Catalonia, the Greatest Women’s Fibroparking Lot

Accepting the unacceptable, the immoral, the illegal

{An article by Clara Valverde Gefaell, founder of Liga SFC/SSC — League for Chronic Fatigue Syndrome/Central Sensitization Syndromes}

12 May, 2016

Today is the International Day for the Central Sensitization Syndromes (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Fibromyalgia, Multiple Chemical Sensitivities and Electromagnetic Sensitivity). Do we have anything to celebrate?

Thousands, hundreds of thousands of women in Catalonia are being “diagnosed” (we put it between inverted commas because the diagnoses made are not even minimally correct, nor are the doctors giving them trained for it), or better said, “tagged” with “fibromyalgia”, given psychotropic medication and are told to “adapt” to the situation. In other words, they are being parked.

Catalonia has become a huge Fibroparking Lot.

For almost 20 years we have been assisting sick people via email, Facebook, talks and community groups. And each time there come more and more women describing: “they tell me I have fibromyalgia”. When they were asked in detail about their symptoms, it all points towards (many of us are health care professionals) that the woman talking to us has, possibly, one or more of these pathologies:

  • Endocrine problems (thyroid?, suprarenals?, etc)
  • Joint problems (above all, in women who have worked cleaning jobs)
  • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (recurrent infections, extreme fatigue, cognitive problems, etc)
  • Multiple Chemical Sensitivities (pain, digestive problems, memory issues, intolerance to certain products and food)

Some of these women (unfortunately a minority, since we have to resort to private medicine for this) have the possibility to get the pertinent blood tests and medical follow-up by a medical doctor who has really trained in CSS (immunology, biochemistry, environmental medicine, etc); they get a correct diagnosis and finally discover what’s wrong with them. Some of these health issues which have been tagged as “fibromyalgia” can be very much improved and even relieved completely.

Otherwise, like ME/CFS and MCS, if the person is aware they have one of these pathologies, they can get relevant symptom relief treatments and/or make changes in their lives and homes/houses to improve their health.

But now that’s not possible in Catalonia. With the “fibro” tag the person can neither help themselves nor get the help they need so much. And, to top it all, they are prescribed psychotropic medication (antidepressants). What for? That’s a huge debate. But it must be explained that antidepressants make EM/CFS and MCS worse; because they tamper with the already damaged mitochondria in the former, and they are chemicals that the body can’t tolerate in the latter. And they also worsen many other diseases.

When we talk to women labeled as “fibromyalgic”, they share their doubts about their diagnosis, about how they are being treated and medicated; and above all, about how they are being parked at the margins of society, of the public health system and of everything else that makes up a democratic society.

But the hundreds of thousands of Catalan women who have been tagged with “fibromyalgia” and are not being examined to see which health issues they really have, are they really outraged? Well, it doesn’t look like it.

The health administration and its “experts” in CSS have achieved not only to park and drug the bodies of so many women, but they have also colonized their minds.

Talking to thousands of compañeras who have been tagged with fibromyalgia, we realize that the lack of information has created huge confusion and a normalization of a mistreatment and abuse situation that is unacceptable, immoral and illegal.

A case of mass malpractice that is accepted.

Some of them say “at least I know I have a physical health problem”. That removes the cultural stigma with which women were labeled until not so long ago when their health problems and ailments didn’t want to be heard or assisted: “the nerves”. Now women don’t get “diagnosed” with “the nerves”. They are tagged with “fibromyalgia”. Have we improved?

What do these sick and misdiagnosed women want to do about this situation which is affecting them so profoundly in their lives and the lives of their families? Our researcher tells us that interview after interview, the answer to this important question is…silence.

And how will they complain and denounce this situation? Without the basic information that any patient has on their disease, it’s very hard to empower yourself, denounce and get organized.

There are even some, but few, sick women that defend the “CSS pseudo-experts” that misdiagnose, abuse and mistreat women. Yes, they defend them with the phrase we hear so much among the ill women with CSS: “Well, I don’t say anything because I need the reports from Dr X for the ICAM** [Catalan Institute of Medical Evaluations] and for Social Welfare”. And they also defend the abuse from these “experts” with the dangerous concept of “the lesser evil” (Garcés 2015).

Yes, that’s how far we’ve come in the Great Fibroparking Lot that is Catalonia.

And no, this is not happening in any other country in the world. This thing of labeling hundreds of thousands of women as “fibromyalgic” doesn’t happen outside here. In the Spanish state they are beginning to imitate this method for parking women, but it hasn’t reached the level of Catalonia.

Happy International CSS Day?

(Many thanks to our affinity group [from Liga SFC/SSC] for the research, observations and ideas).

* Catalan nurse, nurse trainer, writer, activist affected by ME/CFS for over 30 years. Founder of Liga SFC/SSC. Article published on May 12 2016 by Plataforma de Afectadas por los Recortes Sanitarios. ¡Thank you Clara for letting us translate and reproduce your article!

** Institut Català d’Avaluacions Mèdiques

Amapola y los Aviones: First documentary in Spanish on ME/CFS

(Producciones Dziga 2009) — Only in Spanish, no English subtitles available, sorry.

Image from the documentary “Amapola y los Aviones”

| Lee este artículo en español |

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