UK: Aberdeen Uni: Major new study aims to increase understanding of fatigue

Innovative research using AI led by the University of Aberdeen aims to find better ways of managing and treating fatigue.

Many people struggle with fatigue which can be the result of medical conditions like long covid, stress or simply because of modern lifestyle. This makes it difficult for doctors to understand whether patients are tired as part of every-day life or whether fatigue may be a symptom of a more serious medical condition.

Researchers are now working with men and women who have fatigue related to long covid, myeloma (a type of cancer), heart failure, and people who do not suffer from one of those conditions and do not experience problematic fatigue in the study which will look in depth at fatigue patterns in different people.

https://www.abdn.ac.uk/news/16714/

 

Exhausting search for solutions to UK’s sharp rise in tiredness

"Rosalind Adam, an Aberdeen GP, and her colleagues are dealing with more people than ever reporting extreme tiredness, even taking into account their increased workload. “The thing is, we are seeing so many patients a day now,” she says.

Research suggests that 5-7% of people seeing their family doctor complain about fatigue, says Adam – already an enormous number given the 300m GP appointments in Britain each year – “but I think we are just seeing the tip of the iceberg,” she adds, given many patients will focus on other complaints first. And that doesn’t count those soldiering on at home – or the ever busier GPs having to deal with ever more patients.

Everyone, it seems, is absolutely shattered – and it’s doing us no good at all. We know we ought to be exercising and eating well to keep healthy and help us sleep, but as a survey published this week revealed, one of the main reasons Britons don’t live healthier lifestyles is because – oh the irony – they are too tired.

Tiredness matters. Economically, the cost to the UK economy of sleep deprivation has been put at £40bn a year. The number of Britons too sick to work at all is at a record high, ONS figures published this week revealed, boosted in part by those suffering from long Covid, which is often characterised by debilitating chronic fatigue. The cost of living crisis means more and more children are turning up at school tired and hungry, with almost nine in 10 teachers saying some of their poorer students are too exhausted to concentrate in class."

https://www.theguardian.com/lifeand...-search-for-solutions-to-uk-rise-in-tiredness

 

The funding notice.

Digital Health: Innovative engineering technologies to improve the understanding and management of fatigue

Fatigue is considered as a "final common pathway": a vague clinical symptom that can result from many different diseases and mechanisms. Our limited understanding of fatigue stems, in part, from its subjective and fluctuating nature and its complex interplay of parameters associated with "tiredness" such as sleep, exercise, and mood. This project will investigate sensory technologies to objectively, accurately and unobtrusively measure fatiguability, as an indicator of fatigue. These measurements will be correlated to sensed data (activity levels, sleep, heart rate, and others) and individuals' self-reports. Granular details will be obtained about patterns in the human fatigue experience. The results will reveal whether there could be distinct, clinically relevant fatigue phenotypes. We will also use longitudinal research (studying participants closely over a several week period). To date, longitudinal fatigue research been limited by statistical analysis methods (such as multilevel modelling) which are unable to detect subtle or complex relationships between fatigue and related life-style factors over time. We will use artificial intelligence algorithms to help analyse and classify these correlations within the sensed data, self-reports and qualitative data.

https://gtr.ukri.org/projects?ref=EP/W003228/1#/tabOverview

 

I don't think I've ever seen a coherent explanation of what that even means. It doesn't even make any damn sense.

 

Looks like Rosalind Adams was working at a pain clinic: http://scotlandgptraining.blogspot.com/p/rosalind-adam-salaried-gp-and-academic.html

 

Her writing style suggests that she may be a pragmatic and sensible individual. She at least is interested in chronic symptoms. She will have been through the 'multidisciplinary' circus but that need not mean that she cannot see the wood for the trees.

The sentences 'These measurements will be correlated to sensed data (activity levels, sleep, heart rate, and others) and individuals' self-reports. Granular details will be obtained about patterns in the human fatigue experience. The results will reveal whether there could be distinct, clinically relevant fatigue phenotypes.' sound encouraging to me. I think this is the sort of groundwork needed. It is the 'granular details' that we need to know about rather than just more or less tired.

