Sleep-Wake Behavior in Chronic Fatigue Syndrome (found to be normal)

[Snow Leopard]

Sleep-Wake Behavior in Chronic Fatigue Syndrome

Rahman K; Burton A; Galbraith S; Lloyd A; Vollmer-Conna U. SLEEP 2011;34(5):671-678.

Participants:

15 patients with CFS and 15 healthy subjects of similar age, sex, body mass index (BMI), and activity levels.
Interventions:

N/A
Measurements:

Self-report questionnaires were used to obtain medical history and demographic information and to assess health behaviors, somatic and psychological symptoms, and sleep quality. An actiwatch accelerometer recorded activity and sleep patterns over 5 days with concurrent activity and symptom logs. Diurnal salivary cortisol secretion was measured. Additionally, overnight heart rate monitoring and pain sensitivity assessment was undertaken.
Results:

Ratings of symptoms, disability, sleep disturbance, and pain sensitivity were greater in patients with CFS. No between-group differences were found in the pattern or amount of sleep, activity, or cortisol secretion. Afternoon activity levels significantly increased evening fatigue in patients but not control subjects. Low nocturnal heart rate variability was identified as a biological correlate of unrefreshing sleep.
Conclusions:

We found no evidence of circadian rhythm disturbance in CFS. However, the role of autonomic activity in the experience of unrefreshing sleep warrants further assessment. The activity symptom-relationship modelled here is of clinical significance in the approach to activity and symptom management in the treatment of CFS.

http://www.journalsleep.org/ViewAbstract.aspx?pid=28135

I believe these were basically baseline results for patients enrolled in an Australian CBT/GET programme.
It is interesting to note that they found no differences in sleep hygiene, nor activity patterns between patients and exercise level matched controls (eg sedentary controls). Polysomnography was not used however.

There were no statistically significant differences in diurnal salivary cortisol levels, nor scores on the Perceived Stress Questionnaire. (I have previously argued that differences in salivary cortisol response reflected lower stress/activity levels in patients compared to controls)

Apparently both afternoon and previous day activity predicted evening fatigue levels.

The only novel finding was that patients had significantly lower heart rate variation while sleeping. While sleeping, the sympathetic aspect of the ANS takes over, so any potential dysfunctions there could cause this result.
However the potential reason provided for the reduced HRV in the paper was highly speculative. One of the cited studies mentions that reduced HRV is even associated with immune system dysfunction, but that was not mentioned in this study.

 

[oceanblue]

Thanks for this. These findings would be interesting if they were repeated on a more plausible scale; I don't know why anyone bothers publishing n=15 studies. It would be great if these were pilots for larger studies, but the larger studies almost never emerge.

 

[Snow Leopard]

I think they publish merely because they can, and hopefully to inspire other researchers (sometimes a long shot as you suggest).
They also published another study with the same HRV findings about a year ago. But in that study they only had 20 patients, 20 controls.

 

[oceanblue]

They also published another study with the same HRV findings about a year ago. But in that study they only had 20 patients, 20 controls.

Exactly, and as the HRV theory is pretty 'novel' they need some pretty robust research to confirm it - not waste time with tiddlers like this. I'd be much happier if we saw far, far fewer studies but they were of sufficient scale and standard to mean something.

 

[alex3619]

Two of the most disturbing trends I have seen in ME/CFS research stem from a failure to ask patients about things before designing a study, and failing to study the very sick patients in favour of accessible patients with at most moderate symptoms. In my experience, from asking this of many patients, is that the major circadian disturbances in sleep cycles generally appear after ten to fifteen years, although they can appear earlier. The patients with these symptoms are moderate to severe, not mild to moderate in their ME/CFS symptoms. Only a large study, with long term well defined patients who are very ill have any real scientific credibility. This is at best a pilot study in scope and applicability - and I am being generous when I say that.

Bye
Alex

 

[Esther12]

I always see things on sleep disturbance in CFS, but normally without appropriate controls.

eg: I expect those with MS who are unable to work would have unusual sleep patterns too... in the same way that many CFS patients do?

