Chronic fatigue syndrome is unknown in the Czech Republic, a survey on ME/CFS showed

Endowment fund Neunavní [NFN], which represents patients with chronic fatigue syndrome, conducted a survey among 149 patients with this disease. The research showed that chronic fatigue syndrome in the Czech Republic is not known by doctors and neither is the state.

Myalgic encephalomyelitis, abbreviated ME/CFS, is a serious chronic disease that significantly limits the activity and quality of life of patients. According to foreign estimates, its prevalence ranges between 0.3 and 0.5 percent of the population. In the case of the Czech Republic, this represents up to 50,000 patients.

According to the NFN survey, there is already a low level of awareness of ME/CFS among doctors in the Czech Republic. This affects the difficulty and length of the diagnosis. The main shortcoming is the absence of a comprehensive treatment and diagnostic procedure, which leads to the exclusion of ME/CFS patients from both the health and social systems.

“Less than half [44 %] the diagnosis of ME/CFS was never confirmed, and in another 15 percent it was more than five years later. Only less than ten percent received a diagnosis within a year. Which is considered an achievable limit in foreign clinical guidelines,” states the survey.

Conversely, the typical experience of patients with ME/CFS is frequent, physically and psychologically demanding testing for various other diseases. And also “wandering” through the health system across medical specialties.

According to the survey, patients with ME/CFS see an average of six medical specialties. In many cases, however, these are up to two-digit numbers. The maximum was sixteen expertise before reaching a diagnosis or giving up on the entire process.

Among the most common specializations is neurology, which was visited by 90 percent of the patients. It is followed by immunology [83 %]psychiatry [72 %] and rheumatology [61 %].

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149 patients with ME/CFS, with whom NFN has long-term cooperation, took part in the survey. The group of respondents consisted of 80 percent women. According to the NFN, this fully agrees with foreign sources, which estimate that ME/CFS affects women in 3/4 of the cases.

The age composition of respondents was across the spectrum with more than one representative from each age group. The 46-55 age groups had the most frequent representation [31,9 %]36-45 years old [22,9 %] and 26-35 years [21,5 %]. Together, they accounted for 76.3 percent of all survey responses.

“The results show that the patients most often fell ill between the ages of 16 and 35, when less than 53 percent of those surveyed began to struggle with ME/CFS,” presents the conclusions of the survey, in which it is also stated that ME/CFS affects patients even in earlier or late periods of life.

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Another finding of the survey is that ME/CFS is a long-term illness. Its average duration is nine years. And 34 percent of respondents said they had suffered from the disease for more than ten years. Two years is taken as a minimum.

“94 percent of those surveyed said they still had not recovered to at least 75% of their pre-disease capacity,” the representatives of the foundation state.

Patients with ME/CFS also showed differences in educational attainment. 3.5 percent of them had no or only basic education. And 57 percent of respondents reported a high school education. 41 percent of respondents had university education.

Awareness of the disease is low, according to the NFN survey

The survey also showed that awareness of ME/CFS is very low in the Czech Republic. According to the authors of the survey, the lack of a treatment procedure and the subsequent absence of inclusion of ME/CFS in the study plans of doctors is to blame. In practice, according to the NFN, this leads to doctors questioning the seriousness of the disease. And further to late or poorly provided treatment.

“This is mainly about recommending increased physical activity or prescribing unnecessary medication. However, the introduction of timely health measures, especially a rest regime, is key to maintaining the chance of a long-term improvement in the condition.” fund representatives point out.

According to them, 70 percent of ME/CFS patients have never met a doctor who had at least minimal knowledge of chronic fatigue syndrome. Only 19.4 percent of those questioned never encountered a medical recommendation that would lead to a worsening of their condition. On the contrary, more than 56 percent of patients regularly encounter such measures from doctors, the survey states.

According to the NFN, the problem lies in the fact that in the Czech Republic there is no effort to improve the situation of patients on the part of the government or professional medical societies. According to the fund, the situation is fundamentally better in the Netherlands, Britain, Sweden, the USA, Germany and Slovakia.

“As patient representatives, we therefore ask ourselves why this is not possible in the Czech Republic as well. Especially in a situation where member countries were called upon by a resolution of the European Parliament in 2020 to remedy the situation,” reports NFN.

Helping ME/CFS patients and challenging stakeholders

According to research, in patients with chronic fatigue syndrome, even in the mildest form, there is a 50% reduction in activity. Because of this, patients often leave their jobs. Less than half of all patients [47,1 %] he has no working hours. Only 10 percent of patients manage to work 75 percent or more of their working time.

“Unfortunately, it is evident from the patients’ experience that they do not receive adequate social support from the state afterwards. And if they do get support, it’s based on another, non-primary diagnosis,” reports NFN.

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According to the survey, 6.3 percent of patients did not feel any negative impact of the disease on their financial income. On the contrary, 58 percent of them suffered a reduction in income of more than 50 percent. The most common result [39,6 %] there was a drop in income of more than 75 percent compared to the time before the disease.

Only about a fifth of the patients receive a 1st degree disability pension. But not always based on their primary health problem, Chronic Fatigue Syndrome. And only 3.5 percent of respondents answered that their diagnosis was recognized as a reason for granting state support.

–RED–