7 surveys are listed here. https://mecfssa.org.au/resources/surveys Participate in surveys that are relevant to ME/CFS, related conditions, health care or disability.
Open Australia (Melbourne): Study looking to develop an ocular motor marker or signature of disease for ME/CFS https://www.s4me.info/threads/austr...ker-or-signature-of-disease-for-me-cfs.28136/
I notice NCNED have lots of newsletters online https://www.griffith.edu.au/menzies...y-and-emerging-diseases/newsletters-and-media NEWSLETTER EDITIONS April 2022 December 2021 September 2021 May 2021 March 2021 December 2020 July 2020 May 2020 March 2020 December 2019 September 2019 July 2019 May 2019 February 2019 December 2018 October 2018 August 2018 May 2018 March 2018 December 2017 November 2017 September 2017
'Long COVID' presents a major health challenge - how can Australia be prepared? https://www.sydney.edu.au/news-opin...jor-health-challenge-how-can-australia-b.html It's amazing seeing not only historical revisionism happen in real-time, but it's literally erasing the present as well, even the future, basically referencing a reality that never existed but is asserted to be a fact: While clinicians are familiar with post-viral or post-infective syndromes, long COVID is new. There is no diagnostic test, and it’s likely it’s really a mixture of different conditions with different underlying causes. ... Current recommendations are to see your GP for help with long COVID. But while GPs have experience managing post viral illnesses and there are guidelines for the care of post-COVID conditions, GPs are likely to need additional support and resources to respond. ... Let’s not repeat the mistakes of stigmatising and dismissing earlier post-viral or post-infective syndromes like chronic fatigue syndrome. The devastating impact on those struggling to get a diagnosis, and adequate treatment and supports is still felt. Filed under: recognize the problem, recommend the problem, because they don't even begin to understand it. All the mistakes have been repeated, it's been 2+ years folks, the concept of preparation includes the prefix (so metameta) "pre": before. We are not in the before time. But also: what about that mistake? We just let it continue to happen? Ah, see, no because it's all good now, apparently GPs are familiar with this, nothing to worry about, CFS has never existed, also we've always known about CFS and it's all taken care of. Big Brother doesn't even have to bother hitting someone over the heard, reminding them that it's obviously West Asia we have always been at war with. No one has to care what the record says.
OzSage: Australia must plan now for a significant burden of disease and disability due to Long COVID https://ozsage.org/media_releases/a...-of-disease-and-disability-due-to-long-covid/ Says mostly the same thing as above, but doesn't bother mentioning ME, CFS, or any version thereof. It's ludicrous to think it's possible to make progress without acknowledging the giant elephant failure in the room. Also confused about the meaning of before, I guess, since it's absurd to prepare for something that's been happening for 2+ years. They recognize the problem, but they can't name it. You'd swear it's actually Voldemort given how nearly everyone dutifully avoids saying it, they really want to try to help Long Covid while continuing to neglect us. Not gonna happen, not possible. Either they help everyone or they help no one, and very few understand this, 2+ years into it. We really had no chance to get out of this without LC. Not even close.
There was only ever two ways we could get out of this - a major advance in the science or a major change in medical politics. LC opens a door for change but its not guaranteed. Even with a change in science, such as tests, treatment or a cure, it takes time for the political landscape to change, and will require advocacy to happen faster.
Excellent guide on Victoria state website https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs
Changes to the laws that govern the National Disability Insurance Scheme (NDIS) came into effect on 1 July, 2022. https://www.disabilitysupportguide..../changes-to-the-ndis-how-will-you-be-affected
https://www.griffith.edu.au/menzies...logy-and-emerging-diseases/how-to-participate How to participate National Centre for Neuroimmunology and Emerging Diseases Participate in our studies The National Centre for Neuroimmunology and Emerging Disease (NCNED) is currently recruiting participants to take part in studies throughout 2021. Both those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome symptoms and healthy controls are required for our studies. RECRUITMENT FOR CURRENT STUDIES You are able to register your interest to take part in our studies by contacting us on ncned@griffith.edu.au or by phone on (07) 5678 9283 and also by completing an online questionnaire. Below you will find PDFs relating to two studies we are currently undertaking. Please share this with anyone who you think may be interested and thank you again for your support of our research. Ion Channel Research (PDF, 499.5 KB) Neuroimaging investigations in ME/CFS (PDF, 627.5 KB) Genotyping analysis in ME_CFS (PDF, 570kb) THE NCNED ME/CFS DATABASE The National Centre for Neuroimmunology and Emerging Diseases conducts a number of studies investigating different aspects of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Each study may involve different tests focusing on different factors of the illness. As the first step of participating in any study, each participant will be asked to fill in a detailed questionnaire that includes questions focusing on areas including current and past symptoms and daily activities. All answers remain confidential. This questionnaire gives us information regarding which study you would be best suited to, but more importantly the information gathered is combined into a database that is analysed to help understand the public health impact of ME/CFS in Australia, and importantly the impact of ME/CFS on daily lives. If you would like further information or to take part and contribute to the database please complete the database questionnaire. Complete database questionnaire
Thank you! Emerge Australia provided the content for this page (and then crossed our fingers that the site managers would accept our changes). It’s not been updated for a few years, but we did a major update recently and are hoping to review it annually (or at least every 1-2 years).
podcast TeleHealth cuts to hit most vulnerable https://www.4bc.com.au/podcast/telehealth-cuts-to-hit-most-vulnerable/
Australia: NSW Agency for Clinical Innovation: Exercise and long COVID Unhelpful conclusions from elsewhere are collated; conclusion is 'more research is needed'.
Research Innovation and Discovery (RID) International Conference 2021 – Report https://www.myalgicencephalomyeliti...ery-rid-international-conference-2021-report/ The report I found was pretty light on details but did include links to YouTube versions of 2 of the talks A lot (all?) of the other presentations have subsequently been posted over a few months on the NCNED Facebook page https://m.facebook.com/NCNED
The Victorian Chair of the RACGP has written about ME/CFS in their newsletter. Compared with the usual rubbish from the RACGP, it isn't terrible, although she inexplicably links to Flottorp et al's nonsense about the NICE guidelines in the Lancet as "interesting reading".
Terrible, IMO. It describes what's happening right now as if it's the distant past. The bad old days are happening right now and for the foreseeable future, pretending otherwise is very much how those bad old days continue. Physicians still roll their eyes and deride their patients, it's literally all over social and news media and academic literature, with millions more added to it in the form of LC. It's this inability to speak the real truth that prevents any progress, it's not possible to fix a broken system without voicing how utterly broken it is, which inevitably means directly blaming people who absolutely deserve blame to a level that demands extraordinary disciplinary measures, to make sure this cycle of statutory neglect and violence ends. There is no way to build better healthcare without making the truth absolute: tell the truth, the whole truth and nothing but the truth, always, especially when it's uncomfortable. This isn't it, in fact it's the same old beating around the bush that never got anywhere.