Before I got ill I was naturally nocturnal, but spent most of the year with a 'normal' sleep pattern to fit in with others, while on holiday would completely reverse. Now I'm somewhere in between, as don't need to get up for others, but also don't have the energy for fun partying at night. Isn't it quite normal for people on unemployment benefit to go nocturnal? Also... isn't POTS likely to lead to people staying up later?

(Sorry - rambling reply.)

 

[August59]

This was one of my first major "long term" symptoms. Most symptoms were waxing and waning, but the "sleep-wake" cycle once disturbed was a constant and still is.

 

[Hope123]

I always see things on sleep disturbance in CFS, but normally without appropriate controls.

eg: I expect those with MS who are unable to work would have unusual sleep patterns too... in the same way that many CFS patients do?

Before I got ill I was naturally nocturnal, but spent most of the year with a 'normal' sleep pattern to fit in with others, while on holiday would completely reverse. Now I'm somewhere in between, as don't need to get up for others, but also don't have the energy for fun partying at night. Isn't it quite normal for people on unemployment benefit to go nocturnal? Also... isn't POTS likely to lead to people staying up later?

(Sorry - rambling reply.)

I realize this is just a casual post but the observations you make are merely speculations and somewhat odd ones at that. Why presume that just because people can't work that their habits change? Certainly those inclined to a nocturnal pattern might have more flexibility to spend more time up at night and sleep in later but there are those who are morning people too and they might choose instead to sleep earlier and get up earlier.

With ME/CFS, there might not be choice and it's not connected to unemployment but to the illness itself. For example, I tended to sleep later at night pre-CFS but I also needed only to sleep 7 hours a night and would get up early before work to go running/ exercise. Now I don't have that choice.

There is likely an immune dysfunction component to ME/CFS and if there is, it might account for why people feel worse on awakening -- this is seen in rheumatoid arthritis and it is known that certain cytokines like IL-6 spike in the morning. Furthermore IL-10 noturnal patterns are disrupted at night in FM and CFS and this might account for why people have probs with sleep. I tend to agree with Alex's post that something is amiss in this study based on the abstract. I would also say that many people I have talked to have probs with circadian rhythm early on -- mine came on within months.

Also, why do you think POTS would lead to people staying up later? POTS has to do with HR and BP and positional changes but how is it related to sleep or circadian rhythms?

 

[mellster]

I agree that it is likely a dysfunction - not a deficiency - which can swing both ways (over and under-active). Although insomnia and related symptoms are reported and might well co-exist, it might very well also be that there is an increased perception in contrast to pre-CFS days where one could just sleep 5 hours for a couple of nights and throw off one's rhythm with no notable side effects except for limited tiredness and therefore not seem to be bothered or hit with "insomnia". This is a good observation as I now remember having nights where I was not able to go back to sleep after5-6 hours or less but simply did not care as it would not have any big effect, hence no perceived insomnia.

 

[Snow Leopard]

I think the main point of the paper is that circadian disturbance is not the cause of CFS symptoms.

 

[alex3619]

http://en.wikipedia.org/wiki/Non-24-hour_sleep-wake_syndrome

Wikipedia quote: "People with Non-24 who force themselves to live on a normal 9-5 day "are not often successful and may develop physical and psychological complaints during waking hours, i.e. sleepiness, fatigue, headache, decreased appetite, or depressed mood. Patients with [Circadian Rhythm Sleep Disorders] often have difficulty maintaining ordinary social lives, and some of them lose their jobs or fail to attend school."

http://en.wikipedia.org/wiki/Circadian_rhythm_sleep_disorder

Prior to a diagnosis of CFS (Holmes definition, in 1989) I had insomnia. I had already been moderately ill for about 4 years. In the ensuing six years I began to have more circadian issues. In the late 90s this turned into non-24-hour sleep-wake syndrome (my diagnosis, not official). In the last couple of years I have had several episodes of up to a week where I could only sleep for 2-3 hours, several times a day. i had no sleep cycle.

