Merged thread Ruth has both ME/CFS and long COVID. Are the conditions linked, and is there a cure? Ruth has both ME/CFS and long COVID. Are the conditions linked, and is there a cure? - NewsFinale
I don't really like this framing of "years behind". Behind who? No one is ahead when everyone is behind. So that's not behind, it's just wrong. It's not even fair to say that the guidelines reflected the evidence at the time, the evidence was never there, it simply came from assertions that have been fully debunked since, a fact that has not been acknowledged. Those are two very different things. As different as imprisoning someone on genuinely flawed evidence such as false testimony that a witness later recanted vs. on evidence made-up by the prosecution and lack of ability to prove innocence. One is a passive failure, the other is active and plain wrong.
For Queensland government's statement on Long Covid, see this thread: Australia: "Long COVID" Living evidence summary
“newsGP is the RACGP’s news hub, designed to keep Australian GPs informed about the latest in general practice” https://www1.racgp.org.au/newsgp/clinical/we-need-to-find-a-treatment-world-leading-research ‘We need to find a treatment’: World-leading researcher’s long COVID plea Alisha Dorrigan 11/12/2023 4:38:25 PM Dr Ziyad Al-Aly has lamented the lack of options for people with long COVID, saying they deserve treatment ‘yesterday’.
This is a discussion on ME/CFS on Melbourne's RRR radio with sufferer Eliza Charley (she's fairly active on Twitter). https://twitter.com/user/status/1735048438927253969 Direct link: https://www.rrr.org.au/shared/broadcast-episode/27402/1053000/2775000 I've only managed to listen to the first few minutes, but she speaks well.
Host (05:42): "It's interesting to me. I have a similar experience with my family ... a person with POTS, endometriosis and so forth. As a scientist, what I come up against a lot is what I would consider a non-scientific approach to certain healthcare." Mum (a career scientist): "Yeah well I think initially ... well I knew she was sick and I knew it wasn't psychosomatic. But you know, you follow what the medicos are saying. And you see it making them worse. [...] My husband Andy who's a professor at Melbourne Uni ... we thought we've really got to look into this. And it became clear to us that there's a disjunct between what the scientists are doing in the research, which is extensive and building huge amounts of knowledge, and what's filtering through to the clinicians. I don't totally blame the clinicians - they've got a lot to get on top of and this stuff is very premature, scientifically."
Host (18:47): "So Ros you and I, I think, are a bit old-worldly ... in our approach to science, in terms of falsification, Lacanian model of science, and the way we approach science. And this is one of the things I've struggled with in healthcare, is that there are many providers who don't seem to follow what I would consider the scientific method. They seem to sort of jump a step, if you will, to a conclusion without necessarily gathering enough information to make that, or at least try and falsify that conclusion in any way, shape or form. This seems to be the problem here in some sense where there's an old paradigm that we need to shift — and yet the impetus to shift it is coming not from within, but potentially from without." Mum (Prof Ros Gleadow): "Yeah exactly, and I think in terms of the way science progresses, there is resistance. [...] But then you have new ideas and eventually you start accumulating, as Kuhn would say, you accumulate the anomalies in the paradigm. That's absolutely where we're at now. And then you get to a crisis [...] everybody now, all the new people now, know something's wrong with the old way of looking at it."
Which is exactly what patients and decent scientists have been saying for decades. The so called paradigm was indeed developed, as they say, with a step in the scientific method missing, there was no attempt at falsification. They made it up and set out to 'prove' it in trials carefully designed without objective primary outcome measures that do falsify their hypothesis and without proper means of collecting evidence of harms. It's so sad to see 30+ years on from the rise of BPS, that people are having to go through all this again. The paradigm shouldn't need shifting if scientific methods had been used in the first place. We need more people like this to join us on S4ME to help with the fight against anti science and with supporting good science.
What does falsification mean in the scientific sense? I only know it from falsifying ID's, money etc. It always struck me as odd to want to falsify a hypothesis.
A scientist wanting to test a hypothesis should do everything they can to try to disprove it. If you only look for things that support it, you haven’t proved it's correct, just that there is some evidence supporting it. Whereas if one of your attempts to falsify it works, you know for sure it's false. A silly example: Hypotheses - all dogs have 4 legs. You study thousands of dogs, and find they all have 4 legs. That doesn't prove it's true, just that it looks like it might be true. A single dog with 3 legs limps into sight, and bang goes your hypothesis.
