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CZECH REPUBLIC

I spoke to Nina, Klara and Jary from the Czech ME Association about life there for ME sufferers, here's what they told me.

• Are there any Czech based ME / CFS charities, associations or support groups? What do they do?

Currently, there is a ME / CFS Patient Club in the Czech Republic (established in January 2005), which runs the information site www.me-cfs.cz on this disease. The activities are provided by a group of volunteers from patients, family members and friends of the affected families. It is not a registered association, but it is operated under the auspices of a large organization - the Patients' Union of the Czech Republic.

• Do you have any idea (rough guess) and how many people in Czech Republic suffer with the illness?

Estimated 40,000 patients, but research was not done. Estimates are thus based only on the number of inhabitants in the Czech Republic.

• How do doctors and the government perceive ME?

There is no consensus in the Czech Republic about this disease. In practice, most physicians do not recognize this diagnosis, it is very difficult for patients to find informed physicians. The ME / CFS.cz Club has been working with Ministries and Medical Professionals for a long time to come to a consensus - to accept ME / CFS in accordance with the WHO (ICD-10) and Evidence-Based Medicine (EBM). Unfortunately, the prevailing attitude of both authorities and professional medical societies remains in conflict with ICD-10 and EBM and does not recognize this diagnosis

• What is the current prescribed treatment and is it successful?

​No diagnostic and therapeutic standards for ME / CFS have been introduced into clinical practice in the Czech Republic. Patient care depends on their luck whether they can find a doctor who does not solve whether or not he is diagnosed (and does not send everyone to psychiatry immediately), but he is treating real problems. Based on the experience of collaborating families, the results of our surveys among patients, and the number of questions asked by patients to help us find an informed doctor, we believe that many patients do not have adequate care here. The Patient Club with the Ministry of Health has been working on the introduction of diagnostic / therapeutic standards for ME / CFS for a long time. We have put forward 3 sophisticated Standards proposals based on the Canadian Consensus Criteria, unfortunately the Ministry has denied that the knowledge of doctors in the Czech Republic about this disease is sufficient and has dropped since the release of the standard.

• Does Czech Rep have specialist centres for diagnosis and treatment of ME/CFS?

No it does not.

• Does the medical / government establishments fund biomedical research into ME / CFS? Are they interested in trying to cure the illness

As far as we know, research on ME / CFS is not currently taking place in the Czech Republic. The most recent CFS research in the Czech Republic took place in the 1990s. In our country, we have immunology at the top level, unfortunately the interest in this disease has been terminated. The diagnosis of professional skepticism is as outlined above.

• Are patients protected by the state / given benefits etc for not working?

In 1996, this diagnosis was removed from the prescription for invalidity. Since then, it is very difficult to get a disability pension even for patients suffering from a very severe form of illness. If any degree of disability is granted to them (we have 3 degrees in the Czech Republic), it is usually a different disease that occurs in the patient in parallel and not in G93.3 (ICD-10). Many patients remain dependent only on helping their loved ones and find themselves at the margins of society in material need.

• What would you like to see changed about treatments currently offered in Czech Rep?

​If the diagnosis is not recognized, then there is no diagnosis, treatment, or social support. In the Czech Republic, it is therefore necessary to officially reach a consensus - recognizing the diagnosis in accordance with ICD-10 and EBM. We need mainly informed physicians, so that the introduction of the ME / CFS diagnostic standard and the establishment of a patient care center would be most helpful. Center doctors should work with patient care practitioners across the country to provide expert guidance.  

• What is the outlook for patients in Czech Republic? Are there reasons to feel positive, what can be done?

Representatives of disabled ME / CFS.cz with Czech ministries continue to act. There are some positive signals, but because there has been no shift in more than ten years of the club's intense activity, there is rather skepticism in our ranks. Our hopes are now mostly abroad. Especially to Norway, where promising research is taking place on Rituximab. Further to the US, where there are positive signals in changes in the National Institute of Health (NIH) approach. We see how these efforts for change are complex, how much effort should be deployed by ME / CFS advocates. We are extremely grateful for their work. (We want to get more involved, but we do not have the capacity - we barely maintain our booming activities). We hope that biomedical scientists will succeed and that access to disease will change all over the world.

April 2015