Just over a week from our previous milestone and yet, here we are again, hitting another! Thank you so much for all the support. Behind the work scene is definitely happening to keep pushing until we are properly heard.Calling all Irish Fibromyalgia and Chronic Fatigue/M.E. sufferers & allies....
Inspired by our Uk and American friends and the progress that has been made over in the States with government funding and new research projects and the Westminster debate discussion in the UK, it’s time for us to put the pressure on the Irish Parliament. We are asking for an increase in budget to fund bio-medical research as well as the formation of a work group to represent the issues facing our community in government.
This past Tuesday, March 12, Danish Health MPs unanimously agreed on a declaration that will recognise Chronic Fatigue Syndrome (CFS|)/ Myalgic Encephalomyelitis (ME) as a distinct disease, remove it from the “functional somatic syndromes” category, and promoted the World Health Organization (WHO) diagnostic codes for ME.
Parliament voted on the declaration on Thursday, March 14th. The vote is said to be a formality, as the agreement has been made.
This is a major victory and incredibly exciting time for people with ME in Denmark where the disease guidelines and Danish Health Authority have treated ME as a psychosomatic disease. Patients are currently sent to centers for “functional somatic disorders,” and prescribed graded exercise therapy based on “evidence” from the deeply flawed PACE trial, and the Cochrane review. Various other illnesses have been categorized as “functional somatic disorders,” including fibromyalgia, irritable bowel syndrome, whiplash, PMS, tinnitus and tension headache.
The people of Denmark are celebrating! And it shall be our turn soon. And action is happening everywhere, for example in Norway, the Uk, in the US,Finland and etc.
Check out MEAction on Instagram, Facebook and on their website, they are an international network of patients empowering each other to fight for health equality for Myalgic Encephalomyelitis. MEAction aims to grow the scientific field through outreach, education, and fellowship opportunities for young investigators, and by empowering patients to understand, engage with and participate in research.
#MEAction is not structured like a traditional advocacy organization or patients’ association. They are primarily a platform, designed to empower patients advocates and organizations, wherever they might be, with the technological tools and training to do what they are already doing – better.They were founded with the belief that while we may find it difficult to advocate for ourselves in the physical world, in the virtual world, we can be an unstoppable force.
#MillionsMissing is a global campaign for myalgic encephalomyelitis (ME) health equality. We protest around the world for increased government funding for research, clinical trials, medical education and public awareness.
Led by #MEAction, the first global protest took place in May 2016 and has since grown each year to an astounding 100+ cities and virtual protests in 2018.
ME (commonly known as "chronic fatigue syndrome") is a systemic neuroimmune disease characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion).
It causes dysregulation of both the immune system and the nervous system.
The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work. ME affects 15 to 30 million around the world, yet this disease remains invisible and people are missing from their own lives.
Lets keep sharing this petition. Lets get the conversation and simultaneously break down the stigma of invisible illnesses.Together, we can become the strength of our true numbers.We cannot be left behind this time.
Its time for Fibromyalgia and CFS/M.E voices to be heard! Education is the key! Time waits for no one
Thank you!