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BMJ: Are there sleep-specific phenotypes in patients with chronic fatigue syndrome?

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jun 2, 2013.

  1. Firestormm

    Firestormm Guest

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    Are there sleep-specific phenotypes in patients with chronic fatigue syndrome? A cross-sectional polysomnography analysis

    1. Zoe M Gotts1,
    2. Vincent Deary1,
    3. Julia Newton2,
    4. Donna Van der Dussen3,
    5. Pierre De Roy3,
    6. Jason G Ellis1

    1. Correspondence to Dr Jason G Ellis; Jason.ellis@northumbria.ac.uk
    • Received 5 April 2013
    • Revised 24 April 2013
    • Accepted 25 April 2013
    • Published 1 June 2013
    Abstract

    Objectives
    Despite sleep disturbances being a central complaint in patients with chronic fatigue syndrome (CFS), evidence of objective sleep abnormalities from over 30 studies is inconsistent. The present study aimed to identify whether sleep-specific phenotypes exist in CFS and explore objective characteristics that could differentiate phenotypes, while also being relevant to routine clinical practice.

    Design
    A cross-sectional, single-site study.

    Setting
    A fatigue clinic in the Netherlands.

    Participants
    A consecutive series of 343 patients meeting the criteria for CFS, according to the Fukuda definition.

    Measures
    Patients underwent a single night of polysomnography (all-night recording of EEG, electromyography, electrooculography, ECG and respiration) that was hand-scored by a researcher blind to diagnosis and patient history.

    Results
    Of the 343 patients, 104 (30.3%) were identified with a Primary Sleep Disorder explaining their diagnosis.

    A hierarchical cluster analysis on the remaining 239 patients resulted in four sleep phenotypes being identified at saturation.

    Of the 239 patients, 89.1% met quantitative criteria for at least one objective sleep problem. A one-way analysis of variance confirmed distinct sleep profiles for each sleep phenotype.

    • Relatively longer sleep onset latencies, longer Rapid Eye Movement (REM) latencies and smaller percentages of both stage 2 and REM characterised the first phenotype.
    • The second phenotype was characterised by more frequent arousals per hour.
    • The third phenotype was characterised by a longer Total Sleep Time, shorter REM Latencies, and a higher percentage of REM and lower percentage of wake time.
    • The final phenotype had the shortest Total Sleep Time and the highest percentage of wake time and wake after sleep onset.

    Conclusions
    The results highlight the need to routinely screen for Primary Sleep Disorders in clinical practice and tailor sleep interventions, based on phenotype, to patients presenting with CFS. The results are discussed in terms of matching patients’ self-reported sleep to these phenotypes in clinical practice.

    Full text is available - open access.

  2. Firestormm

    Firestormm Guest

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    This is an interesting study. If 30% of patients can be better diagnosed, excluded and treated with something else - that is good news for them.

    Those that remain in the 'pot' would benefit I believe from having this focus on sleeping assessed. If these phenotypes are subsequently proven true; then hopefully we might see some specifically targeted treatments that do not exist at present beyond the 'sleep hygiene' advice.

    I am apparently being subjected to this form of testing in the next couple of weeks. I'm not holding my breath - it's been a long time coming - but these night-time/sleep disturbances/unrefreshing sleep are one of my major concerns and have been for a very long time.

    I've often thought 'If only I could get some decent sleep I'd be able to see how that impacts my quality of life'. Some nights are so bad they trigger fits. Anyway, be nice to get to the bottom of it but like I said I don't think you can afford to hold your breath - this is largely unknown/untreatable territory.

    Nice to see Newton involved again. Apparently the MEA Ramsay Research Fund are about to confirm funding for a similar study with this group I understand.
    Ecoclimber likes this.
  3. Esther12

    Esther12 Senior Member

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    Thanks Fire.

    I've never been checked for anything like this, and always had a nagging thought that maybe I should be. On the other hand, I generally feel that my sleep is pretty good. Anyone know how effective treatments are for those who do have these problems?
  4. NilaJones

    NilaJones Senior Member

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    I have sleep apnea and am unable to use a PAP machine due to injury. I do think the apnea is a factor in my illness, maybe a major one.

    I finally have an appointment with a sleep doc in July, though from what I read on the net there is not much hope for a treatment that can work for me. It would be way cool if there is, though!
  5. Esther12

    Esther12 Senior Member

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    I'm sorry to hear that Nila. Best of luck with the specialist. Hopefully they will have something helpful for you. Having an alternative to the CFS label is probably a bit helpful in itself.
    Firestormm likes this.
  6. SOC

    SOC Moderator and Senior Member

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    One of the first treatments I got was for sleep dysfunctions, which were substantial and lifelong. I felt better as soon as I was getting better sleep with OTC meds to induce sleep and prescription meds to maintain sleep. I can't say it did anything for my core me/cfs symptoms -- PENE, flu-like symptoms, cognitive problems, joint and muscle aches.

    For me, there is a difference between "tired", which I was when I wasn't getting good sleep, and "completely exhausted" which I am during an ME/CFS crash.

