Actimetry Studies

[Trish]

I agree it's complicated, @Invisible Woman, and any data on actimetry would need to be accompanied by some sort of record of other aspects of the patient's symptoms including brain fog, infections etc.

Actimetry can only every be part of the picture, but I think would be an important advance on questionnaires or one off tests of strength or stamina like the step test or 6 minute walk where there was no record of the after effects of doing it.

 

[Sean]

Nobody is saying that actimetry is the gold standard, or the only measure to use, just that it gives an important part of the picture. The key point about it is that the data it does collect is objective. How to interpret that data is a different question.

 

[FMMM1]

I think if actimetry is used it has to be for the entire period of the study and a year or so afterwards. We need a full picture including frequency of PEM, whether an activity level is sustained for months on end, or just pushed to try to show you're doing more for the test week etc. And if it's an activity based treatment, to assess whether the person is actually increasing their overall activity, or just 'doing the x minutes walk' as prescribed, then resting all day to recover and cutting out other activities to be able to do it.

Yes I think this is key i.e. the length of time actimetry is conducted before an intervention (baseline) and post intervention i.e. to test whether there has been an improvement.

@Invisible Woman

I see what you're saying @FMMM1 but the problem is I don't think actimetry can paint the full picture.

I think this illustrates an obvious use of actimetry [from a review of PACE*]: "There was no significant improvement on any of the trial’s objective measures, such as numbers returned to work or levels of fitness."
I.e. these are things which can be objectively measured using actimetry - objective outcome measures.
I think actimetry could also be used to select participants i.e. for studies.

OK there may be some aspects which are more difficult e.g. identifying people who "crash" after exercise. Also, identifying significant cognitive change is difficult; however, I think there are establish techniques to objectively measure cognitive function (i.e. using electronic programs/tests) and these might provide an effective pre/post intervention objective assessment.

So actimetry has limitations but it may be the answer to some of the scams being perpetuated - like PACE.

*https://journals.sagepub.com/doi/10.1177/1359105317703785

 

[Invisible Woman]

I'm probably not being terribly clear. I don't.think actimetry is a bad thing but I think if it's not used properly it can be a dangerous thing.

I'm coming from a background where everything is measured & monitored. Vast sums are spend on extra bolt on kit to collect data, send alerts and so forth.

People like data. They like to play with it, put in into graphs and charts and it often gives the feeling of doing something, even when you're actually not.

This is a very real trap - I have seen business invest huge sums of money into such equipment, had it set up by experts and then be called in later because there's an issue. The issue is often that either the equipment isn't actually measuring what they thought it was measuring and so the figures being fed into the business for forecasting, stick and so on can be misleading.

The best way to avoid the trap, in my view, is decide what you want to look at, what the most important things to know are and then see what tools are available.

Otherwise you can end up measuring stuff for the sake of it.

 

[Invisible Woman]

I agree it's complicated, @Invisible Woman, and any data on actimetry would need to be accompanied by some sort of record of other aspects of the patient's symptoms including brain fog, infections etc.

Almost by definition this will.exclude a great number of patients at the more severe range who have cognitive difficulties already and/or have no one to help them.

One of the other issues I have with symptom.collection is that so many people have lived with symptoms for so long they forget they aren't normal and some may not be recorded.

 

[Trish]

You make valid and important points, @Invisible Woman. I think this discussion illustrates clearly why we need a range of patient voices involved in the planning of clinical trials and other research on ME/CFS. Clearly we want the full range of severity levels to be able to participate as much as possible. I think the team working on DecodeME are showing the way on this in the UK. I hope other research projects will follow their lead.

But I also think we need to be realistic about who can participate in different sorts of research. For example, I would not be able to be part of any study that involves having to travel to a study centre. And I would be ineligible for any clinical trial because of my age. Others may not be eligible for some studies if they have co-morbid conditions or are on medications that would confuse particular sorts of data. And we have to be realistic that someone with very severe ME/CFS may not be able to participate in a study involving lots of questionnaires, or daily record keeping, or any physical activity such as CPET, depending on which of their symptoms might make this unfeasible.

 

[FMMM1]

Came across this study i.e. via Health Rising:

Frontier studies on fatigue, autonomic nerve dysfunction, and sleep-rhythm disorder
https://link.springer.com/article/10.1007/s12576-015-0399-y

Role of sleep and circadian rhythm in fatigue recovery (Fig. 2)
Sleep features in individuals with CFS or chronic fatigue state
CFS is a medically unexplained disabling illness characterized by persistent relapsing fatigue of at least 6 months’ duration with low activity levels. Post-exertion malaise, neurocognitive dysfunction, infection-related symptoms, autonomic dysfunctions, and sleep disturbances are also major features of CFS.

Six studies reported no CFS specific findings in polysomnography (PSG) or actigraphy in contrast with CFS patients’ significant sleep complaints [41–46]. Fatigue or pain was well correlated with sleep disturbances and daily activity in patients with CFS or a CFS-related disorder, such as fibromyalgia [43, 47–49]. Interestingly, there was a weak correlation between fatigue score and sleepiness score in individuals without fatigue-related disorders [50].

Under ambulatory monitoring conditions using home-based PSG or actigraphy, patients with CFS showed significant longer bedtime sleep, longer awake time after sleep onset, and less efficient sleep [51–55]. Individuals with CFS had a high incidence of undiagnosed primary sleep disorders [56, 57]. This result strikes a note of warning for physicians.

Eight studies reported objective abnormalities in patients with CFS in terms of respiratory index, electroencephalographic power spectrum, and sleep-awake switching dynamics [58–65]. Gotts et al. showed that patients with CFS were divided into four clusters by sleep features based on hierarchical cluster analysis [66]. Those dynamics-based and cluster analysis results may reveal the heterogeneity of CFS pathophysiology and a new viewpoint regarding an analytical approach. It was also noted that total Pittsburgh sleep quality index score might not be suitable for patients with CFS [67, 68]. There were no significant actigraphic or polysomnographic differences between patients with CFS and a control group [49, 65, 68].

Fig. 2

Chronic fatigue state induced by sleep deprivation. Accumulation of sleep deprivation caused brain dysfunction with/without biological dysfunctions. Fundamental biofunctions (biological clock, energy metabolism, autonomic activity, and immune system), sleep disorders, and brain functions interacted with each other and created negative chains. Chronic fatigue state was observed as the output of brain dysfunctions

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