Catalan: Fibro, CFS and MCS patients face new restrictions on medical care

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Report from Catalan

The Catalan Government Health Department’s new plan for Central Sensitivity Syndrome patients

Liga SFC/SSC, September 2015
On July 1st, 2015, the Health Department of the Catalan Government published a document, “Central Sensitivity Syndromes: Fibromyalgia, Chronic Fatigue Syndrome and Multiple Chemical Sensitivities”. This document was written by a group of so called “experts” appointed by the Health Department, after several months of protests by Central Sensitivity Syndrome (CSS) patients who had lost, over the last two years, the access they had to their specialist.
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]New policies leave ME, fibromyalgia and multiple chemical sensitivity in a medical and legal “Guantánamo”: with no medical care and no legal rights.[/pullquote] The lack of relevant medical services for patients with these illnesses in Catalonia has been denounced for decades by amongst others, ME patient associations, the Ronda Lawyers’ Coop and the Marea Blanca Catalunya (a coalition of a hundred citizen, patient and health professional groups in Catalonia that fight to defend public health care from cutbacks and other austerity measures).
But the situation of these patients, which are according to the Catalan Government, comprise 3.5% of the Catalan population, got even worse since 2013, when the majority of them lost what access they had to public health care.
This change was justified by the Government saying that they had to reorganize patients “by zones”. As a result, most patients, except those living in the immediate area of the only two ME/CFS Units were left with no doctor.
These patients can still see their General Practitioner in Primary Health Care, but GPs in Catalonia have neither the training in CSS nor the access to any testing to deal with these complex illnesses. When patients who have ME/CFS, MCS or fibromyalgia see their GP, the GP asks them: “What does your specialist say that we should do?” For this the patient has no answer as he or she has no access to a specialist.
Given the protests, including 1,070 law suits against the government by CSS patients, the Health Department said that they would “fix the problem” and they set up a committee of eight doctors and 1 government administrator. The 8 doctors who wrote this plan are: José Alegre-Martín, Francesc Xavier Cantero-Gómez, Antonio Collado-Cruz, José Manuel Fernández-Huerta, Joaquín Fernández-Solá, Santiago Nogué, Lluís Roselló-Aubach and Miquel Sala-Gómez.
Most of the doctors in the Committee (mostly rheumatologists and three internal medicine specialists), are the same ones that have been writing the Catalan government plans for these illnesses over the last fifteen years. For ME/CFS patients, guidelines are based on the 1994 Fukuda Criteria for CFS and recommend patients be treated with cognitive behavioral therapy (CBT). For fibromyalgia patients they have recommended a ban on Lyrica, a drug commonly prescribed to manage fibromyalgia in the US and psychoeducational groups. And for Multiple Chemical Sensitivities, they have recommended nothing. There are no Environmental Medicine doctors in the Catalan Public Health Care System and MCS patients are left to their own devices with absolutely no medical care or social services.
Also, most of the doctors in this “Experts” Committee work both in the public health care system and the private one, to which they send their patients from the public health care system (which is against the law but it is done anyway and everyone knows about it: government, press, politicians, etc.).

New recommendations remove access to specialists and put psychotherapy at the center of care

The three main recommendations that the Committee of “Experts” Report makes are:
1) CSS patients should only be attended to in Primary Health Care 
The report says that patients with ME/CFS, fibromyalgia or MCS should be diagnosed and treated in Primary Health Care (PHC). (This is despite the fact that GPs in Catalonia are not trained to do so and have voiced their anger at “having this problem dumped on them” –as many GPs are writing to the Liga SFC/SSC to complain about the decision.) Also that it should be these PHC GPs who write the medical reports for medical inspection.
In Catalonia neither the Government Medical Inspection Board (ICAMS) – in charge of sick leave and pensions-, nor private insurance companies, accept medical reports from GPs. They must be from a specialist. These medical reports are indispensable if a patient is going to have any chance at sick leave or pension.
Unlike with other illnesses, people with CSS in Catalonia are turned down for sick leave and pensions by the ICAMS most of the time even if they are too sick to work. This means that they have to appeal through costly court cases that drag on for at least two years and require high quality medical reports.
The advantages for the government of having CSS patients “parked” in primary care are obvious. If the patient does not have proper reports, he or she will not have to be payed sick leave nor pension.
When the patient needs a proper medical report, he or she will have to go see a specialist in his private practice, one of the few specialists whose reports are accepted by the ICAMS.
And who are these specialists? They are members of the Experts Committee who are the authors of this report. They charge 200 euros per medical report and CSS patients in Catalonia need several of these reports for the ICAM, for their court cases, appeals, etc. Given that there are, according to the Catalan Government, 250,000 CSS patients in Catalonia, it makes for a great source of income for some of these “Fukuda experts”
2) That the treatment for all of the Central Sensitivity Syndromes should be CBT and “Exercise”
They do not specified if it should be graded exercise (GET) or just plain “exercise”)
3) ME patients (they call it “CFS”) should be attended to by the following health professionals, in order of priority: 1. Psychologist, 2. Primary Health Care doctor (GP), 3. Physiotherapist, 4. Psychiatrist and 5. Primary Health Care Nurse.
Needless to say that if this report and recommendations were made about any other similar illnesses (Multiple Sclerosis, Lupus, etc), there would be a major outcry. But most CSS patients in Catalonia are too ill to protest and are afraid to do so as they are constantly harassed by the Medical Inspection Board.
A recent investigation by lawyers – Ronda Lawyer’s Coop- and journalists – Sentit Critic- this year has shown that the Catalan Medical Inspection Board is targeting CSS patients: taking away their pensions and refusing them sick leave and pensions. And that the inspectors are payed a premium for taking pensions away from CSS patients who had been given them by a judge’s ruling after a long and costly court case.
This 2015 Catalan Government Report about CSS is only available in Catalan. If you want a copy in PDF or if you want to have more information on this situation, you can contact us at [email protected]
The person in the Catalan Government who is in charge of this Committee is Dr Cristina Iniesta and her email is [email protected]

