Patient groups in some countries have been particularly active in using the film to educate and raise awareness: Japan, Sweden, the Netherlands, Northern Ireland – UK and the Czech Republic. Here is news about the project undertaken by a group of patients to buy and use a box of dvd as effectively as possible – giving them to those who they selected as being the most productive to target.
Nina from the Czech Club of ME/CFS Patients (www.me-cfs.cz) writes:
To mark the occasion of May – the Myalgic Encephalomyelitis (ME) awareness month – in the Czech Republic in 2013, we began an awareness campaign which involved gifting a DVD of the film Voices from the Shadows. This campaign lasted until February 2014. The aim of the campaign was to gift the DVD with the documentary about our illness to influential people who can impact the lives of ME/CFS patients in our country.
The campaign has been funded by patients themselves, their families and friends – thanks to them, 45 influential people in the Czech Republic received the DVD of the documentary.
Among the most significant recipients was the presidential couple of our country – Mr President Miloš Zeman and the first lady, Ivana Zemanová. The Ombudsman, the Public Defender of Rights (http://www.ochrance.cz/en), also received the DVD of the film. The Head of the Country Office of the World Health Organization in the Czech Republic (http://www.who.cz), Dr. Alena Šeflová PhD, and the Dean of the First Faculty of Medicine at the Charles University in Prague (http://www.lf1.cuni.cz/en), Professor Aleks Šedo, were also among the recipients of the DVD. The film was also gifted to leading doctors who chair specialist medical societies (http://www.cls.cz/english-info), to directors and heads of large clinics, editors of specialist medical journals and also to an editor of the state television who has covered the issue of ME/CFS in the past. The film was also gifted to Czech organisations for human rights and to other influential people.
The response to this campaign was essentially as expected. Interest in the patients’ situation, especially of those with the more severe form of ME/CFS, is not a priority. That’s why we really appreciate the willingness of all the influential people who, despite their heavy workloads, found time to watch the documentary, who sent us their comments and who are doing everything they can for ME/CFS patients.
Among all the welcoming responses, let’s mention the assurance from the President’s Office that the information sent to them will not go unnoticed. Quite the opposite: Mr President says thank you and that he will make the most of any opportunity so that he can, within his strictly delineated competencies, alert in the most effective manner possible representatives of the highest organisations of executive power.
A positive response came from the Czech office of the World Health Organization. Dr Alena Šeflová PhD, the Head of WHO in the Czech Republic, expressed her understanding of the difficult situation of people affected with the neurological disease ME/CFS – which is classified under the code of G93.3 in WHO’s International Classification of Diseases. Although the Czech office of WHO are trying to find a solution, an attitude change towards the disease in the Czech Republic unfortunately appears to be a long-distance race.
An offer of legal help for ME/CFS patients came from the League of Human Rights (http://llp.cz/en/) as a response to being gifted the DVD. The League deals with patient rights. An offer of legal help also came from the Czech Helsinki Committee who offered free expert social advice for Czech patients with ME/CFS, for example in the area of welfare benefits.
The film Voices from the Shadows can help to open society’s eyes to ME/CFS but only if there is wider awareness about the film. Our awareness campaign tried to do this. We tried to promote the film especially in expert circles because we believe that change of attitude towards patients with ME/CFS in the Czech Republic can come from these circles and therefore this could also offer most help. More awareness is needed so that there is more funding for medical research.
We thank the filmmakers for making the film and for the opportunity to translate it into Czech. We hope that our awareness campaign can serve as an inspiration to others to try a similar approach.
Links – some in Czech (Google Translate http://translate.google.com/ can help with translating the articles):
– Voices from the Shadows – the film website: http://voicesfromtheshadowsfilm.co.uk/
– About our awareness campaign – gift the DVD: http://www.me-cfs.cz/view.php?cisloclanku=2013041103
– A list of influential people in the Czech Republic who received the DVD as part of the awareness campaign: http://www.me-cfs.cz/view.php?cisloclanku=2013041104
The Czech Club of ME/CFS Patients – www.me-cfs.cz – provides information about ME/CFS in Czech and serves Czech and Slovak speaking ME patients and other interested parties. The activities of ME/CFS.cz are carried out by a group of volunteers who are patients, their family members and friends of families of the affected. We are not a formal association but our activities are carried out under the auspices of The Czech Association of Patients (http://www.pacienti.cz/). You can find more information about us here: http://www.me-cfs.cz/view.php?cisloclanku=2004120601.