Interesting podcast. The 3 doctors with long covid all have very different problems. One has potentially life threatening blood clots in his head and is on Warfarin treatment, one has neurological damage to the spine leading to needing to use crutches to walk and other symptoms and is still under investigation, and the third had what she diagnoses as dysautonomia and has improved on beta blockers that help control her heart rate.
Ah, well, now we know how to fix this: just give physicians every disease so they can learn from experience, which is clearly the only way to really understand anything. Unless someone has a plan B? Maybe something involving listening to patients and following the evidence, with science and all, so this is not necessary? The inability to learn from experience as an observer is maddening. If one has to personally experience something to understand it then we are not dealing with expertise and this needs to be fixed at a fundamental level. We could have avoided all of this and instead here we are 16+ months into it and barely a few thousand people seem to have learned anything useful out of it, still not quite reaching where we were 3 decades ago and all the work done so far is barely playing catch up, mostly out of obvious dedication to avoid the inevitable conclusions.
CASEY STONER TALKS ‘TERRIBLE’ CHRONIC FATIGUE, DUCATI’S ‘ZERO LOYALTY’ TO RIDERS For those who don't follow motorbike racing, Casey Stoner is a two-time MotoGP world champion, who - as a surprise back then - retired at the age of 26, at the very height of his career: Stoner now believes a misdiagnosis of being lactose intolerant earlier on in his racing career was in fact Epstein-Barr, an energy-sapping illness that has halted the career of several riders. The Australian believes he was racing on while suffering with the virus and which doctors believe would go on to trigger his current condition. “I raced with Esptein-Barr but chronic fatigue syndrome is a whole other level,” he told Australian Motorcycle News in a wide ranging interview. “It’s been terrible. I didn’t believe it existed. It started after I had my injured shoulder reconstructed in 2018. “When I began training after the operation I was collapsing halfway through gym sessions. Eventually I got diagnosed with chronic fatigue syndrome. I spent six months never getting any further than from the bedroom to the couch. That was it, that was my day.” Full article: https://www.visordown.com/news/raci...e-chronic-fatigue-ducatis-zero-loyalty-riders
@Wyva posted about an interesting article here:Possibility of ME or PVFS after COVID-19, Long Covid Here's a direct link to the article: https://www.9news.com.au/national/r...yndromes/ff3bc951-4fce-4448-82b5-9ed605a81bf9 There's mention of support groups for people dealing with post-Ross River Virus symptoms: There's also mention of virologist Lara Herrero at Griffith University Also worth noting the journalist who has written a sympathetic article, choosing credible people with post-viral symptoms to illustrate the issues.
ME/CFS Australia have called for Australians with ME/CFS to lodge a submission to the Disability Royal Commission. They have produced a guide to help with preparing submissions: The Royal Commission's submission page is here: https://disability.royalcommission.gov.au/share-your-story/make-your-submission I believe that submissions will be open for some time yet but will update if I discover a deadline. [Edit: it may be as late as Feb 2022] If I am well enough, I plan to write to them about: - the disgraceful way we are treated by medical professionals - the outdated, harmful ME/CFS treatment guidelines - the lack of monitoring of harms from psychological treatments - the institutional failure that led to the above - discrimination (eg, lack of access to telehealth and work from home) I hope others can lodge submissions also.
I did a private submission over zoom. It was easier than I thought. Disability Advocacy services are also funded to help people with their submission. I had an advocate help me prepare and write a follow up written submission to add to my verbal submission.
There was a hearing in the Senate a couple of days ago about issues people face accessing dsp. Victorian senator Janet rice had a nice tweet thread raising awareness and expressing support for people with mecfs and other chronic illnesses. https://twitter.com/user/status/1454993092306608130 https://twitter.com/user/status/1454993625746530304 https://twitter.com/user/status/1454994092253798407
Australian former MotoGP champion Casey Stoner gave a press conference at a recent meet with some details of his mecfs experience: https://amp.nine.com.au/article/32da344b-0fc1-40a9-9b62-faefab4a2d33 For the first time in more than three years, Australian legend Casey Stoner made an appearance at a MotoGP event. It comes after the two-time MotoGP World Champion revealed in 2019 that he had been diagnosed with Chronic Fatigue Syndrome (ME/CFS), which impacts on sleep, causes profound fatigue and difficulties with memory. "I got to the point where I couldn’t get off the couch basically for five months. From bed to the couch was my exercise for the day. I couldn’t explain anything, we couldn’t understand anything." “Trying to learn how to conserve energy through the day. Learning what hurts me long term versus what not necessarily makes me better, but reduces the effect of my issue.” “Because people can't see it, it's not a physical element that people can see, so people aren't taking it as serious. “They all just go, 'you're a bit tired, get up'. “Currently we have no cure. We don't have enough information on things that can help." “The amount of positive feedback I've had since coming out and telling the public that I have ME/CFS - it's nice to know people are out there willing to help recognise and understand the situation isn't good for people. “I hope other people out in the world can get support and this is what we're doing.” Also covered online on fox sports ("chronic fatigue battle" ugh), daily mail, Yahoo sports, news.com.au and some specialist MotoGP outlets.
Parliament of Australia Community Affairs References Committee 01/11/2021 Purpose, intent and adequacy of the disability support pension https://parlinfo.aph.gov.au/parlInf...0002;query=Id:"committees/commsen/25252/0003"
Organisation : National Advisory Advocacy Council for ME/CFS Research https://probonoaustralia.com.au/vol...a-dynamic-new-science-focused-not-for-profit/
I hope our Ausralian members can enlighten us about the above organisation. Their website is singularly vague. No officers of the organisation are listed. https://naac-mecfs.org/about-us-2/
Australian National University event Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 1–1.30pm Thursday 25 Nov 2021 zoom https://rsph.anu.edu.au/news-events/events/myalgic-encephalomyelitischronic-fatigue-syndrome-mecfs
https://twitter.com/user/status/1465378472784769027 More on the Specialised Health Clinics here:Australia and New Zealand clinics: Specialised Health
‘Faceless monster, secret society’: Women's experiences navigating the administrative burden of Australia's National Disability Insurance Scheme https://onlinelibrary.wiley.com/doi/10.1111/hsc.13669?af=R We've created a thread for the paper here: 'Faceless monster, secret society': Women's experiences navigating ... Australia's National Disability Insurance Scheme, 2021, Yates et al
