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CDC study - A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

Discussion in 'Latest ME/CFS Research' started by Bob, Aug 7, 2013.

  1. Bob

    Bob

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    A pilot registry of unexplained fatiguing illnesses and chronic fatigue syndrome

    Dana J Brimmer, Elizabeth Maloney, Rebecca Devlin, James F Jones, Roumiana Boneva, Caryn Nagler, Lisa LeRoy,Scott Royal, Hao Tian, Jin-Mann S Lin, Jennifer Kasten and Elizabeth R Unger

    doi:10.1186/1756-0500-6-309
    BMC Research Notes 2013, 6:309
    Published: 2 August 2013

    Provisional Abstract:
    http://www.biomedcentral.com/1756-0500/6/309/abstract
    Provisional full article PDF:
    http://www.biomedcentral.com/content/pdf/1756-0500-6-309.pdf

    Extract from the abstract (results):
    We registered 827 healthcare providers. Forty-two providers referred 88 patients, and 58 patients (66%) completed clinical evaluation. Of the 188 CFS support group members, 53 were self-referred and 46 (87%) completed the clinical evaluation.
    Of the 104 participants completing evaluation, 36% (n = 37) met the criteria for CFS, 17% (n = 18) had insufficient fatigue or symptoms (ISF), and 47% (n = 49) were found to have exclusionary medical or psychiatric illnesses.
  2. Simon

    Simon

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    This is kind of interesting, but I find it very odd that they only used Fukuda criteria; I'm not sure when the fieldwork was carried out but it seems bizarre not to have included the Canadian Consensus Criteria as well. Can't be operationalised? Lipkin et al managed it for their XMRV study (and ongoing pathogen study). Interesting too that many of those with a prior CFS diagnosis were likely to not meet the case definiton.
    WillowJ, Valentijn and Bob like this.
  3. Bob

    Bob

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    Well, it is the CDC, so maybe it's not so surprising?
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  4. Iquitos

    Iquitos Senior Member

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    Right. Unger is dedicated to finding new and creative ways to maintain the status quo, while promoting the illusion that things are changing.
    Andrew and ukxmrv like this.
  5. biophile

    biophile Places I'd rather be.

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    General findings were typical of similar studies: lots of people presumed to have CFS do not in fact meet the criteria and/or are excluded because of a medical or psychiatric diagnosis.

    The below finding would be an interesting twist on the claim that support groups are a "risk" (associated with but often implied as the cause of, despite the evidence not supporting causal inferences) with poorer responses to CBT/GET:

    CBT/GET studies are supposed to be doing such tests though, right? Oh wait, many do not even use the CDC criteria, let alone something like the CCC. If PACE can "operationalize" the Oxford criteria by slapping on a few questionnaires, why cannot something be done for the CCC? Jason et al even published some suggestions in 2009.

    It is also obvious that those in support groups could be more ill, something which is indirectly indicated in this paper:

    ukxmrv, Valentijn, Firestormm and 2 others like this.
  6. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    The fact that someone has diabetes or hypothyroidism does not mean that they cannot also have CFS. I know from personal experience. My ME/CFS did not go away when I developed hypothyroidism.
    WillowJ likes this.
  7. Firestormm

    Firestormm Content Team Lead

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    I am interested Bluestem. In what respects did you feel the CFS had not 'gone away'? Thanks :)
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    In all respects. None of my ME/CFS symptoms have gone away since I became hypothyroid.
  9. biophile

    biophile Places I'd rather be.

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    Yes, good point. Table 1 has the "Exclusion Referral Criteria"*, which included:

    • Insulin-dependent diabetes.
    Uncontrolled diabetes type II (HgbA1c <9%).
    Uncontrolled hypo- or hyper-thyroidism.
    (* "The registry inclusion/exclusion referral criteria are not for CFS classification.")

  10. WillowJ

    WillowJ Senior Member

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    the Fukuda criteria was designed for research, which is why it's a little picky about exclusions (in some spots). In clinical practice, things should be handled differently. Clearly it's possible to have more than one disease, and in fact people do.

