SEID/CFS is common in sleep centre patients with hypersomnolence: A retrospective pilot study, 2018, Trotti et al

Andy · Apr 7, 2018

Summary

Symptoms of the central disorders of hypersomnolence extend beyond excessive daytime sleepiness to include non‐restorative sleep, fatigue and cognitive dysfunction. They share much in common with myalgic encephalomyelitis/chronic fatigue syndrome, recently renamed systemic exertion intolerance disease, whose additional features include post‐exertional malaise and orthostatic intolerance. We sought to determine the frequency and correlates of systemic exertion intolerance disease in a hypersomnolent population.

One‐hundred and eighty‐seven hypersomnolent patients completed questionnaires regarding sleepiness and fatigue; questionnaires and clinical records were used to assess for systemic exertion intolerance disease. Sleep studies, hypocretin and cataplexy were additionally used to assign diagnoses of hypersomnolence disorders or sleep apnea. Included diagnoses were idiopathic hypersomnia (n = 63), narcolepsy type 2 (n = 25), persistent sleepiness after obstructive sleep apnea treatment (n = 25), short habitual sleep duration (n = 41), and sleepiness with normal sleep study (n = 33). Twenty‐one percent met systemic exertion intolerance disease criteria, and the frequency of systemic exertion intolerance disease was not different across sleep diagnoses (p = .37). Patients with systemic exertion intolerance disease were no different from those without this diagnosis by gender, age, Epworth Sleepiness Scale, depressive symptoms, or sleep study parameters.

The whole cohort reported substantial fatigue on questionnaires, but the systemic exertion intolerance disease group exhibited more profound fatigue and was less likely to respond to traditional wake‐promoting agents (88.6% versus 67.7%, p = .01). Systemic exertion intolerance disease appears to be a common co‐morbidity in patients with hypersomnolence, which is not specific to hypersomnolence subtype but may portend a poorer prognosis for treatment response.
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Paywalled at https://onlinelibrary.wiley.com/doi/full/10.1111/jsr.12689

Trish · Apr 7, 2018

I don't quite know what to make of this. I guess it's evidence that the ME/SEID patients identified in this study may have any of the whole range of sleep disorders alongside, or as part of their ME - so it looks like there is not a particular type of sleep disorder specific to ME.

This bit seems interesting.

Patients with systemic exertion intolerance disease were no different from those without this diagnosis by gender, age, Epworth Sleepiness Scale, depressive symptoms, or sleep study parameters.
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And, not surprisingly, the prognosis when using sleep treatments is not as good as for otherwise healthy people.

I don't think we can conclude too much from this - it's a very small study as far as the ME group is concerned as only 39 patients fulfilled the ME/SEID criteria (21% of 187 patients). And there may be a selection pressure - maybe pwme are less likely than others to get access to sleep centre testing.

BruceInOz · Apr 9, 2018

From the abstract:

questionnaires and clinical records were used to assess for systemic exertion intolerance disease
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How accurate was the SEID diagnosis? I haven't chased behind the paywall but that statement does not fill me with confidence.

Webdog · Apr 9, 2018

I do think it is not uncommon for GPs to mistake orthostatic intolerance for daytime hypersomnia, particularly when patients describe having to frequently lie down and close their eyes during the daytime.

Sly Saint · May 16, 2018

Article on the above:
How much does idiopathic hypersomnia overlap with ME/CFS

In everyday linguistic usage among non-specialists, sleepiness can blend together with tiredness and fatigue. Someone might feel “tired” after climbing a mountain or chopping down a tree, while “sleepiness” is different. Emory sleep scientists explore the pathological distinctions in a paper published in Journal of Sleep Research.

A team led by neurologists Lynn Marie Trotti and David Rye has been studying idiopathic hypersomnia (IH) for several years: people who experience excessive daytime sleepiness and “sleep drunkenness,” not explained by other medical conditions.

IH’s symptoms don’t usually include persistent muscle pain or a severe response to exertion. This separates the disorder from myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). But there is some overlap, which is what neurology resident Caroline Maness, Trotti and colleagues report in the new paper. The authors use the official term SEID (systemic exertion intolerance disease), which was recommended by an Institute of Medicine panel in 2015, but hasn’t really stuck among those in the ME/CFS field.

Some people with IH have disclosed that they were previously diagnosed with ME/CFS. Outside of the sleepy vs tired issue, some people with IH report symptoms shared with ME/CFS, such as impaired circulation in their extremities in response to cold, or dizziness upon standing. Speculatively, this may point to a possible problem with the autonomic nervous system. Trotti and a collaborator at Stanford, Mitchell Miglis, are now examining this issue further.
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full article here:
http://www.emoryhealthsciblog.com/h...c-hypersomnia-overlap-with-me-cfs/#more-15001

strategist · May 16, 2018

Full text here https://sci-hub.hk/https://doi.org/10.1111/jsr.12689

I was skeptical about this claim and suspected that they had used a flawed definition of PEM. I therefore looked at the methodology. Here is what I found:

They retrospectively attempted to determine whether patients met IOM criteria or not. Here is how they determined whether a patient had PEM:

The FSS queries post-exertional malaise (criterion 6) in question item 2. Patients were considered positive for post-exertional malaise if they scored 5 or greater on this question
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I have taken the FSS myself and don't remember any question being about PEM. So I looked it up (https://www.sralab.org/sites/default/files/2017-06/sleep-Fatigue-Severity-Scale.pdf) and item 2 is "Exercise brings on my fatigue" which is not inconsistent with PEM but far too vague and likely to generate a large amount of false positives.

This is a sign that we need better tools for researchers and doctors wishing to determine whether patients have PEM or not.

alex3619 · May 16, 2018

strategist said: ↑

This is a sign that we need better tools for researchers and doctors wishing to determine whether patients have PEM or not.
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I have recently been discussing the issue with operationalization of PEM in studies, and the need for biomarkers. Asking questions is fine for clinical purposes, but not fine for research purposes. We don't just need ME biomarkers, we need PEM biomarkers, even if they are not diagnostic of ME. Confusing exercise intolerance with PEM is a big issue.

strategist · May 16, 2018

Here's the opening paragraph of the PEM section in the IOM report

PEM is an exacerbation of some or all of an individual’s ME/CFS symptoms that occurs after physical or cognitive exertion and leads to a reduction in functional ability (Carruthers et al., 2003). As described by patients and supported by research, PEM is more than fatigue following a stressor. Patients may describe it as a post-exertional “crash,” “exhaustion,” “flare-up,” “collapse,” “debility,” or “setback.”2 PEM exacerbates a patient’s baseline symptoms and, in addition to fatigue and functional impairment (Peterson et al., 1994), may result in [here begins a long list of symptoms]
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https://www.nap.edu/read/19012/chapter/6#78

The authors don't seem to have read this part, as it clearly says that "PEM is more than fatigue following a stressor".

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SEID/CFS is common in sleep centre patients with hypersomnolence: A retrospective pilot study, 2018, Trotti et al

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SEID/CFS is common in sleep centre patients with hypersomnolence: A retrospective pilot study, 2018, Trotti et al

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