, Spain there is a yearly festival called "Las Fallas".
Different neighborhoods contribute to the festival in their own way.

This year, one neighborhood (Plaza Rojas) has dedicated their contribution to raise awareness of ME, by erecting a large stature of "Low Battery Man" with his signature hand over one eye.
(Low Battery Man is an actual person named Servando who has been raising awareness of ME for many years.)