Australia: $4.7 million for UNSW researchers to investigate long COVID
- Thread starter SNT Gatchaman
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The lion's share ($3m) goes to research into "Symptom-focused physical rehabilitation and psychological support strategies" lead by Dr Caroline Sandler PhD (UNSW), BSc (Health & Sport, UNSW), Accredited Exercise Physiologist
What a sad waste of money and effort. Why does every country and rehab research team think they have to keep re-researching psychobehavioural rubbish? All they are doing with their so called research is tweaking what is essentially a failed model. 4.7 million dollars allocated, and less than a million of that for biomedical research. I'm sorry, Australia. What a waste.
Sorry world. But not in the slightest bit surprised. This is the reality here too, always has been.
Clearly the Anglosphere is just a complete fucking disaster on this. We created the disaster, and are doing everything we can to perpetuate and exacerbate it. Don't rely on us to save you.
All you need to know about the value of this work. Just condemning another generation of patients to failure and despair and worse.
Clearly the Anglosphere is just a complete fucking disaster on this. We created the disaster, and are doing everything we can to perpetuate and exacerbate it. Don't rely on us to save you.
She is part of the Fatigue Research program at the Kirby Institute working with Professor Andrew Lloyd.
All you need to know about the value of this work. Just condemning another generation of patients to failure and despair and worse.
V.R.T.
Senior Member (Voting Rights)
I just don't understand how it isn't crystal clear to everyone at this point that exercise doesn't help treat ME or LC.
If this wasn't ideological, it would have ceased to be recommended everywhere after the PACE reanalysis. Instead we now have nearly another decade of low quality studies pulling the exact same bullshit tricks as ever.
If we ever get out of this catch-22 and there's a breakthrough, a lot of people are going to look very gullible indeed.
If this wasn't ideological, it would have ceased to be recommended everywhere after the PACE reanalysis. Instead we now have nearly another decade of low quality studies pulling the exact same bullshit tricks as ever.
If we ever get out of this catch-22 and there's a breakthrough, a lot of people are going to look very gullible indeed.
NelliePledge
Senior Member (Voting Rights)
Money for old rope. Nauseating.
Relevant forum threads:
rvallee
Senior Member (Voting Rights)
Those are two blatant lies, and actually contradict one another. No system can deliver good outcomes by lying so much about what they do, this is completely incompatible with the general mission of health care, and specifically of the aims of this program. Might as well just go to a casino and lose it all in two minutes. It would literally be preferable here, that's how bad this whole disaster is.
If we lived in sane societies, other people with zero relation to us or any of this would sue the people responsible for so obviously mismanaging research funding. This is insulting to the entire idea of what science is about. It's not supposed to be used to prop up failed ideologies and flatter the egos of people who are completely wrong and have ruined millions of lives in the process.
Does anyone else remember the ‘totaliser’ type thing on programmes like blue Peter etc where they were raising money
It feels like one thing we could be doing to make a point in this is having totals for money thrown away onto either iterated research into something already proven as a dead end
Or apps or services only offering treatments that harm
Where it is gov funding
And particularly after a set date where new guideline would have made it clear this path was useless before anyone signed it off
It really is shocking the bs of ‘can’t afford’ for basic essential things that are common sense or just saving a life etc
When what is done instead costs exponentially times more - whether it’s people going in for a procedure to be done in a day getting trapped into hospital for months ‘because someone questioned it’ or courses or apps so useless no one completes them or if they do they end up harmed
I suspect now some of these things are used to to back cover and pretend that it isn’t 100% that someone over working gets iller or no adjustments etc by suggesting there’s always a ‘can’t prove it unless you do the same thing again that doesn’t work but has a different name’
Which is still stupid because people being mild and having to have smaller adjustments vs harming them to the point of losing independence and needing care
Is only ‘money saving’ as long as you make em so ill they did it can’t fight enough that the fight costs the other side money
And you are talking about being in a context where they and their families productivity they would have had doesn’t matter to you
I find it bamboozling, other than it showing how concentrated power is and how happy to be callously indifferent those after a cushy number for themselves are - and to how extreme an extent society will sponsor that being directed at a vulnerable group as long as it ‘keeps those types out of everyone else’s hair’
It feels like one thing we could be doing to make a point in this is having totals for money thrown away onto either iterated research into something already proven as a dead end
Or apps or services only offering treatments that harm
