Wednesday 17 May 2023

International ME Awareness Month - Severe ME


Educational Film on Severe Myalgic Encephalomyelitis (ME)

Despite Myalgic Encephalomyelitis (ME) affecting thousands of people in Ireland, of which 25% have a severe form, most go without daily home care, and healthcare is completely beyond their reach.

A common theme facing people with Severe ME is that they can become isolated when families, friends, and doctors fall away due to indifference, denial, doubt, and an inability to care, all because of a lack of medical education on ME, lack og government policy and health agency guidelines...patients are left to manage their own care ...but those with Very Severe ME are incapable of self care, they are left isolated precisely when they need help the most.

We have advocated for a few people with Severe Myalgic Encephalomyelitis in the past few years. With each patient we experience the same sense of anxiety over our ability to get things right especially for those who do not have family or friends or carers or advocates.

They lie alone in darkened rooms confined to bed isolated without daily home care, some without nutrition, most without essential healthcare provision.....most cannot get about because of the post exertional crisis that occurs following even the slightest movement,...the same patients would find a medical visit difficult, if such a thing were provided, because of doctors' lack of knowlegde about the way to approach their particular level of suffering.

Former ballerina Anil van der Zee has made a beautiful, moving film about his difficult and challenging life with ME; he highlights his current and past difficulties living with Severe and Very Severe ME.

Thank you so much for sharing a slice of your story with the world Anil, you have provided us with a powerful and poignant personal piece to inform others who don't already know about the horrendous suffering in Severe ME.

Please see Anil's film, 'The Days with M.E.'

#MyalgicEncephalomyelitis #ME #MyalgicEncephalomyelitisAwareness

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