Following up ME Awareness Month blog, I would like to share how beautifully Logan City night lit in blue. I wasn’t expecting to see them in my own eyes because I’m homebound and mostly bedbound. But my boyfriend surprised me with the spur of the moment drive. The beautiful blue light was peacefully, but unmistakeably… Continue reading Light Up The Night Australia 2021
Author: Rachel Makepeace
NDIS Access Request with ME
My experience with National Disability Insurance Scheme (NDIS) Access Request with ME has been confusing, frustrating, distressing, upsetting, depressing, and… You get the idea it has been a nightmare. I am going to share what I learnt from the process. I hope it will help people with ME (pwME) prepare the Access Request. This is… Continue reading NDIS Access Request with ME
ME Awareness Month
May12.org initiated the Global Awareness Day for Complex Immunological & Neurological Diseases. Accordingly, 12 May is the International ME Awareness Day and May is ME Awareness Month. Blue is the awareness colour for ME. 12th of May was chosen because it’s the birth date of Florence Nightingale, who is believed to have ME. ME is… Continue reading ME Awareness Month
We are Incorporated!
We are excited to announce that we have successfully set up a Not for Profit company. We have ABN and our domain name is registered. If things go smoothly, our website will start transforming from next week. We are finally at the starting line of the journey. The process of obtaining the DGR Endorsement will… Continue reading We are Incorporated!
NCNED – International Conference RID 2021 Registration
National Centre for Neuroimmunology and Emerging Disease (NCNED) has opened the early bird registration for the International Conference RID 2021. You can make the reservation and pay the fee here. RID stands for Research, Innovation and Discovery. It is exciting to notice they have significantly reduced the fee this year and introduced concession fee for… Continue reading NCNED – International Conference RID 2021 Registration
Energy Budget/Bank (EBB)
International Consensus Primer for Medical Practitioners (ICP) is a fit-for-purpose clinical guideline for ME. It guides medical practitioners and patients on how to make the diagnosis and design personalised management & treatment strategy. When you suspect you are suffering from ME, I recommend learning and practising pacing even if you don’t have the official diagnosis… Continue reading Energy Budget/Bank (EBB)
Are ME and CFS same?
Are ME and CFS same? No. Chronic Fatigue Syndrome (CFS) is defined by the diagnostic criteria The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group or widely known as Fukuda criteria (1994). Myalgic Encephalomyelitis (ME) is defined by the diagnostic criteria Myalgic encephalomyelitis: International Consensus Criteria… Continue reading Are ME and CFS same?
NCNED – International Conference RID 2021
According to NCNED’s website, they are preparing for the biannual International Conference RID 2021 scheduled on 16-17 November 2021 on the Gold Coast, Queensland, Australia. If you are a supporter of NCNED, you may be aware that their International Conference scheduled in 2020 was postponed due to COVID-19 pandemic. Let’s hope the pandemic will be… Continue reading NCNED – International Conference RID 2021
Governance
It is my strong belief for a company to thrive and achieve goals, we have to have a strong corporate governance. Our supporters may think administration, governance and compliance are not donation worthy function. However, I would like to remind you that company cannot achieve goals without good governance in its place. And these behind… Continue reading Governance
Research Recruitment – NCNED
Information shared at NCNED’s Facebook Page. NCNED is inviting patients formally diagnosed with ME/CFS and healthy controls (aged between 18 to 65 years old) to participate in continuing research using magnetic resonance imaging (MRI) of the brain.Interested participants will be asked to undergo MRI scanning with an advanced ultra-high field scanner (7 Tesla) for 60… Continue reading Research Recruitment – NCNED