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Sleep apnea should not be exclusion criteria for ME/CFS

Discussion in 'Latest ME/CFS Research' started by Hope123, Dec 26, 2010.

  1. Hope123

    Hope123 Senior Member

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    This is an older article but I want to find it due to its statement that sleep apnea should not be exclusion criteria for ME/CFS. Please send me full-text via PM or post in the library. It goes back to how the CDC consistently excludes people with sleep apnea from a diagnosis of CFS although people with CFS treated for sleep apnea don't have CFS symptom resolution.

    Thanks!

    *****************************************************************



    J Health Psychol. 2009 Nov;14(8):1251-67.

    Sleep apnea and psychological functioning in chronic fatigue syndrome.
    Libman E, Creti L, Baltzan M, Rizzo D, Fichten CS, Bailes S.

    Department of Psychiatry, SMBD-Jewish General Hospital, Concordia University, Montreal, Quebec, Canada. eva.libman@mcgill.ca

    Abstract
    Objectives were to explore: (1) whether sleep apnea/hypopnea syndrome (SAHS) should be considered a chronic fatigue syndrome (CFS) comorbidity, rather than a diagnostic exclusion criterion; and (2) to compare sleep/wake/ psychopathology in individuals with CFS, controls and another illness. Participants (CFS, SAHS, controls) completed questionnaires and were evaluated for SAHS; 68 percent were subsequently diagnosed with SAHS. CFS participants with and without SAHS did not differ. Both clinical groups were less well adjusted than controls. We conclude that SAHS should not be an exclusion criterion for CFS and that psychological problems in CFS seem a consequence of coping with illness.

    PMID: 19858344 [PubMed - indexed for MEDLINE]
  2. alex3619

    alex3619 Senior Member

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    Hi Hope123. ummm, this might sound funny but I think the problem is how exclusion criteria are used. Fukuda himself said that exclusion only applies if the diagnosis explains all the symptoms. There was also another study I vaguely recall reading that showed the prevalence of sleep apnoea in CFS at way over 50%! Yet another study showed that only half of the CFS patients being treated for obstructive sleep apnoea responded to treatment. So does this mean the other half have something that only looks like sleep apnoea? Bye, Alex
  3. Dolphin

    Dolphin Senior Member

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    I would see it like being very obese (for want of a better example): being very obese might cause symptoms. Or it might be the case that it makes little or no difference and all the symptoms are being blamed on the obesity when they shouldn't be. Just because someone who fit the symptoms criteria for ME/CFS has something that might be the cause of the symptoms, it doesn't mean that it is.
  4. Snow Leopard

    Snow Leopard Senior Member

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    In practise, only way for it to be proven as exclusionary is by treating the condition and seeing if the rest of the symptoms resolve. This is why depression is not really an exclusionary criteria. But in research, you have to try and exclude all possible confounding variables.
    So this is an example of the differences between research vs clinical definitions.
  5. Dolphin

    Dolphin Senior Member

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    But one has to be on the look-out: some people e.g. UK psychs, tend to like to exclude people with abnormalities. So one can get to the stage that people may think: if somebody has an abnormality, they don't have CFS and so by definition CFS doesn't have abnormalities associated with it.

    The CDC have sometimes been quick to exclude people with abnormalities e.g. abnormal Romberg sign.

    This is what they said in the Switzer et al paper on XMRV during the summer:
    The UK psychs can be very "slippery" on things like this (I would guess this might have been picked up from Peter White who Reeves said he spoke with regularly on the phone).
  6. Snow Leopard

    Snow Leopard Senior Member

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    The 'exclusionary for CFS' part is worrying. I agree there is not much point doing research where you exclude the patients most likely to hold clues to the pathology.

    The rest is reasonable - given the 'revised' definitions which include 1%+ of the population, there most definitely will be subsets, both neurological and psychological.
  7. Dolphin

    Dolphin Senior Member

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    I agree there are subsets.

    There is a battle on with regard to the Canadian Clinical Definition. Peter White would like it stopped. A few symptoms have been picked out, said to be neurological symptoms and said to make the whole definition unsuitable. This happened with the Scottish guidelines recently.

