What name is given to the disease?
• ME/CFS or ME preferred by patients in the Czech Republic • doctors, officials and media are using CFS which means something equal to "chronic fatigue", when asked about ME, they say it is synonyme for CFS, but also sometimes for fibromyalgia and sometimes even neurastenia is considered to be synonyme (as well as fatigue syndrome).
Estimated numbers of patients
20 000 - 40 000
Status of recognition
• ME according to the ICC or CCC is not recognized (and these criteria not known) at all,CFS (even when using ME diagnostic code G93.3) is considered as "working diagnose" used to work with until final diagnosis is found (which means G93.3 is used equally and similarly as R53 or F48.0 and CFS is not considered a diagnosis)
non officially according to doctors, the most suitable specialization for CFS is psychosomatic which is a specialization so unrecognized that is not even covered by health insurance
Specialism used to treat ME
None, officially GPs should be fully responsible for patient with ME/CFS and patient should be referred not to
one specialization but to all possible (according to the GPs consideration),
The reality is that patients are rejected by all specialisations because all of them consider ME/CFS to be somebody else's responsibility.
It is stated that the individual (which comes from the fact that every chronic fatigue is considered to be ME/CFS),
therefore is supposed to be even impossible to determine and practice ME/CFS specialization so officials refuse
to even consider the idea of specialization
No specialist, no doctor specially and deeply aware of the disease, no research, the main doctors considered to
be most experienced in the disease are not specialized but follow more general approach to all "chronic fatigue"
patients, do not even use PEM as a symptom and recommend excercise considering deconditioning to be a CAUSE of relapses.
No knowledgeable doctor to bring new insights and to teach others available.
Average time before diagnosis
2 or 3 years minimum,
Sometimes patients never get a diagnosis and can be years "under examination to find the correct diagnose, a cause" or
get a psychiatric diagnosis.
Guidelines used
No official guidlines, but unofficially guidlines based on Holmes criteria are used and the origin of the disease is considered to be psychosomatic if no " known" CAUSE is found.
Disability status of patients
The majority of patients need disability benefits yet less than half are accepted to receive them.vast majority of disabilities is for psychiatric condition (anxiety, depression, neurastenia, personality disorder) other have disability for their comorbidities all psychiatric disabilities are undestimated, which means people are partly disabled (35 percent only) not fully disabled, which means they have limited access to benefits, no access to parking permit or transportation sales or disability aids and are considered fit for work, the lovest pension, etc. Vast majority of patients with ME/CFS has only partly disability, which means they still have to work because considered fit to work. neither ME, nor CFS, PVFS etc. are listed as disabling conditions, they are considered rarely disabling (sometimes proved by disability statistics when disability assesment process obstructs getting disability for ME/CFS by not listing condition as disabling and allows using different conditions instead, catch 22)
Other Observations
• The main official argument why not accept CFS as a diagnose is that it was removed from ICD, therefore it was an impulse to remove it from the list of disabling conditions and final diagnosis decision. Support name ME which has been always listed in ICD tabular part so no "WHO rejection from list of diagnoses" ever happened. The main problem that prevents from better understanding and recognition is the idea of "strictly individualized attitude". Means every patient is considered to have different cause (understand different condition, different diagnose because ME/CFS is symptom, not diagnose), which means it is not possible to look at the patients together as a group and look for similarities. This makes ignoring patients more easier because they are not a neglected condition but a few unlucky individulals who are not diagnosed yet (and therefore can't be treated, if we do not know the DIAGNOSE). Instead of looking what is simillar they emphasize differences to force us fight alone and lonely not as a powerful group. Do not support the individualized attitude, but support the similarities which can recognize illness as worth studying. The main misunderstanding among doctors (let alone media, healthy family members etc.) comes from the fact that condition called CFS (and ME considered to be synonyme) is officially defined not a disease, but "a set of symptoms which !!!never stand alone, but always belong to other diseases!!! (such as neurastenia, aging, MS, cancer, etc.). Support definition and proofs that ME/CFS is a unique disease.
