Managing Chronic Fatigue using Scientific Insights from N-of-1 Studies - 2018 - Dr Suzanne McDonald, Qld Australia

your thoughts, please ?



https://medicine-program.uq.edu.au/...fatigue-using-scientific-insights-n-1-studies

 

personally, i dislike the vague criteria used in the introduction - no mention of post-exertional malaise, neurological, cardiovascular and mitochondrial dysfunction.

i dislike the focus on 'activity' and 'fatigue', where the other factors are not measured (PEM, neuro, cardiovascular, mito dysfunction, foods eaten, exposure to chemicals, etc). it might be less expensive, but omits some SIGNIFICANT factors that would affect the outcome.

and i'm aware that thousands of pwME continually monitor their activities, heart rate, emotional & cognitive events, infections, fluid intake, foods eaten, effects of delayed PEM, heart rate variability etc, in order to manage & minimise their symptoms. it seems a bit simplistic to omit the many other factors.


[edited, again] my biggest concern, is that instead of big-scale high-quality research into the biological causes and cures of ME, we get dribbles and drabbles of 'little' research, which tells us what we already know (that activities can affect our fatigue).

I WANT ACTUAL BIG BIO SCIENCE TO FIND IMPORTANT ANSWERS FOR US.

 

Decision Algorithm for Assessing Quality and Relevance of CFS or ME Study:

1. Is PEM required by the diagnostic criteria used in the study?

If yes, continue reading.

If no, stop, discard, and move onto next study.

 

how do we change the world,

so that instead of 1,000,000 trivial studies,
we get some meaningful, useful, accurate research ?


the sad thing is, many patients are keen to contribute, and add to the library-of-trivia.

 

If this was well done over a long period of time it could be quite interesting. Unfortunately this kind of approach would need some sort of objective markers of health or disease to avoid the pitfall of conflating fluctuations and placebo responses with genuine improvement in health.

Over a longer period of time this could clearly document how increased activity soon results in decreased activity, if steps per day are aggressively measured. It's not clear from the description if they are actually planning something like this.

 

It sounds a bit like a coursework module to me, whose aim is more for the benefit of students than it is patients. I don't agree that studies make an implicit assumption that symptoms don't change over time, either; it's been understood for a long time that in mild to moderate patients, it's often highly variable even from hour to hour. It's also been understood for decades that 'modifiable lifestyle factors' can affect fatigue, and that each individual has to learn to pace and identify symptom triggers. I don't see anything new?

 

They say:

Yet the project runs over 6 weeks which is no time at all.

The difference in results had I participated in something like this in a good phase, especially early on, compared with a bad phase would be vast.

We all know that even within phases, within days and even hours, there are fluctuations. Their time frame is far too short to be meaningful.

They also say:

Surely by measuring over such a short period if time they are making the same assumptions? You simply cannot capture a full picture of the nature of a fluctuating condition over such a short period of time.

On top of all the other issues.

Edited -spelling

 

so its a glorified version of what you do for a couple of weeks at the UK CFS/ME clinics noting stuff on a paper chart - I'm sure GETSET Julie would be brilliant at it

ETA is this really biomedical research?

 

This study is recruiting at the moment. It is still vague and all the previous comments appear to have been ignored. I've expressed an interest in doing it but won't as it looks like a waste of time and there doesn't appear to be any intent to ensure participants actually ahve ME/CFS.

 

What would be interesting is if you had samples from patients before becoming ill and during illness. Or, maybe more likely, in recovered patients, samples during illness and after recovery. It would be interesting to see what changes you could pick up on - either in an individual or as a pattern among many patients.

Maybe that would be a worthy prospective study. Maybe it would give a clear signal on subgroups if they exist. On the other hand, I would think we should be able to get the same information comparing sick people and healthy people, and ultimately we'd be limited by the same lack of knowing what to be looking for.


______

The thing at the start of this thread looks like somebody needs to produce a paper and has no qualms as to how dopey it is.

 

I've not read the blurb, but even some form of comparative group would seem to be useful - healthy controls or another chronic illness to flag up the nature and degree of any differences?
Apologies if this is being done

 

From the document posted it looks to me as if this is potentially quite sensible. The patients will carry attometers that will record patterns of activity continuously over 6 weeks. That is pretty much what I have been recommending as an objective way of documenting the illness. Six weeks may not be quite long enough but it is not bad. It may be that standard attometers do not give enough detail of the type of movement but it would be a start.

The patients are also asked to answer questions about symptoms. That would provide a correlation between the subjective side and the objective measure of movement. It may not be reliable or sensitive but it makes sense. At least the results may show where more detail is needed for a subsequent study.

I think people are being overcritical. This looks to me much better science than a lot of the lab based data trawling we hear about - because it studies the problem we are trying to explain. The problem with a lot of the lab stuff is that it seems divorced from any real idea of what it is supposed to explain.

 

Had I been recording my activity levels since October, it would have shown interesting patterns. Steady improvement with some fluctuations, with more and more regular activity, followed by a crash that has lasted several weeks so far where activity is reduced and more irregular.

Six weeks may be short to catch most crashes, potentially leading to the erroneous conclusion that most patients don't have crashes.

 

Yes, but if the patients reported no crashes it would be clear that the traces did not include crashes - so there would be no risk of that conclusion.

 

In reality I'm crashing much more often but they are just small crashes. A longer lasting crash is much more interesting however and more visible in the data.

 

I had the same impression. I can't access the webpage.

If there are actometers then I would agree that things look quite a bit more worthwhile.

As it stands though it looks like they're trying to find, for each individual patient, which subjective feelings/emotions are linked to good/bad symptoms, which seems unhelpful - although again this could become more interesting with objective activity data.

It is rather vague, so hopefully it does turn out to be a good one.

 

At the NIH conference Keller said that wrist-worn actometers didn't show a difference in activity levels between patients and controls after an exertion test. She believed this was because patients spend a lot of time in front of smartphones, television and computers and wrist-worn actometers will reflect that. There might not be much of a change in that behaviour even after exertion.