- 1 Medical guidelines
- 2 National health department
- 3 Government health insurance
- 4 Private health insurance
- 5 Access to care
- 6 Social security and disability benefits
- 7 Patient charities
- 8 Research
- 9 Research groups
- 10 Researchers
- 11 Clinicians
- 12 Notable patients
- 13 Deceased patients
- 14 Learn more
- 15 See also
- 16 References
Medical guidelines[edit | edit source]
In Poland ME/CFS does not officially exist as a disease entity, therefore there are no general, medical guidelines.
National health department[edit | edit source]
Government health insurance[edit | edit source]
Doctors from the government medical system do not know of ME/CFS; therefore, most of these patients are diagnosed as having a psychiatric condition and are treated only with antidepressants.
Private health insurance[edit | edit source]
A very small group of doctors in private practice know of the existence of ME/CFS. In most cases an official diagnosis is made when the patient, after doing his/her own research, discovers information about ME/CFS, then finds a doctor who knows this disease. In Poland at this moment (2018) the diagnosis of ME/CFS can only be established in two places: the Praxis Clinics, which are located in the cities of Bydgoszcz and Poznań. At these clinics, testing for dysautonomia is also possible. The treatment strategy in the Praxis clinics is based on the improvement of the functioning of the autonomous nervous system through movement, which is formally called GET, but is not identical to the original GET therapy. This is the only available therapy.
Access to care[edit | edit source]
Very few patients are correctly diagnosed. Other than antidepressants and movement therapy (which is only available privately), there are no existing treatment possibilities for ME/CFS in Poland.
Social security and disability benefits[edit | edit source]
Social security and disability benefits Since ME/CFS does not exist as a disease entity in Poland, it is not possible to arrange disability benefits, a certificate of disability or a certificate of inability to work. The situation of Polish ME/CFS patients is especially dire, taking into consideration the fact that the average Polish salary of one person is not adequate to cover the needs of two people. Therefore, even those patients who are unable to work, but have a partner who works, still face many major financial struggles.
Patient charities[edit | edit source]
Unfortunately, in Poland there are no charities devoted to ME/CFS. Patients who seek support find only a small and slowly developing support group on Facebook “"Grupa Wsparcia ME/CFS (błędnie znane jako 'zespół przewlekłego zmęczenia')”. Another source of support from an informational standpoint is the slowly developing webpage mecfs.pl by a Polish ME/CFS patient.
Research[edit | edit source]
Research groups[edit | edit source]
Researchers[edit | edit source]
- 2019, Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study - (Full text)
Clinicians[edit | edit source]
Notable patients[edit | edit source]
Deceased patients[edit | edit source]
Learn more[edit | edit source]
- 2016, ME in Poland - Help me raise awareness and funding across the EU
See also[edit | edit source]
References[edit | edit source]
- Słomko, Joanna; Newton, Julia L; Kujawski, Sławomir; Tafil-Klawe, Małgorzata; Klawe, Jacek; Staines, Donald; Marshall-Gradisnik, Sonya; Zalewski, Pawel (Mar 2019). "Prevalence and characteristics of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in Poland: a cross-sectional study". BMJ Open. 9 (3): e023955. doi:10.1136/bmjopen-2018-023955. ISSN 2044-6055. PMID 30850404.
graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.
chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.