 

Feeling fatigue or tired all the time sucks all the pleasure out of life so it is a goods thing to try to get to the bottom of it. From our point of view the problem has always been that ME is not just the far end of the spectrum of fatigue. Once that is acknowledged and that a cure for fatigue is not a cure for ME there may well be people with ME who also experience fatigue so it could a benefit to some of us as well.

 

Fatigue is a nonspecific symptom, like headaches or word finding difficulties: they are associated with lots of different conditions but in isolation they are not necessarily indicative of any particular individual condition.

With headaches, generic medicines may work for some forms of headache but not for others; some forms of headache may need specific treatments related to the underlying condition. It is possible that fatigue is equally diverse, that some forms of fatigue are potentially treatable by a general fatigue intervention, but other forms will need specific treatments related to the underlying condition.

Any study of fatigue in general will need to be able to distinguish fatigue that would respond to general fatigue treatments and fatigue that may need a condition specific response.

 

Would it be useful for patients to try and identify particular activities or situations that cause a change from feeling okay to abnormally fatigued?

I think it's often assumed that ME/CFS patients are tired all the time. I find that throughout the day I can easily switch back and forth between exhausted and okay multiple times. And I suspect most of it is due to specific activities like digesting a meal or walking.

 

If they changed it to "modern living conditions", it would make sense in Britain. Huge swathes of the population lives with chronically insecure housing, too little income to cover their costs, exhausting and often menial work in stressful conditions, an uphill battle to access all basic services, constant exposure to noise and air pollution, and no prospect of any of it getting any better.

It'd be astonishing if they weren't fatigued, depressed, and anxious, and whilst GPs might be at the sharp end of it, there often isn't much they can do to solve the underlying problems.

That is probably a useful starting point, it'll be interesting to see if they're able to draw anything out of it.

 

Which is basically luxury living compared to 99% of our ancestors. Modern living conditions are absurdly higher than the entire world history prior to the mid-20th century. At least for those of us privileged to live in rich countries. They talk about those modern conditions as being worse, the whole idea is ridiculous.

And there's more than Britain to the world, I had a super easy life with none of those issues and it changed nothing. It's just mindless propaganda, the same that leads to people look back at how things were so easier in the past. When they were children. And didn't know a damn thing about all the awful stuff in the world. Not serious at all.

 

I'm sorry but the whole premise of this study is disingenuous and preposterous. The idea that doctors can't distinguish different types of fatigue because they all look the same is laughable. As a severe ME patient, my level of disability is extreme, unfathomable, impossible to grasp even for a person that is dying of cancer. And even I pale in comparison to patients who are so extreme they can't even leave their bed or use their phone at all. You're telling me you need to use AI to look at the granular details to tell that apart from healthy people?! Anyone my age that i know (aside from ME patients) can work 15 hours a day no problem.

The reason doctors can't tell different types of fatigue apart is because they don't think your fatigue is real. They have been trained to think you are complaining about nothing and fatigue is not a medical problem but a psychological one. By the way, that's what they mean by fatigue being caused by "modern lifestyle". Our society is competitive and the losers manifest their discontent as fatigue. That's why there is so much focus on "coping". Social programs are meant to condescendingly handle your "loserness" while the winners run the show. If Elon Musk started complaining about fatigue, no doctor would dare tell him it's because he works 18 hours a day (or however much he claims to work).

As far as medicine is concerned, fatigue is what happens when you are unable to cope with being a loser. That's why doctors show disdain and disgust. A study like this isn't going to change anything, it just adds insult to injury by going with this narrative that doctors can't tell what going on. They can, they just don't care because they think you're either a loser who can't cope or a lunatic.

The only useful behavior to study here is the ones doctors exhibit in front of these patients. If psychology had any scientific merit to it, maybe it could figure out a way to make prejudice within medicine less extreme. But it can't even see its own prejudice, so I'm not very confident it can see any.

 

The thing is, to get through medical school and residency, you need to have huge energy levels and endurance. So of course they can't fathom what it's like to be us. I don't think the abuse will ever end.

