Assessing fatigue and sleep in chronic diseases using physiological signals from wearables: A pilot study 2022 Antikainen et al

Regarding that Newcastle Hospital article
Interesting that there is such as recognition of fatigue as being such a troublesome symptom.

Julia Newton is part of the Newcastle-upon-Tyne NHS, she ran (runs?) the fatigue Clinic there and seems to be seen as an expert on fatigue in that region. On paper, she would be the ideal person to collaborate with Prof Ng on investigating the use of wearables in ME/CFS. I'm not sure, though, about what her views about ME/CFS really are (she has at times seemed to be in favour of GET), and the fatigue clinic seems to leave people with ME/CFS to the Newcastle CFS service. That CFS service made some of the worst comments we saw in the NICE consultation process. Maybe people in that region know what is really going on there - it's rather confusing from here.

Anyway, perhaps someone could approach Prof Ng to see if he could do a project on monitoring using wearables in ME/CFS? A Professor in Rheumatology - perhaps you know him @Jonathan Edwards?

Excerpt:

"Newcastle Hospitals is leading the IDEA-FAST study, which aims to find effective ways to monitor symptoms in patients with chronic disease.

The study involved patients with neurodegenerative and inflammatory diseases, where fatigue can have a major impact on quality of life.

One of the common side effects of chronic diseases such as Parkinson’s disease, inflammatory bowel disease and rheumatoid arthritis are problems with fatigue and disturbed sleep. Among patients with these diseases, fatigue is often rated as one of the most disabling symptoms, affecting their daily activities and their quality of life.

Despite this, monitoring these symptoms often relies on simply asking patients to fill in a questionnaire about their experiences. This method can be affected by patients misremembering things and not having enough detail about the intensity of their fatigue throughout the day.

Small, wearable device
One way to provide more accurate and reliable results is for chronic disease patients to wear small devices to monitor these physiological signals throughout the day. In a paper published in Frontiers in Physiology, an international group of researchers used wearable devices to measure and record fatigue and sleep patterns in such patients to see how effective the technology could be.

The study is led by Prof. Fai Ng, honorary consultant rheumatologist at Newcastle Hospitals and professor of rheumatology in the Translational and Clinical Research Institute at Newcastle University.

Quality of life
Professor Ng said:

“There’s an increasing number of articles all pointing towards fatigue being one of the biggest, if not the biggest factor, leading to a loss of quality of life in these patients,” "

 

That makes sense to me, as assessing fatigue caused by the specific conditions included would be complicated by someone also having CFS.

They seem to be basing their assumptions about how to measure fatigue with a heart rate monitor on other studies that found ME/CFS patients had lower heart rate variability, so they take that as a measure of fatigue. I'm not sure how accurate that is.

 

What is that opinion based on? This paper, the IDEA-FAST project (which seems to have taken a broader approach to assessing the utility of wearables), or direct knowledge of what the group is doing? I assumed that this group probably played a role in NICE approving five devices for use in monitoring Parkinsons patients over time.

I'm not sure about the 'normalisation' work done, adjusting data. But I think even this paper (one of a series from this IDEA-FAST project) is doing more than just measuring the amount of fatigue. They seem to be trying to find strong correlations between patient reported outcomes reported in nearly real time, and data collected by a wearable device. And a big part of this particular study seemed to be just showing the feasibility of wearables for data collection.

A research partner would ideally have access to wearables and to staff with experience in getting patients to use them accurately and in retrieving and perhaps cleaning the data. And access to a pipeline of funding. They don't necessarily have to be the ones coming up with what exactly is studied.

 

The approach to fatigue and ME/CFS specifically in Newcastle seems to be variable, it probably depends enormously on which team you are talking about. There are definitely some problematic attitudes there, and I personally doubt that Julia Newton has done much to counter those attitudes. There is some evidence that she is contributing to them.
Rituximab for the treatment of fatigue in primary biliary cholangitis (formerly primary biliary cirrhosis): a randomised controlled trial
Regarding the rituximab for fatigue study that you mention, I see that Julia Newton is a co-author. Given that she has not clearly opposed BPS views of ME/CFS, I do think that it is best to keep her away from anything to do with ME/CFS.

But, this study is by different researchers. While I could perhaps pick holes in the clarity of the conclusions in this paper (I haven't read it closely enough to do that), at least they are applying technology to the question of fatigue description, paving the way for objective outcomes. As far as I can see, this particular paper is one result from an international team investigating wearables in chronic conditions. So, perhaps these people could be useful collaborators?