    If anyone has time, they can see the Peter White logic in action in this 29-minute talk http://rsm.mediaondemand.net/playersp1.aspx?EventID=1291
    "What is Chronic Fatigue Syndrome and What is ME?" from April 2008.
  8. Hope123

    Hope123 Senior Member

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    Alex3619, if you can PM me and/or put in the library the articles about the prevlence of sleep apnea in CFS and the treatment response I would appreciate it. The full-text of the Libman article here does talk about non-resolution of CFS symptoms despite sleep apnea treatment but more articles would be interesting.

    The difficulty here is that sleep apnea treatment is not as straightforward as it seems either. CPAP helps a lot of people who are able to comply with it but CPAP often requires patience/ multiple fittings/ adjustments between the patient and respiratory tech/ pulmonologist. My concern here is that people with ME/CFS with sleep apnea who do not or only partially respond to CPAP will be categorized incorrectly as "non-compliant" with CPAP and thus carry on the label of sleep apnea rather than being correctly diagnosed as ME/CFS. Regarding ME/CFS therapies, we have seen how people who don't do well with GET/CBT are sometimes labelled as "non-compliant" or not correctly compliant with GET/CBT rather than looking into why it doesn't work.

    The way that the CDC has used this exclusion criteria is that is people who are DIAGNOSED with sleep apnea are excluded from an ME/CFS diagnosis. It is not, as I understand, based on how they did or did not respond to treatment of sleep apnea.

    Also, many people with ME/CFS are diagnosed by non-research non-ME/CFS-specialty physicians and find their way to ME/CFS physicians after diagnosis. Most practicing clinicians might not get into the nitty-gritty of diagnosis and if they see sleep apnea as exclusion criteria they might exclude people with it from an ME/CFS diagnosis.

    On another definition note, when people talk about sleep apnea, they primarily focus on obstructive sleep apnea and not central sleep apnea. Sleep apnea is ME/CFS is interesting because there are a number of folks who are not obese/ have a thick neck/ unusual tonsillar anatomy consistent with obstructive sleep apnea; makes me wonder if they have central sleep apnea (which isn't help as much by CPAP). Then again, the sleep disorder in ME/CFS might be something entirely different and sleep apnea is the closest defined illness there is to label it as.
  9. floydguy

    floydguy Senior Member

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    I am certainly interested in this topic. I have been diagnosed with severe sleep apnea. However, I am slim, don't have a thick neck, don't snore, don't wake gasping for breath, etc and a CT Scan didn't show any airway issues. The sleep study also showed high oxygen levels. I used a CPAP for one year and didn't get any benefit from it. I think CPAPs are machines from hell - they suck! Now that I am seeing Dr. Klimas she wants to ensure that my sleep is good so I am starting with this all over again. It will be interesting to see how far we get. At this point I am convinced that it's an atypical apnea issue or something else entirely. For me it's not so much tiredness but something a lot closer to a hangover when I wake up the next day.
  10. lancelot

    lancelot Senior Member

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    "Unfreshing sleep" are words that do not describe how awful PWC feel when we wake up everyday. All my symtoms are magnified when i wake up and last for 4-6 hours afterwards. It's like waking up to a bad flu you didn't know you had the night before.
  11. OurDayWillCome

    OurDayWillCome

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    I have obstructive sleep apnea, well treated. I also have mitral valve prolapse, another condition mentioned. I am also positive by serology. I think it will take awhile to sort everything. If other existing conditions are treated, how could they be used to exclude someone? Testing will help sort this out.
  12. floydguy

    floydguy Senior Member

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    Exactly. It seems like every critical term in our illness is not accurate from unrefreshing sleep, to fatigue, to body pain, to brain fog, etc, etc.
  13. Sean

    Sean Senior Member

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    If you exclude organic signs and symptoms it is, of course, inevitable that you will end up with patients who have non-organic disorders, thus becoming a self-fulfilling prediction. It is a basic error in epidemiological reasoning, but a very convenient one for the psych school.