 

To me you are missing the point. The looking at the granular details is NOT to distinguish from healthy people, clearly. It is to distinguish different forms of fatigue in the hope of getting clues to the different causal pathways. People dying of cancer and heart failure are certainly as fatigued as people with severe ME. One of my colleagues died recently and although he was able to speak softly, he made no other movement for the time a spent with him. People with very severe heart failure are often unable to talk or raise an arm.

A lot of doctors have no idea - I agree. But this proposal looks to me at least sensible and potentially pretty useful. How are doctors supposed to understand the problems of ME if they only see patients occasionally for a brief period? We monitor all sorts of other problems over periods of time to get information you cannot get from an appointment in clinic.

 

The more I look at it, the more it seems like the main problem is differential diagnosis being the one and only model, with no plan B. Technically plan B is the BPS model, which even worse than having no plan B.

And something that bugged me but couldn't identify in the latest RECOVER paper made it all in focus: they made the definition worse, carrying less meaning and understanding, just so it could be a special differentiable snowflake. It's worse, simply because it has to meet the arbitrary criterion of being unique. So if a unique but irrelevant feature, like a skin mark, were to be a feature of ME, medicine would entirely obsess with this skin mark and neglect everything else, because it's the only differentiable feature.

Except most illness isn't unique, certainly doesn't have unique symptoms. But the obsession with this is everywhere. From the start it was "here are the symptoms of COVID", except they are also the symptoms of basically hundreds of illnesses and diseases, and they vary a lot. And most of the media framing over this latest paper is in some form of "here are the 12 symptoms to check out", when in fact those are simply the symptoms that differentiate it somewhat, but not really since so many of us have high scores despite never having had COVID. That it always plays out the same in practice, "X doesn't have this symptom" doesn't seem to bother anyone. It was especially absurd in the first few weeks and months, obsessing over travelling to China or having a very specific cough.

The main interface between patients and physicians is based on a lie, or at best a misunderstanding. That any illness or disease HAS to have unique features, so that it can be differentiated by physicians. But this is not actually a feature of the illnesses, it's a feature for physicians, by physicians. Which is the same problem that the latest "12 symptoms" paper did: it makes all definitions worse, so that it can meet the requirement of being that special snowflake that can be identified at a glimpse.

And that process works fine for most issues. It's the lack of a plan B that breaks everything. If weather science were that foolish, hurricanes wouldn't exist to them, or at least wouldn't be a concern, since there's nothing unique between one hurricane or another, all the damage is common to not only all hurricanes, but in fact many other types of natural disasters. This model is simply absurd in real life.

Far worse is officially using complete BS as if it acts like a plan B, when actually the BPS model is so much worse than no plan at all. This is dogma, arbitrary and capricious, mostly informed by historical needs that don't exist anymore. Most of the diseases medicine worked on before it became scientific were the most obvious, visible ones. They had scabs and pustules and bleeding from many orifices. They were easy to differentiate, and so this is what they focused on. But this legacy requirement, a huge technical debt, carries on even though it's clearly causing more problems than it's solving by now.

But this is fundamental medicine, basically untouchable, it's the cornerstone of all clinical practice. And it would be fine, if it respected the fact that uniqueness is not actually a feature of illness and disease, it's only a shortcut to identify some and is only useful to physicians in a differential diagnosis process, if it applies. And for a while it may have seemed like it covered most health issues, but more and more it looks like it's actually a minority.

Especially when you consider that the exact reverse principle is applied to the BPS model and everything mental health, where merely being unable to differentiate is used to assert one thing or another. "It could be anxiety" basically carries the same weight as 3 independent validated tests. The double standards especially break that process entirely, and is probably behind the obsession with blaming everything on "mental health", where nothing can be differentiated with current technology.

 

Is it though? Or is it semantics and connotation/denotation masquerading as science?

Are there different types of nausea? Or, instead, varying degrees and causes? Ultimately, isn't nausea a downstream effect?

I worry the fatigue thing is a forever stretching, winding dead-end, deflecting our energies and focus from distinguishing the sources of what is a downstream effect.

 

Yes. That is not necessarily the same thing as labeling different types of fatigue. I fear that may prove to be the endpoint of efforts such as this.