Most of the sleep research focuses on circadian entrainment via light. Yet when I researched sleep a decade ago, before a host of modern discoveries, there were something like 15 factors that affect it, nearly all of which are believe deranged in ME/CFS. This is a profound biochemical loss of body clock entrainment in my view, but it takes time to develop.

Bye
Alex

 

[caledonia]

A major disruptor of the sleep cycle is having stage 3 adrenal fatigue. Cortisol levels are higher at night causing you to be awake at night and then catch up on sleep during the day.

I started having problems waking up at night one year prior to getting sick/disabled. During the first year after getting sick my circadian cycle started moving forward and it's been doing so ever since for 10 years. I just found out about how adrenal fatigue affects sleep this year. So this is probably not a well known thing. Just passing it on...

There are also disruptions in neurotransmitters such as melatonin and serotonin. But, even if I practice good sleep hygiene, get morning sunlight, take serotonin and melatonin, the reversed cortisol levels are enough to override everything else and screw things up.

 

[glenp]

I agree

Two of the most disturbing trends I have seen in ME/CFS research stem from a failure to ask patients about things before designing a study, and failing to study the very sick patients in favour of accessible patients with at most moderate symptoms. In my experience, from asking this of many patients, is that the major circadian disturbances in sleep cycles generally appear after ten to fifteen years, although they can appear earlier. The patients with these symptoms are moderate to severe, not mild to moderate in their ME/CFS symptoms. Only a large study, with long term well defined patients who are very ill have any real scientific credibility. This is at best a pilot study in scope and applicability - and I am being generous when I say that.

Bye

Alex

The sickest ones are not able to be here or be in any studies.

My sleep pattern abruptly changed from one extreme to the other.

 

[Snow Leopard]

In my experience, from asking this of many patients, is that the major circadian disturbances in sleep cycles generally appear after ten to fifteen years, although they can appear earlier.

I would also suspect something like sleep apnea in patients who only develop sleep disturbances after 10-15 years..

 

[Esther12]

I realize this is just a casual post but the observations you make are merely speculations and somewhat odd ones at that. Why presume that just because people can't work that their habits change? Certainly those inclined to a nocturnal pattern might have more flexibility to spend more time up at night and sleep in later but there are those who are morning people too and they might choose instead to sleep earlier and get up earlier.

With ME/CFS, there might not be choice and it's not connected to unemployment but to the illness itself. For example, I tended to sleep later at night pre-CFS but I also needed only to sleep 7 hours a night and would get up early before work to go running/ exercise. Now I don't have that choice.

There is likely an immune dysfunction component to ME/CFS and if there is, it might account for why people feel worse on awakening -- this is seen in rheumatoid arthritis and it is known that certain cytokines like IL-6 spike in the morning. Furthermore IL-10 noturnal patterns are disrupted at night in FM and CFS and this might account for why people have probs with sleep. I tend to agree with Alex's post that something is amiss in this study based on the abstract. I would also say that many people I have talked to have probs with circadian rhythm early on -- mine came on within months.

Also, why do you think POTS would lead to people staying up later? POTS has to do with HR and BP and positional changes but how is it related to sleep or circadian rhythms?

It was a slightly rambling, casual post. I need to stop doing that.

It could be that unemployed CFS patients alter there sleep habits for different reasons than unemployed MS patients... but I still think this would be a more useful comparrison than with healthy controls (although this doesn't relate to the above papers).

re POTS: The person I was seeing about this said that it's normal for people to feel worse in the morning (after having been lying down at night), then improve during the day, and that this often leads to people becoming more nocturnal. I don't know if this is true, but it sounded plausible.

 

[August59]

I think the main point of the paper is that circadian disturbance is not the cause of CFS symptoms.

Even though I had a sleep study prior to getting sick with "ME/CFS" that showed I was getting "zero" Stage 3 & 4 sleep. I was still on a very typical and routine pattern. So, I don't think this is by no means a "cause" of this disease, instead it is a "product" of this disease as my pattern has shifted. I still go to bed at the same time as always, but thehours that I actually sleep vary from week to week. Just to add some info - My last sleep study came back with "narcolepsy" as a diagnosis!!