Yes, thirding this. Really helpful presentations. It is way past time that Australia had some decent clinical guidelines for ME/CFS.
A long article by Hannah Sharland with lots of details. The article can be listened to as well. quote: A group of Australian scientists recently gas-lit an entire global community of more than 65 million sick people. Specifically, on Long Covid Awareness Day, Queensland state department researchers, spearheaded by its chief health officer, pushed a half-baked study to trivialise the devastating condition. However, the situation has direct implications for people living with ME/CFS in Australia. In the long-standing context of the medical and media establishments’ disgusting abuse of chronically ill people in Australia – it’s plain to see how it could do this so easily. In particular, an elitist and vested psychologising lobby has hijacked care and support for millions of people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)- a similar post-viral disease. In Australia, as elsewhere, they have paved the way to punching down on long Covid patients. And if the experience of people living with ME/CFS is anything to go by, the abuse has only just begun. https://www.thecanary.co/global/202...ering-me-cfs-in-australia-wrote-the-playbook/
Meanwhile in Victoria, the Herald Sun reports: Eight and nine-year-old Victorian kids, scores of teens, with long Covid amid frightening illness rise Victoria is hurtling towards a generation of young people off work because of long Covid — some eligible for NDIS disability support pensions — with potentially devastating consequences for the state. Archived
Long COVID: Sufferers can take heart Australian Journal of General Practice https://www1.racgp.org.au/ajgp/2024/april/long-covid-sufferers-can-take-heart Although the Australian Bureau of Statistics and other health agencies in Australia do not survey the prevalence of long COVID, it is estimated that it affects hundreds of thousands,2 presaging a parliamentary inquiry into long COVID4 and repeated SARS-CoV-2 infection,5 which reported to Federal Government in April 2023.6 The 566 submissions to the Inquiry, including those from states, territories, professional bodies and the public, largely concur with the view that long COVID presents health management and sociological challenges to Australian society (conspicuously, the Queensland Government has a somewhat different perspective, attributing long COVID to a predominantly nocebo effect7). ... Long COVID is a heterogeneous disease with variable cardiac, pulmonary, haematological and neurological involvement in which investigation of patient-reported symptoms is frequently unremarkable. Long COVID’s overlap with myalgic encephalomyelitis/chronic fatigue syndrome, postural orthopaedic tachycardia syndrome (POTS) and other post-viral manifestations8 predisposes to a diagnosis by exclusion.9,10 ... Often unable to secure a diagnosis, patients are wont to seek multiple serial medical opinions, frequently being told their condition is due to anxiety or post-pandemic mental issues.8 The median duration of long COVID symptoms is five months, but 10% of patients still experience symptoms at 12 months.12 Fatigue, shortness of breath and difficulty concentrating are reported at least up to two years after SARS-CoV-2 infection.13 It is still too early to say whether some individuals with long COVID might never recover. ... Those subscribing to long COVID digital support groups report months of frustration at not being listened to, finding the health system woefully inadequate, with few primary or secondary care professionals knowing enough to offer much. The outcome for some of those experiencing long COVID is self-prescribed medication using over-the-counter remedies and dietary changes16 based on potentially conflicting or misleading online information.17 Some speak of a substantial proportion of their income being used in this way.4 Meanwhile, jobs, careers, incomes, community involvements, friendships, relationships, hope for a recovery and mental health are being destroyed. Those experiencing long COVID report that the long COVID digital support group is the ‘… only place they feel safe to share, the only place they feel understood, accepted, [and] supported’.4 One in five of those experiencing long COVID in the UK stopped working and was not back to work six months after disease onset.18 In Australia, an estimated 240,000 of those with long COVID no longer work full time.4 Work absenteeism might significantly impact the nation’s economy, as in the UK.19 In the US, long COVID has been declared a national emergency.20
Average Victorian secondary student misses equivalent of three terms of school, new figures show Paywalled: https://www.heraldsun.com.au/victor...w/news-story/cf10e73aaec6c055c4add9920a7bc3a5 "The Department blamed illness from COVID and the flu as the reasons behind the absences for both primary and secondary schools" But then they cite several psychologists saying it's all mental illness caused by pandemic stress and/or whatever.
Maybe it's the brain fog, but I can't see anything at all in the article that justifies the headline.
I think it's somewhat of a pun about POTS, that also suggests something hopeful, but there's nothing really supporting that. Not a very good one.
Australia: RACGP: GET for CFS RACGP claim to have updated their guidance on GET for CFS, but it looks to be still completely mired in the dark ages.
Merged thread Hundreds of patients died after catching COVID in Victorian hospitals, new data shows Almost one in 10 patients who caught COVID in hospital died ABC News requested interviews with infection prevention and control experts at Western Health, Barwon Health and Alfred Health — all declined. https://www.abc.net.au/news/2024-05...-victoria-hospitals-testing-masking/103784896
There is a severe patient in Australia who appears to be in distress. I don't think I've seen it mentioned yet, and she seems to be getting no help. I'm not sure what can be done here. Anyone has any ideas?
16-page Australian report: "Urgent recommendations to improve care for people with ME/CFS and #longCOVID" https://www.emerge.org.au/wp-conten...ight-on-Recommendation-8-Emerge-Australia.pdf This was launched in Parliament House Canberra on March 27 & presented to a health minister on May 9: https://www.emerge.org.au/urgent-recommendations-to-improve-care/
Wow does that make the "updated" guideline a bit awkward, but it's not like this is anything new. The same story of systemic failure repeating itself because of, well, systemic failure.
