Hi, I’m Ruth Newport and I’m shaving my long hair off on World ME/CFS Awareness Day, 12 May, to raise Awareness for ME/CFS and fundraise for Emerge Australia.
Hi, I’m Ruth Newport and I’m shaving my long hair off on World ME/CFS Awareness Day, 12 May, to raise Awareness for ME/CFS and fundraise for Emerge Australia.
This disease has been dismissed, ignored and misunderstood for decades. The current Australian RACGP and RACP treatment Guidelines have not been updated in over 20 years and include harmful therapies for those sick with ME/CFS. It’s time we saw updated safe treatment guidelines, appropriate action and support for the 500,000 Australians suffering with this illness.
I have lived with Myalgic Encephalomyelitis (ME/CFS) for over 25 years. It has profoundly impacted my entire adult life. Even after this long, I don’t quite know how to fully articulate what living with this invisible illness is like.
Firstly there’s having to live with extremely limited energy, debilitating fatigue and pain, cognitive impairment, sleep disturbances, orthostatic intolerance and flu-like symptoms every single day. There’s more but that gives a general idea.
Secondly, there’s the constant losses to mourn; from activities and exercise I can no longer participate in, the social engagements I cannot attend, the work I can no longer do, to the friends I have lost along the way who did not understand how sick I am.
Finally, there’s the lack of understanding and dismissing of symptoms by doctors, specialists, health professionals, family and friends. It’s an isolating illness because it doesn’t have an end date and it’s unpredictable in it’s presentation.
I have spent more time that I care to admit wishing I had an illness that had a cure or proven treatment, even if it came with a terminal diagnosis. Living the roller coaster of episodic times of remission when I could live life almost like anyone else and relapses where I could hardly move and participate in life is emotionally taxing.
Emerge Australia helped me find doctors who understood ME/CFS when I first moved to Australia from New Zealand in 2011. They educate doctors and health professionals and support the ME/CFS patient community in many ways. I have recently benefited from their free Telehealth Nurse service. Speaking with an ME/CFS nurse who really “gets” what it is like to live with ME/CFS significantly helped me navigate the latest relapse and loss of functionality.
Prior to contracting Covid in January 2022, my ME/CFS and Fibromyalgia symptoms were mostly in remission and well managed. I lived a pretty active and functional life as a business owner and busy Mum to two young children. I could comfortably participate in family, community, work and social activities even though I lived within my limits by monitoring my energy levels and looking after my health mindfully.
For the past 15 months, I have not been able to leave the house without exacerbating symptoms. I cannot participate in my usual life the way I used to. I have to spend the majority of my day horizontal and resting, which when parenting two young children is challenging to say the least.
This latest relapse triggered with the Long Covid update has made me more determined to speak up and raise awareness for ME/CFS and post- viral illness. There are so many people of all ages suffering the long term effects of this debilitating illness. At least 50% of Long Covid patients will qualify for an ME/CFS diagnosis.
Long Covid and ME/CFS both have biochemical causes and deserve far more respect, research funding and up-to-date treatment support than they are currently offered.
This fundraising event is:
- an act of mourning to honour all those who live with weight of ME/CFS and mourn the losses it has brought to their lives.
- a call for change to raise money and awareness of the debilitating impact of ME/CFS.
- a challenge to society to treat people with ME/CFS with the same level of seriousness as they would any other major illness and disability.
All donations over $2 are tax deductible.