    That said, improving my sleep provided a noticeable QOL improvement, and probably helped other body systems function better, so I think it's well worth doing. :)
    WillowJ, Firestormm and lnester7 like this.
  7. Firestormm

    Firestormm Guest

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    I'd be interested to hear on this thread perhaps from anyone who has experienced these EEG tests overnight. I was told that I'd perhaps be asked to wear some device or other for 24 hours.

    When I was tested with EEG for epilepsy the trouble was that it can only confirm an episode. So no episode and nothing is picked up - unless your brain waves have been affected permanently, I understand.

    Maybe wearing these things for a longer period will pick-up more abnormalities and in a suitable study, in more of us. I do recall how hard it was trying to get any sleep medication from the variety of doctors I have seen in my time.

    Be really nice to have something to demonstrate a need other than simply describing the experiences myself or having others describe them for me.

    Be even better to receive some tailoured treatment for my issues.
  8. WillowJ

    WillowJ Senior Member

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    Thanks for posting, this is an interesting study. I agree it's good to exclude people whose only issue is apnea or whatever. But it's not inconceivable that people could have both apnea and ME. I'm pretty sure there is a paper out there making the recommendation that apena and other sleep disorders not be exclusionary because they are relatively common in us.

    not the paper I was looking for, but KDM found 46%+ of CFS patients have comorbid sleep disorders:
    http://www.ncbi.nlm.nih.gov/pubmed/11382899
    Krupp et al. (1993) found a high rate of comorbid sleep disorder:
    http://www.ncbi.nlm.nih.gov/pubmed/8510058

    Firestormm a 24-hour study, if it's for sleep, sounds like they might want to check for narcolepsy. There are some papers saying narcolepsy is common in CFS (not sure if they have been replicated by a second team, though Krupp found a patient with narcolepsy).
    http://www.ncbi.nlm.nih.gov/pubmed/20629967 (sodium oxybate, you may recall, was denied in FM and/or CFS, apparently because the population is too large)
    previous paper by Spitzer et al.: http://www.ncbi.nlm.nih.gov/pubmed/20230458

    I had an overnight sleep study and the wires were not too uncomfortable to have on, but annoying because I had to watch out for them a little bit through the night. They made them all into a bundle, though, so it was just one thing for me to keep track of (the attendant came and re-stuck a wire to my forehead or chin or back a couple times, though). Not unlike using a CPAP in the end, though (which similarly has a tube).

    I hope both you and NilaJones get some good help.
    SOC and Firestormm like this.
  9. redrachel76

    redrachel76 Senior Member

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    I went once to a sleep lab. With the late falling asleep and late waking a lot of us have (They force you to wake at 8a.m) I didn't get enough sleep for them to assess. So they just diagnosed me as "delayed circadium rythm" and told me to take melatonin and come back when my sleep timing was right. I told them melatonin doesn't work for me but that didn't go down well. Then I said to them "all the reasearch says that ME/Fibro/CFS have less deep sleep than ordinary people. Is there anything you can do if you find less deep sleep?"
    They answered no.
    So I didn't come back. My fibro gave me bloody agony in their bed all night too and I needed a few days to recover.

    I have a friend with ME with the same delayed circadium rythm. She got an invitation for a sleep study for her ME and she can NEVER make it because her sleep patterns never sort out correctly enough to go.

    That's what I don't understand about this study, with so many of us having delayed sleep onset and weird sleep timing, how did they manage to do it?

    I sometimes wonder if I should try again
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  10. alex3619

    alex3619 Senior Member

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    I laughed when I read the abstract, but I am reserving further judgement till later. First, apnoea does not necessarily exclude ME ... if your only symptoms are fatigue and poor sleep, then yes it might. Second, which sleep type am I? All of them. At different times I have had something resembling each of these stages of sleep issues. So am I all four categories? I don't think so. Different stages of ME and different secondary issues including diet are likely to have a profound effect. I don't trust these categories from the start, but to be fair I have to read the full paper.

    Its been about fifteen years or more since I had a sleep study. I am planning another one for later this year ... hopefully.
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  11. helen1

    helen1 Senior Member

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    I had an overnight sleep study done last year. It was agony with all the disruptive things that can keep a person wakeful, starting with fluorescent lights, then all the wires on your body, the nose clip, the noisy bed, the woman snoring loudly in the next room... It took me a few days to recover. They did find periodic limb movement disorder but I don't buy it. They also said I was asleep at midnight but I know I wasn't, I had just looked at the clock and was thinking of packing it in and going home. I'm in awe of anyone who can sleep well enough at a sleep lab for viable results.
    redrachel76, Simon and Firestormm like this.
  12. biophile

    biophile Places I'd rather be.

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    Are the CDC still denying that objective sleep abnormalities even exist in CFS, or claiming that any abnormalities in a subset do not correlate with subjective complaints? I report subjective sleep problems and I have matching objective evidence listed as phenotypes in the above study, thanks.
  13. Sea

    Sea Senior Member

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    I'm about to have a sleep test. It's a portable unit so they'll wire me up and then I get to go home and sleep in my own bed. I don't know yet what info it will collect but it won't cost me anything so it will be a good start even if it's not comprehensive.
    Little Bluestem likes this.
  14. Valentijn

    Valentijn Activity Level: 3

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    That's where I went, and they are a very crappy "fatigue" clinic. This is most certainly not an ME study.