    This persistent exclusionary circular reasoning from the psych school about organic signs and symptoms is an extremely serious problem, and I am not impressed with the peer review process for failing to properly call them out on it.
  14. biophile

    biophile Places I'd rather be.

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    White the fisherman?

    I see in the video that White is still misrepresenting the Canadian Clinical Definition with the claim that "higher symptom count paradoxically means higher psychiatric comorbidity", citing a study by Kato et al involving chronic fatigue and number of other symptoms. Some organic diseases have high rates of psychiatric comorbidity as well, but I guess he sees the association as "paradoxical" because more symptoms accompanying the fatigue doesn't necessarily mean more physically representative of CFS. Of course, he doesn't bother to mention that Jason et al have shown (albeit in a smaller study) that when comparing actual Canadian criteria to the CDC criteria, the Canadian criteria selects a patient group with less psychiatric comorbidity despite requiring more symptoms.

    He also talks about why the CDC-1994 criteria lacks specificity and the value of broad heterogeneous criteria, and I received the impression that he thinks the PACE trial will demonstrate the value of broad heterogeneous criteria in CFS research as opposed to strict narrow criteria such as the Canadian criteria (presumably because casting a wide enough net will catch the type of fish you want, a broad heterogeneous criteria will inevitably find some patients who will benefit from CBT/GET in the trial).

    At the end he mentions the influence a diagnostic label can have on recovery, that those labelled with "ME an incurable organic disease" group have a worse prognosis than the CFS labelled group. But this isn't really surprising or convincing when using a broad heterogenous criteria which overlaps heavily with psychiatric diagnoses.
  15. Nielk

    Nielk

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    When I first became ill with ME/CFS, I did not suffer with sleep apnea.
    Two years into my illness I started snoring a lot (my husband told me) so I went for a sleep study where
    they diagnosed me with sleep apnea and gave me a cpap machine.
    On return of second sleep study with cpap machine, it showed that with using the machine, my sleep apnea disappeared.

    Throughout all this, there was no effect on my illness of ME/CFS.
    Therefore, I conclude from the study of myself that sleep apnea has nothing to do and has no effect on ME/CFS.
    .
  16. floydguy

    floydguy Senior Member

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    That's what I concluded too. I wish we could get someone else to acknowledge this. I am going through this with Klimas right now. So far she hasn't listened to my pleas that the CPAP didn't do any good.

    Do you still use the CPAP?
  17. Dolphin

    Dolphin Senior Member

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    Yes, he is very selective. He quotes a study involving Wessely and has a graph where the more of the 9 CDC criteria (fatigue plus the usual 8), the higher the score on some psychiatric scale. Two things to note on this: the graph starts at 0, 1, 2, etc - if it was just a sample of people who satisfy the CDC criteria it would start at 5.

    Also, the psychiatric scale used makes it a bit meaningless. I can't remember all the details but some physical symptoms are counted as psychiatric symptoms e.g. fatigue, sleep disturbance, cognitive problems, etc. So it's not surprising that there is a correlation between the number of CDC symptoms and the average score on this psychiatric scale.

    It shows how these psychiatrists have to be watched like hawks.

    Good point. He also has a cheek making points like the CDC-1994 lacks specificity when the Oxford criteria, the criteria he chose for the PACE Trial etc, is even worse in that area. So he's nit-picking while the alternative he has is even worse.
  18. Nielk

    Nielk

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    I don't use it anymore because it was uncomfortable and I used to throw it off during sleep. (without realizing)
    The machine didn't improve the quality of my sleep.
    Therefore i don't see the benefit of using it.
    I had a mild case of apnea.
    I guess if it's a severe case, you don't really have a choice because it's dangerous to your health.
  19. oceanblue

    oceanblue Senior Member

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    The page came up but there was no sign of a working media player - is there an issue with this link?
    thanks
  20. Dolphin

    Dolphin Senior Member

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    I just tried it again: it works fine in IE but not Opera. So you could tried a different browser perhaps.

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