Alright, ty. In that sense unfalsifiable means that there can't even be an attempt to prove it wrong? Like me saying there's a planet that's out of range of all our measuring equipment or something like that? It's nice that I say that, but because it can't be measured it can't be proven true or false?
Ironically, this is exactly what evidence-based medicine is supposed to do, but instead it massively reinforced the old ways, essentially created an entire industry out of cheating. The new way is the old way, industrialized, elevated higher than before. The outcome is significantly worse than the old way, because the old way has become so much harder to fix. But it's called evidence-based medicine. What reasonable person would argue that medicine shouldn't be based on evidence? Except EBM itself isn't even built on evidence, but the very name says that it is. This is a very hard problem to solve. It's a wholly human problem, which means there are no technology solutions, outside of AI anyway. So really what we are faced with is the giant task of getting medicine to admit that it based much of its own decisions over the last few decades on a pseudoscience they built themselves, and used to make billions of decisions that did enormous harm while standing right below a wall with giant bold lettering spelling "FIRST DO NO HARM". In a profession with giant egos where accountability happens in secret and the main stakeholders, the patients, have zero influence. It's a task as hard as moving from monarchy to democracy, it doesn't happen because the people in charge want it to. This is so much worse than astronomers still believing in astrology, since astrology is ancient fairy tales, while evidence-based medicine was developed in the 20th century. It's too much embarrassment, it's hard to imagine any other scenario than superintelligent AIs overcoming this, it takes a higher authority to get authorities to admit mistakes.
Exactly. This is known as Russel's teapot, who argued that you can't prove that there isn't currently out there a teapot orbiting the Sun. The space is too vast, by the time you fully examine one place, the teapot could have moved just out of the way. It basically boils down to "you can't prove a negative", you can only find an exception that disproves it, because all it takes is one. It's a known logical fallacy, in fact it involves several logical fallacies, and medicine built its entire modern paradigm around it. It's so absurd that it's impossible to get through to people, it's too much incompetence at such a fundamental level. Even more absurd, is that much of medicine has convinced itself that this "pyramid of evidence", all of which is significantly below what every other standard of evidence in all the other professions demands, is actually higher than experimental evidence. This is why so many MDs have convinced themselves that they can ignore the physics behind masks and respirators because there aren't any RCTs showing it, even while they talk about washing hands and coughing into your elbow as important measures, which don't have any such evidence either. It's all completely arbitrary in the end.
ABC News (Australia): "How Dave Clark regained a meaningful life after developing chronic fatigue syndrome" https://www.abc.net.au/news/2023-12-08/dave-clark-on-living-with-chronic-fatigue-syndrome/103071294 2-minute video of Dave reading his poem plus a separate text piece by him
No idea whether this says anything interesting or not. SUBMISSION TO THE DRAFT NATIONAL DISABILITY ADVOCACY FRAMEWORK 2022-2025 DATE SUBMITTED: 12 JULY 2022 Author: Erica Elle Founder, Brisbane ME/CFS Support Group Member, Queenslanders with Disability Network Member, Women with Disabilities Network Australia Contributor: Kathy Dallest Co-facilitator, Brisbane ME/CFS Support Group Secretary, Fibromyalgia ME/CFS Gold Coast Support Group, Inc. Chair, National Advisory Advocacy Council for ME/CFS Research Ltd. https://engage.dss.gov.au/wp-conten...-July-2022-Submission-Attachment_Redacted.pdf
(ABC Australia) Federal government's response to long COVID inquiry a 'missed opportunity', experts and patients warn https://www.abc.net.au/news/2024-02...-government-response-medical-health/103483536 Include some comments from Emerge Australia CEO who mentions ME/CFS a few times
Emerge Australia Inc Catch last night’s media interview on the ABC’s Nightlife here. It’s not all in their heads! Phillip Clark hosts an action packed 49 minutes with Emerge Australia’s Chief Executive Officer Anne Wilson, Medical Director Dr Richard Schloeffel OAM and Medical and Scientific Advisory Committee Chair Professor Paul Fisher. https://www.abc.net.au/listen/programs/nightlife/chronic-fatigue-syndrome/103457948
New research funding announcement. See this thread: $720,000 grants to 2 La Trobe University researchers from the Mason Foundation for ME and long Covid research
