Treatment of insomnia reduces fatigue in CFS in those able to comply with the intervention

[alex3619]

Yes, been there. Very comfortable for me, with the exception of not being able to interact with anyone in my time zone.

Thank goodness for the internet!

 

[greeneagledown]

The problem with studies like this is that they're treating one problem (insomnia) that happens to cause fatigue, and then concluding that the intervention is effective in treating ME/CFS, a separate and independent cause of fatigue. Of COURSE treating insomnia decreases fatigue. That would be true in any type of patient, whether the patient has ME/CFS or not. Did we really need a study to tell us that treating insomnia might decrease fatigue in people with insomnia?

This would be like taking a ME/CFS patient who also happens to be hypothyroid, giving the patient supplemental thyroid hormones, seeing that the patient's fatigue improves somewhat, and then saying, "Wow, thyroid hormones appear to be effective in treating ME/CFS!"

The only way to prove that sleep therapy treats ME/CFS would be to screen out people with independent sleep problems prior to the study.

 

[alex3619]

The only way to prove that sleep therapy treats ME/CFS would be to screen out people with independent sleep problems prior to the study.

One problem here is that people with ME and CFS typically have sleep problems. Indeed its often required, depending on the definition. There is however a difference between unrefreshing sleep, insomnia, delayed sleep phase and non-24 circadian issues, and I think another one worse than non-24 that I lapse into from time to time and might be associated with elevated blood pressure.

Patients have said for as far back as I can recall that if they could only get better sleep then things would be better.

I would love to see studies like this stratified into duration of illness. Something I noticed some years ago is that circadian sleep disruption starts showing up at about year three of illness, and is fairly pervasive at about year 10. I wonder if we should do a survey on this?

 

[barbc56]

Ditto. In fact if I follow my altered circadian pattern I rarely get insomnia. I get insomnia when I try to fight it.

Yup! Supposedly, if you change your sleep cycle to "normal", even with medication, you still don't get the same quality sleep as you would if you followed your body's sleep cycle. Some of us just aren't wired for these rhythms. Of course this isn't practical if you're working or have kids, etc.

If you did the same intervention for people without CFS but have sleep issues, you'd probably get the same results.The benefit of treatments like this, tend to fade with time and safe repotes are notorious for not being reliable nor valid. What a poor design. I'm surprised Julia Newton put her name to this.

I've tried working on my sleep hygiene so many times I should be squeaky clean!

 

[alex3619]

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I've tried working on my sleep hygiene so many times I should be squeaky clean!

I did do that for three years while getting my BSc. The result was I was so exhausted my OI was a big issue, and I collapsed (syncope) on so many stairwells I forget. I kept thinking about dropping subjects. Once it was three times in the same stairwell, one after the other. I tried light therapy in the early 90s (93 or so). Mild sedating drugs do nothing, heavy ones would be dangerous for me.

 

[ahmo]

I did all manner of things to deal w/ terrible insomnia. From herbals and Klonopin, to movement and sound modalities. Nothing impacted my terrible situation. Finally, when I had adequate levels of MB12, I became a sleeper. Go to bed, go to sleep, stay asleep. If awakened, generally easily return to sleep. First time in my life to have the luxury of going to bed and going to sleep. Now 2 years on, my sleep remains generally excellent.

 

[TrixieStix]

If you find that sleep hygiene helps you, perhaps your issue was with sleep and not CFS/ME at all.

I have intractable sleep problems (delayed sleep phase syndrome) along with my other symptoms. I would like to have a more typical sleep pattern, but I haven't been able to achieve it. I don't often have insomnia, however.

I too have been diagnosed with Delayed Sleep Phase Disorder/Syndrome. It started when I developed ME/CFS/SEID. I too have no problem staying asleep. It's simply just been a flipping of my wake/sleep cycle. sleep during the day. awake all night.

 

[TrixieStix]

​

I did do that for three years while getting my BSc. The result was I was so exhausted my OI was a big issue, and I collapsed (syncope) on so many stairwells I forget. I kept thinking about dropping subjects. Once it was three times in the same stairwell, one after the other. I tried light therapy in the early 90s (93 or so). Mild sedating drugs do nothing, heavy ones would be dangerous for me.