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7 thoughts on “Catalan: Fibro, CFS and MCS patients face new restrictions on medical care”

  1. My daughter has Fibo and MECFS.
    She tried CBT and GET.
    It just made her worse. The research finding inflammatory cytokines and brain inflammation shows it is a result of a physical cause.
    The recent article by Dr David Tuller showing the serious flaws in the PACE trial grin forces how useless and damaging Get and CBT are for these patients.

  2. I live in Catalonia and can confirm that all the above is unfortunately true!
    I can never get more than 2 months off sick because of ICAM and the private health insurers.
    I have lost my specialist doctor who I saw in the public hospital but had to see and pay privately so I could get reports. I’m one of the lucky ones and still see an Internal Medicine specialist but he admitted to me in the last visit that the reason people don’t get better from CFS is due to physcological reasons! He recommends GET and CBT which I’ve done with no improvement.
    I’ve taken it to court to get a incapacity benefit but lost twice and spent 5000euros in the process. I’m going to try again!

  3. christina carroll

    What is going on in the UK and Europe with this illness is abuse of human rights. The psych movement is still going strong and governments are more than willing to listen to them to save money, especially after governments have had to bailout the banks and have brought in austerity to make the ordinary citizen pay for the irresponsible behaviour of the few. ME/CFS is not improved by CBT and graded exercise but they are cheap and governments don’t need much convincing to use them. We have to fight back even harder to get the proper treatment we deserve and need and to get governments to put money into research into to this illness.

  4. Why should exercise or GET be seen as the answer to cental sensitivity anyway? It is absurd even by its own limited view of the condition/s. Why????
    Exercise is good fro some depression, but is treatment of depression limited to exercise?
    So why, even if they believe exercise is good for CS, make it the sole treatment. Do they do this for other indisputably mental illnesses? No. Then why do it for patients who show physical symptoms and in whom a biophysical aetiolgy has by no means been excluded, as no real exclusion diagnosis is done and research point to biophysical abnormalities unrelated to deconditioning and worry.
    What of patients who are not worried about exercise and have undertaken a good deal but with PEM?
    These are jokers of the first order. Sadly there are not enough circuses to accomodate them.

  5. is there any benefit if the UK PACE trial is retracted, proven to be false / fraudulent ?
    did the Catalan decision makers rely on the PACE trial, to support their argument,
    and would they reconsider their decision, if/when the PACE trial is retracted ?
    would the lawyers have more ammunition if the PACE trial is retracted ?
    it may take years for the genuine medical research to find strong biomarkers,
    and large-scale confirmation of the many known biological dysfunctions.

  6. Have these “experts” not read the USA – institute of Medicine report !! Ie ME is a physical disease. Have they not had a good read of the nonsense that is called a study in the PACE and FINE studies??
    I have ME I gradually increases my exercise to 48 minutes every second day and just had to cut back to 12 minutes as all that happened was I made myself sicker!!
    Evidenced by true resting heart rate – as well as being unable to think, leave my bed etc…

  7. Kristina Schwende

    I am mystified AND appalled over what these patients are being subjected to. It’s cruel and inhumane. For someone looking in they may wonder what the big deal is; however, those of us living with these conditions understand the ramifications all too well. I also recognize that this is a global issue. We ALL need to come together as one unified voice – patients, doctors, caregivers, advocates, etc. How this will happen, I don’t know. But thankfully there are people and organizations blazing a trail that others can follow. For now, let’s bombard Dr. Inlesta ([email protected]) with emails! Let’s contact news agencies, advocacy groups, and human rights agencies! Perhaps a few of us can’t do much, but with millions of us around the world, we can be a strong, loud voice for change – a voice that must be tempered with restraint and respect. Let’s raise the bar, not lower it. I would like to thank the #ME Action Network for keeping us apprised of the situation, and helping us become a unified voice.

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