Fibromyalgia & M.E/CFS to be recognised as an Official Disability in the Rep. Of Ireland
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What is Fibromyalgia and Myalgic Encephalomyelitis(ME) or commonly known as Chronic Fatigue Syndrome(CFS)?
Fibromyalgia is a central nervous system disorder, and can be described as a central sensitization syndrome, caused by neurobiological abnormalities. This acts to produce physiological pain and cognitive impairments, as well as neuropsychological symptomatology. In simpler definition:
Fibromyalgia is a chronic condition characterized by widespread pain in your muscles, nerves,ligaments and tendons, as well as chronic fatigue and multiple tender points - places on your body where slight pressure causes pain. Myofascial pain syndrome is a chronic form of muscle pain.
The pain of Myofascial pain syndrome centers around sensitive points in your muscles called trigger points. The trigger points in your muscles can be painful when touched. And the pain can spread throughout the affected muscle.
Myalgic Encephalomyelitis(ME) or commonly known as Chronic Fatigue Syndrome(CFS): is a neurological disorder that affects multiple systems of the body and often follows an acute viral infection. Sufferers experience, range from brain inflammation, headaches/migraines, bone and muscle pain, swollen lymph nodes, muscle spasms, seizures, vision abnormalities, bowel dysfunction and cardiovascular abnormalities.
You may be asking,” Why did I start the Petition?” Well….
While Fibromyalgia & CFS (Chronic Fatigue Syndrome)/M.E (Myalgic Encephalomyelitis) are not rare diseases by the numbers, even though they are in the World Health Organisation listed as neurological diseases, we can feel it, by the rarity of research, understanding & treatment by the chronically ill community.
These are life-changing and debilitating conditions and we are often outcasted sufferer's of stigmatisation & marginalisation. These are classified as an "impairment" or "long-term illnesses" rather than a disability. With these factors comes with sufferer's struggling with their mental health due to these impacts.
We have been trying to highlight how this pain affects all areas of in the lives of sufferer's. An example would be the serious gaps in treatment care, from a social welfare and healthcare point of view, our occupations, school/college and etc. Fibromyalgia causes insomnia (due to pain). No sleep, causes tiredness, resulting in chronic fatigue. Simple but yet a destructive cycle......known well by too many
And so I want to stand/sit/lie in solidarity with my fellow Spoonies by starting this petition (on the 2nd March 2019), to help raise awareness of our reality & injustice on our invisible daily battles.
We want better communication & updated understanding from the healthcare system. We deserve increased biomedical research funding, removal of ineffective treatments & instead care provided by medical professionals who are trained in the accurate diagnosis & appropriate treatment.
Do not just leave it up to the Charity sectors ( who have been beyond amazing in supporting and raising awareness on the sufferer's behalf).
On 24 January 2007, the World Health Organisation definitively classified fibromyalgia with the code M-79.7 in the International Classification of Diseases (Chapter XIII ‘Diseases of the musculoskeletal system and connective tissue’).
In the United States, fibromyalgia is recognised as a disease which causes disability, and the Food and Drug Administration (FDA) has approved drugs to treat the disease.
After a historic debate in the UK, Westminister Hall, on Tuesday 15th January, MPs of all parties contributed to a debate on fibromyalgia, helping to raise awareness of the condition. They shared stories from their own lives, and those of their constituents, about its impact. The debate focussed on the impacts of fibromyalgia, the support available and how the healthcare and benefits systems could be improved for people living with condition. It followed a petition started by a person with the condition, Adrienne Lakin, that attracted over 115,000 signatures and called for fibromyalgia to be recognised as a disability under the Equalities Act 2010.
Over 20 MPs turned up to speak in the debate. It was led by the Labour MP for Chesterfield, and in Westminster, Toby Perkins.
We want the same in Ireland and not to be left behind!
Even the European Parliament has signed a declaration, calling for the recognition of fibromyalgia as a disease which causes disability with a right to claim exemption. But to date, nothing has been done, as regards to implementing the declaration here in the Republic of Ireland. Why?
Fibromyalgia is still somewhat of a black box to the Irish medical community. It is a diagnosis of exclusion; to get the label, you must have pain in all four quadrants of the body for more than three months. Often, you have at least some of the 18 fibro “tender spots” on your body—on your legs, on your shoulders, on the back of your head—that trigger pain when pressed.
So what are you waiting for? Please listen to us and believe in us...believing is not always seeing. We want this to be recognised as a disability, according to the Disability Act 2005.
Don't judge a disability by its visibility :) x
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