Thursday, 8 August NCNED: ME/CFS Research Update NCNED researchers will provide an update on their ME/CFS research data and plans for the year. Thu, 8 Aug 2024 12:00 PM - 1:00 PM AWST The Niche 11 Aberdare Rd Nedlands, WA 6009 Australia https://www.eventbrite.com.au/e/ncned-mecfs-research-update-tickets-964772409247
I don’t know anything more at the moment but it sounds very specific to be made up @EmergeAus has green lit this study: 'Examining the Relationship Between Adverse Childhood Experiences, Sensory Processing Sensitivity, and Fatigue Severity' Chief Investigator, Dr Nanette Gerlach psychologist. Shame on Emerge Australia for supporting the BPS brigades!
More info: Institute of Health and Wellbeing PROJECT TITLE: Examining the Relationship Between Adverse Childhood Experiences, Sensory Processing Sensitivity, and Fatigue Severity CHIEF INVESTIGATOR: Dr Nanette Gerlach OTHER/STUDENT RESEARCHERS: Carmen Lia continues: https://federation.syd1.qualtrics.com/jfe/form/SV_8ih32CEiyEJ228K
Severe ME Day Webinar Event 2024 Lived Experience Forum ME Group Australia https://www.youtube.com/watch?v=w6zxIRevhjQ
A reminder that I am involved in several ME/CFS or Long COVID biomedical research projects - if you live in VIC and want to participate get in touch by DM or D.Missailidis@latrobe.edu.au Beginning to schedule folks in for the pinned study so now is a good time to get involved!! https://twitter.com/user/status/1832961033553805724
Interesting thread about players from the Australian Football League and growing reports of illness. It seems to be a simple text search centered on the keyword 'illness' but still interesting. And of course if anyone noticed how things were going at the Olympics, the same pattern was noticeable. Lots of illnesses.
"Stem cells used to identify doping drug as potential chronic fatigue [syndrome] treatment A researcher finding existing drugs to repurpose for treating psychiatric disorders and chronic fatigue syndrome is amongst the winners of the 2024 Australian Mental Health Prize. The awards celebrate individuals who have made significant impacts in mental health through cultural security, lived experience, professional innovation, and community support." Continues at: https://cosmosmagazine.com/health/m...-drug-as-potential-chronic-fatigue-treatment/
Press release: https://www.deakin.edu.au/research/...health-prize-for-pioneering-deakin-researcher “‘Our stem cell platform allows us to quickly test and repurpose existing drugs, potentially offering new hope for conditions like bipolar disorder, schizophrenia and #chronicfatiguesyndrome, where treatment options are limited,’ he says.”
I haven't been able to find a published paper for that work on trimetazidine, perhaps it's still in the pipeline.
The repeated use of 'chronic fatigue syndrome' and the other mental health conditions mentioned don't exactly fill me with hope...
Interestingly it is not an original idea. In 2007 a patent - Trimetazidine for use in the treatment of fibromyalgia syndrome and related conditions - was published: https://worldwide.espacenet.com/pub...KC=A1&FT=D&ND=&date=20081224&DB=&locale=en_EP
Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support. https://disability.royalcommission.gov.au/submissions-and-private-sessions/narratives/leonna
People can still access this online ME/CFS art exhibition at the moment --- https://mecfssa.org.au/event/forever-in-lockdown Event on 01 August, 2024 Forever in Lockdown SALA Gallery ME/CFS SA Online Venue 1-31 August 2024 Remember COVID lockdowns? Imagine if the lockdown never ended. This is the experience of our artists who live with the disabling illness, ME/CFS. We are online/post only community of people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in SA. People with ME/CFS are amongst the most disabled in the community and many rarely leave their homes or even their beds. Social isolation is common and people turn to us for social support. The public understands COVID lockdowns, but we ask them to imagine what it is like if the lockdown never ends. Art is a way to cope with the realities of living with chronic illness, use our talents and connect with the outside world. All of our artists are disabled artists and their carers. Art is created in ways that may seem unusual such as from a bed or using aids or accommodations. Thank you to Jo-Anna Robinson (PhotoJo) for her contribution to the photography.
A number of LC-related papers in the Medical Journal of Australia today (Volume 221 Issue 9 Supplement, 4 November 2024): https://www.mja.com.au/journal/2024/221/9/supplement
The "An allied health model of care for long COVID rehabilitation" one is basically a celebratory marketing brochure congratulating how smart and effective their exercise rehabilitation model is and how it should be a standard for the future. It reads about exactly as you'd expect from the title. Straight up clueless wish-based health care. One thing that this has all made clear is that there is nothing good that will come out of health care barring a research breakthrough. They don't know what they're doing, and they can't see that they don't know what they're doing. It's all useless hopeless junk, completely detached from reality.
And it's very difficult to achieve the funding for said research without the support and demand from the clinicians, so that breakthrough is indefinitely delayed. Quite the vicious cycle.