    If you have diabetes or Lupus or Ehlers-Danlos syndrome it's somewhat likely you'll have complicating and even additional conditions, and there is no reason to expect things would be different than this for ME patients.
    Little Bluestem and Simon like this.
  11. taniaaust1

    taniaaust1 Senior Member

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    I wonder if one of the big reasons why there was so many other serious illnesses in the self refered ones from CFS support group, could be cause many doctors once someone is diagnosed with CFS, one then often gets poorer health care and less tests are done and symptoms often ignored so hence things like diabetes or hypothyriodism developing after CFS diagnoses could be missed.
    MeSci, Valentijn and WillowJ like this.
  12. Gijs

    Gijs

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    It is verry sad to see this type of research. It look to me as 20 years ago. There are now objective tests to move this disease forward. The CDC do not want move this disease forward. The CDC is a verry corrupt organisation.
    Iquitos likes this.
  13. Bob

    Bob

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    Same with me. I developed hypothyroidism a few years after getting ME. But it matters whether the hypothyroidism is treated or not. In other words, you can't be diagnosed with CFS/ME until hypothyroidism is treated, and thyroid levels are within normal range. Once treated, then you can get a CFS/ME diagnosis. This seems to be the case with this study, as per biophile's post, above.
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  14. Firestormm

    Firestormm Content Team Lead

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    Interesting. I wonder then if 'misdiagnoses' (or 'alternate diagnoses') that have been reported in the past could be considered premature...

    As you might have picked up - my sleep study determined on a brief assessment of the mass of data - that my brain cell was starved of oxygen and waking me up every few minutes to breathe. Now if I should be treated at night with, say, oxygen or indeed receive a diagnosis of chronic apnea...

    Very difficult with ME determined in the way it is to say whether or not it has been resolved; or if indeed something like treating sleep with oxygen at night has been effective... Though like hypothriodism you'd test brain/oxygen levels in another sleep study I guess.

    But then... 'unrefreshing sleep' and 'cognitive dysfunction' could all be helped by fixing oxygen deprivation at night.

    My point here is - how the hell do we really know? :)
  15. Firestormm

    Firestormm Content Team Lead

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    @ Kina sorry I am unable to edit my posts for some bizarre reason today. Very strange - like me :D

    I meant to add 'And both of these symptoms are of course used to help diagnose ME.' To my second to last sentence.
  16. Bob

    Bob

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    You get the sleep apnea, or whatever it is, treated, and then see if you still have ME symptoms.
    Unless I've misunderstood your question?


    Try a different browser as a temporary remedy. If the problem doesn't clear up soon, clear your browser cache. (It usually does the trick.)
    Firestormm likes this.
  17. readyforlife

    readyforlife Senior Member

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    I'm confused what this study is even trying to accomplish??? And If i'm reading correctly the study states "We registered 827 healthcare providers" Where are these 827 healthcare providers??? I live in Seattle and can't find one good cfs/me health care provider.
    Iquitos likes this.
  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    I missed the fact that these exclusions were just for this study, not for CFS diagnosis. :sluggish: I can understand why they would not want subjects with additional illnesses in the study. Don’t a lot of people with ME/CFS have high C-reactive protein? I would expect these exclusions to once again skew the study participants to those who are less severely ill and/or have been ill for a relatively short time.
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  19. WillowJ

    WillowJ Senior Member

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    I have to wonder what disease they think they are enrolling in this patient registry. Dr. Unger has stated that they previously thought CFS would be simple and they were now moving away from this idea, but it looks to me like they continue to make the same mistake.

    Autoimmune, inflammatory, infectious, and cardiovascular disease are actually leading hypotheses by the leading scientists in the field. Also sleep disorders, even apnea and narcolepsy, are expected. etc. Does CDC not read the literature?
    valentinelynx, SOC and MeSci like this.
  20. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Am I correct in understanding that these are people who were diagnoses with CFS, but were excluded from the study due to co-morbid conditions? If so I am surprised at the number with hypertension. I thought hypotension was more common.

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