Identifying Digital Endpoints For Fatigue To Drive Better Clinical Care And Treatments

Sly Saint

Sly Saint

Senior Member (Voting Rights)
By Michele Veldsman, Ph.D., member of IDEA-FAST & director of neuroscience, Cambridge Cognition


Fatigue, a medical complaint that has confounded medical professionals and researchers for decades, conceals a profoundly challenging journey for those burdened by its effects. Chronic and severe exhaustion inflicts debilitating consequences, casting a shadow over the lives of countless individuals. Regrettably, pursuing medical understanding and effective treatment often proves futile, leaving those affected feeling marginalized and misunderstood. This frustration is further exacerbated by mistrust and skepticism from the medical community and society toward this condition.

The U.S. Department of Health & Human Services estimates that as many as 23 million Americans may have developed long COVID-19 since the pandemic started.1 More than 17 million people in Europe also have reported symptoms2, with fatigue the most persistent. Fatigue isn’t confined to long COVID; it spans a broad spectrum of diseases, from neurodegenerative disorders such as Parkinson’s disease (PD) and Huntington’s disease (HD) to inflammatory conditions like rheumatoid arthritis (RA) and inflammatory bowel disease (IBD). It also can manifest without any known underlying health conditions. Yet, despite the staggering number of sufferers, doubt about the legitimacy of the condition persists.3

The struggle to achieve recognition and acceptance of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been arduous. A significant obstacle in securing medical acknowledgement of fatigue is the lack of comprehensive and accurate biomarkers.
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full article
https://www.clinicalleader.com/doc/...rive-better-clinical-care-and-treatments-0001
 
A significant obstacle in securing medical acknowledgement of fatigue is the lack of comprehensive and accurate biomarkers.

A significant obstacle in securing medical acknowledgement of fatigue is the lack of funding for a comprehensive research program for accurate biomarkers.
 
Yet, despite the staggering number of sufferers, doubt about the legitimacy of the condition persists.
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Is fatigue a condition? Bit weird to frame it this way. It's a symptom, and symptoms can only be self-reported, by definition. It's the most common symptom in all medicine, and yet oddly enough, it's largely doubted, even disputed. Which is incredibly odd: it's the most common, and yet that makes it even more disputed, with the common dismissal of "everyone gets tired", coming from people who are familiar with sick people so weak they cannot even turn in bed. Because what they don't understand, they are taught to dismiss, which is the real underlying problem.

And there is a big question of what if there is no biomarker for fatigue? No single, unique one anyway, which is the demand from the medical profession, because they found many of those and cannot think outside of that paradigm. Sometimes when a system is overstressed, in the sense of overreaching its ability to perform, it just performs less and less, then breaks. That is the marker in itself: the loss of performance. Then the break. We see both. And they are both disputed, simply because in biology, sometimes systems repair themselves.

Just the same with materials and stress testing, if you try to bend something, say the wing of an airplane, to its breaking point, you may see a bit of heat, you may see some microfractures, if you look deep enough, but until it just breaks, you will basically not see anything significant. There is only the sum of many small things reaching their breaking point. Then it will snap, but it will have been in a weak state before then. And in medicine, the general thinking aligns with stressing it even more, with applying more force, which is plain silly.

It's sad but it's really the lack of holistic thinking that sinks everything, with holistic thinking in medicine having been instead taken over by blatant quackery. And the fact that there is no math to solve disputes. In all other disciplines math is the thing that ends debates, and medicine just doesn't have it, and there is no plan B when plan A fails, the only accepted plan.
 
IDEA-FAST is a pioneering collaborative effort under the Innovative Medicines Initiative. This consortium brings together an alliance of 46 partners spanning 15 countries, including academic institutions, nonprofit organizations, patient groups, pharmaceutical companies, and technology partners. Their collective mission is to develop digital biomarkers for fatigue and sleep disturbances and track their relationship to activities of daily living and health-related quality of life. The study will involve the recruitment of 2,000 patients with neurodegenerative conditions like Huntington’s and Parkinson’s disease, as well as individuals with immune-mediated inflammatory diseases such as IBD, primary Sjogren’s syndrome, rheumatoid arthritis, and systemic lupus erythematosus.
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