Where it is gov funding
And particularly after a set date where new guideline would have made it clear this path was useless before anyone signed it off
It really is shocking the bs of ‘can’t afford’ for basic essential things that are common sense or just saving a life etc
When what is done instead costs exponentially times more - whether it’s people going in for a procedure to be done in a day getting trapped into hospital for months ‘because someone questioned it’ or courses or apps so useless no one completes them or if they do they end up harmed
I suspect now some of these things are used to to back cover and pretend that it isn’t 100% that someone over working gets iller or no adjustments etc by suggesting there’s always a ‘can’t prove it unless you do the same thing again that doesn’t work but has a different name’
Which is still stupid because people being mild and having to have smaller adjustments vs harming them to the point of losing independence and needing care
Is only ‘money saving’ as long as you make em so ill they did it can’t fight enough that the fight costs the other side money
And you are talking about being in a context where they and their families productivity they would have had doesn’t matter to you
I find it bamboozling, other than it showing how concentrated power is and how happy to be callously indifferent those after a cushy number for themselves are - and to how extreme an extent society will sponsor that being directed at a vulnerable group as long as it ‘keeps those types out of everyone else’s hair’
In brighter news relating to this fund, an OMF email sent today said —
Murph
Senior Member (Voting Rights)
I do think better epidemiology might help; prospective studies. If you look at the history of AIDS and coeliac, figuring out who was getting the disease, where and when, was an important input to narrowing down the field of scientific enquiry.
For example, one hypothesis I have is that exercising while you're still sick with a certain type of virus could be the risk factor. I remember going to play sport before I'd quite recovered from my cold; i haven't been the same since (23 years and 9 months ago).
There's also clearly ages where people seem prone to developing me/cfs, and ages where people appear to be at lower risk. Why? Unpicking these kinds of questions could help the test-tube science operate more efficiently.
BrightCandle
Senior Member (Voting Rights)
Alas they are starting from the premise "Is this PIFs and will the same model therefore work/make us money?" and that is a bad hypothesis to begin with. Its one they will undoubtly use to reinforce their own prejudices, using millions of dollars that could have actually been spent on the real question or just doing more looking at things no one has looked at yet!
Ignoring details of the blatant scientific misconduct in the psychogenic research, there is some very limited evidence that exercise can help to a small extent, based on the work of Perikles Simon, an exercise physiologist in Germany. He presumes, and teaches exercise based on, the existence of hypoxia. More on that in a moment.
The first big issue is that any such research is likely to be overhyped and used to justify approaches that do not work. If we are hypoxic, and the evidence is growing that over 80% of us are, then any aerobic program will cause damage and not improvement. So will any intense or sustained anaerobic training.
The second issue is they are ignoring that these programs of psychotherapy and graded exercise have not shown to be objectively successful anywhere, in any study. They rely on subjective measures in people who are usually told to give optimistic answers. This methodology presumes the methodology works in designing the intervention, and is thus a logical fallacy in action. Studies with objective outcomes, or even long term follow up, have universally failed to my knowledge.
Multiple lines of research suggest hypoxia. Ironically I presented a paper saying CFS was hypoxia in February 1999 to a medical conference in Sydney, Australia. I gave a possible and testable mechanism. It was only a poster presentation, not peer reviewed or anything, and the mechanism was based on data that was later corrected.
A year later I was a debating partner with, amongst others, Martin L Pall, who had a different mechanism for hypoxia, though this ended in 2005 or so.
Fast forward 10 years and we have results from invasive CPET that our venous oxygen during exercise was way too high, directly implying it was not being released to the muscle for use in aerobic energy production.
Fast forward again to last year, albeit conference proceedings I am awaiting a published paper for, and we have one study that shows lack of oxygen perfusion in muscle, and another showing implied noradrenaline/norepinephrine production failure in the brain stem (LC, though in this case its locus coeruleus). This NE/NA failure means the hypothalamus is not getting signals as to problems, with implications on sleep, vascular regulation and so on. The inherited form of this disorder, not ME, has OI and exercise intolerance as standard features, with probable insulin resistance to boot (muscle will not be getting nutrients other than oxygen in enough quantity).
Further there have been numerous reports, though I think mostly anecdotal, of low blood volume in ME. This will manifest as anemia, though not be picked up by any of the standard tests.
