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Ruth has both ME/CFS and long COVID. Are the conditions linked, and is there a cure?

Australia is in the midst of but, for some people, previous infections continue to have devastating impacts on day-to-day life.
For Ruth Newport, the combination of long COVID and myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), means she is rarely able to leave the house without a wheelchair, has to take eight types of medication, and struggles with exhaustion, pain, and cognition.
There is no cure for either of her illnesses, management is complex, and they are largely not understood.

The 42-year-old first began exhibiting symptoms of ME/CFS as a teenager, but it took years to get a diagnosis.
After being diagnosed in 2009, she spent years carefully managing her condition, went in and out of remission, and developed a maintainable routine with the support of medical professionals and her husband.
She then contracted the coronavirus in January 2022, which turned into long COVID, which made her existing health issues worse and brought on a raft of new symptoms.
She developed high blood pressure, lung issues and chest pain, gut issues, hormone imbalances, light and sound sensitivity, and more.
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While Ruth had largely been able to manage her ME/CFS, the addition of long COVID was debilitating.

“I could hardly walk without massive adrenaline rushes every time I stood up and extreme fatigue, and spent most of my day having to be horizontal just because I was too weak to do much,” she said.
“I went from being able to do most of my life to not being able to do very much of it and not really having the medical support to know how to get better.”
Ruth isn’t the only person struggling with the combination of long COVID and ME/CFS, and researchers believe the two conditions may be linked.
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Australia’s system ‘years behind’
Australian clinical guidelines for ME/CFS were developed in 2002 by the Royal Australasian College of Physicians, but have not been updated since.
Marshall-Gradisnik said while the guidelines were reflective of research and evidence at the time, they have now fallen behind international standards.
“They are now some 20 years out of date now, and we have evolved with our research and clinical findings, so new clinical guidelines for Australia (should be) a priority,” she said.

“The United States and the United Kingdom update every 12 months to two years, so we are a little behind.
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Ruth has both ME/CFS and long COVID. Are the conditions linked, and is there a cure? - NewsFinale
 
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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.
 
Dolphin said:
RACGP’s
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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."
 
SNT Gatchaman said:
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."
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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.
 
Trish said:
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.
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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?
 
SNT Gatchaman said:
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."
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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.
 
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Solstice said:
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?
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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.
 
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
 
https://www.facebook.com/emergeaust...GKgPALx9FZXM5otDoz8Hv2Glnowrn5Y1&__tn__=<,P-R
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

https://twitter.com/user/status/1757190912931922219
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