My sleep doctor didn't even suggest any therapies as they are ineffective with circadian rhythm disorders. And don't let a sleep doctor talk you into doing Chronotherapy as it has now been shown to push some people into an even worse sleep disorder called N24.

 

[alex3619]

N24

Too late. This is common in long term ME patients, and requires no drugs to induce.

 

[TrixieStix]

Too late. This is common in long term ME patients, and requires no drugs to induce.

Chronotherapy is not a drug. It is a therapy where you are told to go to bed progressively later and later until on a "normal" schedule. It has recently been shown to cause N24 and while some sleep doctors have gotten the memo many still have not and are still recommending Chronotherapy.

 

[alex3619]

Chronotherapy is not a drug. It is a therapy where you are told to go to bed progressively later and later until on a "normal" schedule. It has recently been shown to cause N24 and while some sleep doctors have gotten the memo many still have not and are still recommending Chronotherapy.

Hi, you are correct that the term chronotherapy has been used to include adjusting sleep timing to treat delayed sleep onset.

Typically chronotherapy refers to any therapy in which circadian timing is important. In sleep issues this also includes melatonin, light therapy, and some drugs. There are a number of melatonin drug alternatives that have been tried.

When adjusting sleep timing used with sleep therapy I see it referred to as phase-delay chronotherapy. In other words, a specific kind of chronotherapy.

The risk of phase delay chronotherapy inducing non-24 seems to be rare. There are some anecdotal cases. The actual incidence appears to be hard to find, though statistics are available. See here:

http://www.nejm.org/doi/full/10.1056/NEJM199212103272417

In 1983, one of us3 described a 28-year-old man with DSPS who underwent chronotherapy and found himself unable to stop his sleep period from rotating around the clock or restore his rhythm to a 24-hour schedule. Instead, hypernyctohemeral syndrome developed,4 with a persisting 25-hour sleep–wake cycle. This rare syndrome is extremely debilitating in that it is incompatible with most social and professional obligations. Since then, we have diagnosed hypernyctohemeral syndrome in two men 22 and 28 years old, in whom it developed after chronotherapy for DSPS.

However this is an old reference.

This site discusses some of the issues:

http://www.circadiansleepdisorders.org/info/N24chrono.php

Some persons with DSPS do go on to develop Non-24 in the course of their lives, but this is very rare. The vast majority of people with DSPS never progress to Non-24.

Chronotherapy is not the only factor that can cause someone with DSPS to develop Non-24. Anecdotal reports suggest that this can also happen in some persons who have not done chronotherapy. However this is rare. The vast majority of persons with DSPS will never develop Non-24.

Doing chronotherapy however, changes the equation and seems to put persons with DSPS at significant risk of developing Non-24, even people who otherwise would have remained in a stable DSPS indefinitely.

However none of this research seems to be about ME or CFS. Given the brain involvement in ME its possible we are at higher risk. Its also possible we are at risk even without phase-delay chronotherapy.

I have seen a high proportion of phase-delay and non-24 in long term ME patients. We have a host of sleep issues. These problems I see, anecdotally of course, start appearing at about year 3 and being very common after year 10 of illness.

This is an area that could use far more study in ME. If we are hypometabolic that might be all that is needed to put us at risk, particularly if we have fluctuating daily temperatures.

I now live with a free running circadian pattern. This has immensely improved symptomology, while at the same time inducing the typical social problems found with non-24.

However at times this breaks down and its like my circadian rhythm is six hours, not 24 or 25, though I have only seen this in the last few years, and typically it resolves in a few days or weeks.

PS Another ME patient I have discussed this with has the same issue as me that sleep onset can advance, hold, or reverse by a highly variable time. Its not an hour. Its anything from minutes to eight hours. Its just commonly more like an hour.

 

[IreneF]

Chronotherapy is not a drug. It is a therapy where you are told to go to bed progressively later and later until on a "normal" schedule. It has recently been shown to cause N24 and while some sleep doctors have gotten the memo many still have not and are still recommending Chronotherapy.

I've done this several times and it did not help. With a lot of effort I can get to bed at 2 AM. Right now I'm at 3:30-4:00 AM.

I have always been a night owl and not only do I like to stay up late, it takes me a few hours to really wake up in the morning. Afternoon, really.