This picture all ties together. I could go into detail, but the strong implication is that if you have ME, and have both OI and exercise intolerance (ignoring PEM, this is only part of PEM), then you most likely have hypoxia (though this inference needs better evidence). Of course this presumes the conference findings are substantiated over time.
I have been doing resistance training for years now, based on what I am dubbing the Perikles Protocol. I had to modify it for much longer rests, even days sometimes, or I run into trouble. It has halted my growing sarcopenia, and allowed me to regain a little muscle and strength. It has done NOTHING for endurance, or any other symptoms.
For any therapeutic protocol that emphasizes anything like increasing activity, or graded or regular exercise, in any patient with the probable noradrenaline or hypoxia issues, it is not only ignoring the vast evidence, but cherry picking limited and bad evidence or evidence from research misconduct, and it is implied that these treatments might cause substantive harm. Any attempt to conduct such research should have these issues, and many more, raised with the appropriate ethics committee.
The first big issue is that any such research is likely to be overhyped and used to justify approaches that do not work. If we are hypoxic, and the evidence is growing that over 80% of us are, then any aerobic program will cause damage and not improvement. So will any intense or sustained anaerobic training.
The second issue is they are ignoring that these programs of psychotherapy and graded exercise have not shown to be objectively successful anywhere, in any study. They rely on subjective measures in people who are usually told to give optimistic answers. This methodology presumes the methodology works in designing the intervention, and is thus a logical fallacy in action. Studies with objective outcomes, or even long term follow up, have universally failed to my knowledge.
Multiple lines of research suggest hypoxia. Ironically I presented a paper saying CFS was hypoxia in February 1999 to a medical conference in Sydney, Australia. I gave a possible and testable mechanism. It was only a poster presentation, not peer reviewed or anything, and the mechanism was based on data that was later corrected.
A year later I was a debating partner with, amongst others, Martin L Pall, who had a different mechanism for hypoxia, though this ended in 2005 or so.
Fast forward 10 years and we have results from invasive CPET that our venous oxygen during exercise was way too high, directly implying it was not being released to the muscle for use in aerobic energy production.
Fast forward again to last year, albeit conference proceedings I am awaiting a published paper for, and we have one study that shows lack of oxygen perfusion in muscle, and another showing implied noradrenaline/norepinephrine production failure in the brain stem (LC, though in this case its locus coeruleus). This NE/NA failure means the hypothalamus is not getting signals as to problems, with implications on sleep, vascular regulation and so on. The inherited form of this disorder, not ME, has OI and exercise intolerance as standard features, with probable insulin resistance to boot (muscle will not be getting nutrients other than oxygen in enough quantity).
Further there have been numerous reports, though I think mostly anecdotal, of low blood volume in ME. This will manifest as anemia, though not be picked up by any of the standard tests.
This picture all ties together. I could go into detail, but the strong implication is that if you have ME, and have both OI and exercise intolerance (ignoring PEM, this is only part of PEM), then you most likely have hypoxia (though this inference needs better evidence). Of course this presumes the conference findings are substantiated over time.
I have been doing resistance training for years now, based on what I am dubbing the Perikles Protocol. I had to modify it for much longer rests, even days sometimes, or I run into trouble. It has halted my growing sarcopenia, and allowed me to regain a little muscle and strength. It has done NOTHING for endurance, or any other symptoms.
For any therapeutic protocol that emphasizes anything like increasing activity, or graded or regular exercise, in any patient with the probable noradrenaline or hypoxia issues, it is not only ignoring the vast evidence, but cherry picking limited and bad evidence or evidence from research misconduct, and it is implied that these treatments might cause substantive harm. Any attempt to conduct such research should have these issues, and many more, raised with the appropriate ethics committee.
It feels like a doom loop of some sort but I just need to simplify the words to equate it.
It also at a simple level looks like the old entitlement for old dated players and those it sponsors + gravy train issue rather to me playing its hand. Which I guess is another 'loop' going on in itself the world over or at least in countries where ... does anyone have any examples where they've managed to 'separate powers' so to speak?
Or on the rare occasion when they do show a statistically significant objective result it is marginal and of little real world benefit. e.g. PACE for the 6WMT in the GET arm.
Their version of 6mwt had inherent bias, and they must have known this.
What?? Didn't she attend the presentation I did at UNSW last March along with Dr David Joffe??