This is a very new advocacy organisation called Neúnavní (translated as indefatigable) and currently the only one here after the patient club stopped (https://me-cfs.eu/). Just their name is where the problems start - this is not just an illness about being fatigued! They could have picked a ME related name like literally every other organisation.
i find their branding extremely problematic - their mascot is a sloth. Seriously. I don't think you could have picked a more stigmatized animal to go with for this complex illness. They sell merchandise with their branding too. https://eshop.neunavni.cz/
To not just talk badly about them they did some good work too - like an actual survey of ME/CFS patients in Czechia. This is good data gathering - showing we exist here, we suffer and we are invisible. https://neunavni.cz/wp-content/uploads/2024/02/Studie-Situace-pacientu-s-ME_CFS-v-CR-2024.pdf
They also peddle really unproven advice - recommending TCAs and SSRIs while saying to be careful about everything else. Focusing on healthy diet, low stress and other generic stuff. Not enough focus on PEM and supportive care like feeding tubes for the very severe. All of their advice pretty much only focuses on mild patients. They say GET is harmful at least but recommend more absurd treatments like a long stay in a wellness area? This is on the part of their website for doctors. Also a ton of science babble about mitochondrias and HPA axis. Their most severe example is recommending interspacing activities with rest, zero mention of being completely bedbound in a dark room and worse. https://neunavni.cz/lecba/
They also did some well intentioned but in the end meaningless actions like meeting with political representatives, shaking hands while being promised better patient care (like an actual diagnosis). This is not on them but on the talking heads. https://neunavni.cz/uskutecnil-se-p...ou-vlady-cr-poslanecke-snemovny-a-neunavnych/
i find their branding extremely problematic - their mascot is a sloth. Seriously. I don't think you could have picked a more stigmatized animal to go with for this complex illness. They sell merchandise with their branding too. https://eshop.neunavni.cz/
To not just talk badly about them they did some good work too - like an actual survey of ME/CFS patients in Czechia. This is good data gathering - showing we exist here, we suffer and we are invisible. https://neunavni.cz/wp-content/uploads/2024/02/Studie-Situace-pacientu-s-ME_CFS-v-CR-2024.pdf
They also peddle really unproven advice - recommending TCAs and SSRIs while saying to be careful about everything else. Focusing on healthy diet, low stress and other generic stuff. Not enough focus on PEM and supportive care like feeding tubes for the very severe. All of their advice pretty much only focuses on mild patients. They say GET is harmful at least but recommend more absurd treatments like a long stay in a wellness area? This is on the part of their website for doctors. Also a ton of science babble about mitochondrias and HPA axis. Their most severe example is recommending interspacing activities with rest, zero mention of being completely bedbound in a dark room and worse. https://neunavni.cz/lecba/
They also did some well intentioned but in the end meaningless actions like meeting with political representatives, shaking hands while being promised better patient care (like an actual diagnosis). This is not on them but on the talking heads. https://neunavni.cz/uskutecnil-se-p...ou-vlady-cr-poslanecke-snemovny-a-neunavnych/
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