May 12 marks ME/CFS Worldwide Awareness Day, a day that aims to shed light on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
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Medowie resident and sufferer, Nicole Skinner, shares her story.
If someone strapped a sack of potatoes to your back, how long do you think you could carry it around before your shoulders collapsed or you felt your knees buckle under you in pain?
Could you do it every day of your life?
How would you feel if you went to various doctors in search of answers and most refused to validate your suffering because the illness that you have can only be diagnosed by exclusion and finding a doctor that specialises in the area is virtually impossible?
For me, that is my life living with ME/CFS.
There is nothing worse than the feeling of not being believed.
ME/CFS is a debilitating disease marked by unrelenting exhaustion, joint and muscle pain, cognitive impairment, unrefreshing sleep and autonomic and immune dysregulation and most of all post exertional fatigue.
Anyone can contract this illness and around two-thirds of cases develop suddenly, often after a severe viral infection such as glandular fever.
I contracted this illness after a severe episode of Epstein Barr Virus or glandular fever when I was 19.
I am now 51, and to say it has interfered with me living a normal life is a severe understatement.
I no longer able to work and during “flares” in my condition it is not unusual for me to be mostly house-bound.
Full recovery from this illness is rare and sufferers tend to suffer in silence because often they are too ill to champion their cause.
Through management of my illness I became a radio producer and worked for the ABC for 22 years, but because of my illness I became the first part-time producer ever to be employed in the ABC.
In 2010 however, my journey became much more complicated when I ended up suffering a mental health episode due to the worsening of my fatigue symptoms and other complications.
It is not unusual for people with ME/CFS to suffer co-morbid mental health issues due to the burden, invalidation and lifestyle limitations this disease places upon us.
It is thought more than 100,000 people suffer from this disease in Australia alone and Federal funding is abysmal!
According to Emerge Australia (Australia wide support site), the National Health and Medical Research Council states, the federal government has not funded a study into Chronic Fatigue Syndrome for more than a decade.
Only two studies have been funded since 2000, amounting to a total of only $558,000 in 17 years.
Comparatively HIV, with only 26,000 sufferers received more than $100 million.
There are no proven treatments to cure ME/CFS, one cannot think themselves well as many doctors would have you believe and it can become increasingly debilitating for some.
I have lost my career, an identity, an active and social lifestyle, and many friends due to a lack of understanding of the true impact and nature of this illness.
Information to manage this disease can be conflicting, and many sufferers lack support due to the rarity of support groups and the inability to be able to attend them.
Energy management is wrought with worry as “push, crash” cycles dictate your life, never knowing whether that family engagement you have to attend will potentially leave you housebound for months on end.
Australian researchers from Griffith University have recently announced that they have found a biomarker and a diagnostic blood test has been patented and will be available in the near future.
Despite what many in the medical fraternity would have you believe…this is a real physiological disorder and severe cases can leave patients bed-bound.
Validation and support for this disease is gaining momentum throughout the world and never has there been a time of hope and promise for sufferers.
For without hope, CFS patients such as myself can struggle to keep surviving on a daily basis.
Australia needs to do more for ME/CFS sufferers because currently it is failing them!
Please join us in helping to raise awareness of this severely underfunded and life-changing disorder by marking and acknowledging the worldwide awareness day on May 12.