Petition against lawbreaking of human and civic rights of czech patients with benign myalgic encephalomyelitis/chronic fatigue syndrome - PETICE PROTI PORUOVБNН LIDSKЭCH A OBИANSKЭCH PRБV ИE

Information from the ME/CFS/CFIDS sufferers - Czech Republic

-Submission of a Petition on the Myalgic encephalomyelitis/ Chronic Fatigue Syndrom/ Chronic Fatigue Syndrom and the Immunodefficiency Dysfunction Syndrom

Dear ladies and gentlemen,

this is to inform you about our submission of the Petition mentioned above. We submitted it to the Minister of the Government of the Czech Republic for Human Rights and National Minorities with a request to solve the problems thereinafter.
In our opinion, the sufferers of ME / CFS (syndrom in the further text) are subject to discrimination and long-term disregard of their human rights that are declared in the Declaration of Human Rights and the Charter of Fundamental Rights and Freedoms.
Please, kindly see to it that our initiative is considered as basic documentation that would initiate a debate of competent bodies of the EU charged with observance of human rights in the member states. The pressure of these bodies is seen as necessary for the rectification of the present situaton of syndrom sufferers in the Czech Republic.

Summary: Patients affected by ME/CFS disease require in the petition better access to both complex medical and social care in the Czech Republic, termination ofdownplazing of the disease and its consequences, displacement of misinformation and half-truth information, which contribute to their discrimination and social exclusion.

What we ask the Czech Republic to implement:

1. The syndrom should not be classified in the future as a psychiatric ailment, because the psychic base of the illness was rejected by world scientific bodies.

2. Most recent research results of medical science should be considered. This includes the recommendation of the World Health Organization (WHO). Czech Republic as a WHO member is bound by international treaties to respect WHO opinions.

3. The following practices should be introduced:
-complex medico-social system of care for the syndrom sufferers - a Center of patient support in Prague should be opened,
-compilation of Work manuals for the professional health care providers with information about the proper handling of the syndrom sufferers. This should lead to the discontinuation of undue discrimination in their treatment and their social conditions,
-introduction of safeguards that would prevent possible violation of human rights entrenched in the Declaration and the Charter of Fundamental Rights and Freedoms.

4. Incompetent officials should be recalled, if proven to have mishandled critical situations of the syndrom sufferers. Any and each of the institutions listed below could be subject:
-Ministry of Health
-Ministry of Labour and Social Affairs
-Czech Board of Social Security - Medical Review Committee
-Health care Directors at Regional Offices and MDs operating private medical offices in case they contributed to the discrimination of the sufferers

5. An independent Parliament Investigation Committee should be created that would investigate cases of possible discrimination of syndrom sufferers by government bodies or the judicial system

6. Legislative bodies should entrench appropriate legislative and control mechanisms that would ensure the professional handling of cases of the syndrom. This should eliminate insufficient public awareness of the syndrom, lack of unbiased procedures in handling the syndrom cases, disinformation, prejudices, lack of material and psychological suport systems for syndrom sufferers, who still have to rely mostly on the help of their families and friends and are being denied their offical right to life in basic dignity.

As in many CASE, the sooner the disease is detected, the more chances are got for the patients to get better and to keep their jobs.

In the name of ME /CFS sufferers in the Czech Republic

the Petition initiatior
Ing. Jana Outratova CSc.

Czech version

Souhrn: V Petici zdravotnм postienн nemocн ME/CFS poadujн zlepenн pшнstupu ke komplexnн lйkaшskй i sociбlnн pйиi v Иeskй republice, ukonиenн bagatelizace nemoci a nбsledkщ, kterй zpщsobuje, odstranмnн dezinformacн a polopravd, kterй vedou k jejich diskriminaci a sociбlnнmu vylouиenн.

Dмkujeme Vбm, e jste svэm hlasem rozhodnuti podpoшit шeenн mimoшбdnм tмkй situace zdravotnм postienэch ME/CFS v Иeskй republice.
Pro odeslбnн hlasu stisknмte tlaинtko: Click Here to Sign Petition a odelete vyplnмnэ formulбш stiskem tlaинtka: Preview Your Signature. Odeslбnн formulбшe dokonинte kliknutнm na tlaинtko: Approve Signature.