    But I guess it explains why they diagnosed me with Fukuda even though they advertise using the CCC, and put me in for a sleep study even though I wasn't having sleep problems. It also explains why the physiotherapist had heard of Newton and took my OI problems somewhat seriously.

    Maybe it also explains why they eventually de-diagnosed me with "fatigue" on the basis of "obesity". From reading the Dutch forum on the subject, it sounded like other patients had been let go too ... either de-diagnosed like me, or being charged extra money for the same services despite already having a contract with the clinic.

    But something like 95% of the patients I saw in waiting rooms at their clinic were not ME/CFS. Lots of very healthy people with burnout, so I'd be curious to know where they'd even get Fukuda patients from.
    redrachel76 and alex3619 like this.
  15. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I have had two sleep tests. They sent me home at 5 am for the first one, which was fine since I hadn't slept at all and wasn't going to. They sent me home at 5, or possible 6, for the second. I had finally dozed off and had one fitful sleep cycle which the dr said was not sufficient to diagnose anything. If they had let me sleep for a few more hours, they might have had some useful data.
  16. Firestormm

    Firestormm Guest

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    Thanks. It was my impression that I would be doing this experiment at home as well. I should know more next Monday after a consultation with the Neurologist. It would make sense to do this kind of thing for longer at home - providing of course I can manage the darn device and it works. I don't see why a modern device cannot be developed/has not been developed to help with sleep study. There must surely be something on the market that the NHS can use. Not every county has a sleep disorder centre after all.
  17. Firestormm

    Firestormm Guest

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    Thanks. This was a concern I raised above - that it must surely take several days of observation to amass truly useful and objective data. Hopefully, any further study from Newton (and anyone else) will be along these lines and include a control group. Perhaps this is where the MEA are heading.

    When it comes to patient observation and testing, then it makes even more sense to do this over a period - say a week. I couldn't believe that with Epilepsy they didn't do this - that they simply popped this thing on my head for 10 minutes and thought that would be enough to spot something. Even my doctor said how arbitrary this was and how it only really ever picked up people who had been severely affected by Epilepsy. I may well read-up on the latest methods for doing such tests. It was 10 years ago that I received this diagnosis of Epilepsy and things might have changed. Will know more by next week I hope.
  18. alex3619

    alex3619 Senior Member

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    With epilepsy there are huge problems. Typical EEGs read only surface brain activity. If the problem is deep in the brain, it requires (I think, I could be mis-remembering) a QEEG (quantitative EEG). This is more expensive and harder to get. EEGs are simply not sensitive enough to read all epileptic problems, but then its thought QEEG isn't either. There is a suspicion that many with deep brain epilepsy wind up diagnosed with a psychogenic illness.
  19. Firestormm

    Firestormm Guest

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    The problem still persists - I understand - that unless you can record an actually 'fitting' event any diagnosis is not entirely certain. However, when 'fits' or episodes are observed by others - most especially clinicians - I don't think they can be much doubt.

    This happened to me. Trouble is - my own doubt persists. The testing that occurred did not leave me very impressed. The medications however have lessened the occurrence of these episodes. They're now wanting to focus-in on my sleep patterns to try and better understand the episodes that occur when in sleep-mode, as well as the paralysis, and general sleep disruption. So much of this needs to be observed.

    I almost said 'observed to be believed'. I guess it's what we all feel sometimes: 'If only they could see (and ideally feel) what is happening to me!' As I said I'm not hoping for much this time.

    The study above though is I think a way to go. Needs to be bigger, longer, controlled, and better financed. Also be interested to compare the results with other conditions. I think if it can be demonstrated, as individuals, we have other things wrong with us that have not been correctly diagnosed - the 'dustbin diagnosis' label might diminish.

    And it's better for us as individuals - providing of course these other diagnoses lead to specific and effective treatment for those symptoms/conditions of course. I am ready to be proved wrong - but I don't have a lot of faith in modern medicine. Not for 14 years I am afraid.
  20. Esther12

    Esther12 Senior Member

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    ? I've got no idea' what 'burnout' is really, but to me it seems like a lot of people with this diagnosis can be quite seriously ill, and not be able to recover. If 'burnout' is a meaningful thing, it wouldn't surprise me if a lot of people with CFS have it (if it results from pushing oneself over a long period of time, given the 'reassurance' and advice given to patients once they had fallen ill, it would not be surprising if most did).

    Also, given the initial paragraph of the paper, it does sound like the study was done by quacks. "Lots of patients diagnosed with CFS really have a primary sleep disorder... but there's no moral problem with having lumped them in to one big group and made claims about their behaviour and personalities based upon very tenuous evidence... we used to do it to the gays too, and no-one got fired for that." This time they've chosen to go for the claim that CFS is related to prior over-activity, rather than under. Given how conflicted and rubbish the evidence is in this area, I wonder if they just flick a coin.
    Little Bluestem and MeSci like this.

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