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ME or CFS?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Andrew, May 8, 2012.

  1. Andrew

    Andrew Senior Member

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    A comprehensive study of the Tahoe cluster found that CFS patients have neuro problems.

    The whole idea that we don't have neuro problems comes from the CDC, and gets promoted by people who want to dissociate themselves from the CFS name. But it is not accurate in light of what the founding cluster records show.

    http://www.annals.org/content/116/2/103.short
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  2. garcia

    garcia Aristocrat Extraordinaire

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    Andrew just because the patients at Tahoe were diagnosed with "CFS" doesn't mean that some/most/all (delete as appropriate) of them don't have ME. The ME diagnosis doesn't exist in the US. Even in the UK ME patients are diagnosed with "CFS".
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  3. Ember

    Ember Senior Member

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    You might just as easily blame Jason et al., who the ME-ICC cites when comparing CFS with ME: "Some symptoms of the Fukuda criteria overlap with depression, whereas the Canadian Consensus Criteria [20] differentiate patients with ME from those who are depressed and identify patients who are more physically debilitated and have greater physical and cognitive functional impairments [21]."

    Here are some conclusions from the cited Jason et al. article, Comparing the Fukuda et al. criteria and the Canadian case definition for chronic fatigue syndrome:

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  4. SOC

    SOC Back to work (easy, part-time work)

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    All true, but that does not mean the CCC distinguishes ME from CFS. It does seem to distinguish between people with neuroimmune illness and depression and other (perhaps undiagnosed/misdiagnosed) illnesses. As I understand it, there is also some degree of concern that the CCC may unintentionally exclude patients in the early stages of the illness, or (if misused/misunderstood) patients how have some symptoms under control with treatment.

    All Jason really said in his article is that the CCC does a better job of selecting ME/CFS patients than does Fukuda which has too much overlap with other conditions. Bottom line: Fukuda doesn't select CFS patients, it selects a mixed group of patients with some similar symptoms, mostly fatigue.
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  5. Ember

    Ember Senior Member

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    By definition, as I understand it SOC, the CCC selects ME/CFS patients, the ICC selects ME patients, and Fukuda selects CFS patients. (That's what case definitions do.) So it doesn't make sense to me to say that Fukuda doesn't select CFS patients. The ICC does distinguish ME from CFS, ME being more specific than CFS.
  6. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    The real distinction should be between chronic fatigue and me, not cfs and me. I think chronic fatigue syndrome got caught in the cross-fire because of its name. Too easy to drop off the syndrome. So ICC should be weeding out those with chronic fatigue, not cfs.
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  7. SOC

    SOC Back to work (easy, part-time work)

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    CFS, ME/CFS, and ME are not 3 independent conditions. At best some are subsets of others. At worst they are all the the same fundamental neuroimmune illness in different stages or forms.

    Fukuda claims to select CFS patients, but it doesn't so a very good job of it, so it's not as much nonsense as it sounds. :D The name "CFS" was created to describe the Tahoe cohort who are clearly not simply fatigued. Fukuda, while claiming to select patients with the same illness as the Tahoe cohort, clearly does not. What Jason's article says is that CCC does a better job of selecting patients with the illness labeled "CFS" by the CDC after the Tahoe outbreak than does Fukuda.

    I think Rusty J made the important point:
    We need to distinguish between chronic fatigue and our illness. Chronic fatigue is a symptom of very many illnesses. Including chronic fatigue patients in research about our illness has included an untold amount of confusion and misinformation. I think we all agree on that.
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  8. Ember

    Ember Senior Member

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    Just to clarify, I didn't say that CFS, ME/CFS and ME were three independent conditions. In my case, I was first diagnosed with CFS; after the publication of the CCC, I was diagnosed with ME/CFS; with the publication of the ICC, I was diagnosed with ME. The case definitions by which I've been diagnosed have become increasingly restrictive, but I continue to fit all three definitions. (There is no case definition for the symptom, chronic fatigue.)

    I wonder if this discussion doesn't better belong on another thread: http://forums.phoenixrising.me/show...uch-higher-doses-of-GCMAF&p=260515#post260515.
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  9. SOC

    SOC Back to work (easy, part-time work)

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    Ah, I see. :D
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  10. taniaaust1

    taniaaust1 Senior Member

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    Chronic fatigue shouldnt be being confused with CFS and ME anyway.

    For many of us it isnt a case of CFS being caught in a cross fire.. but more about that ME people cant get the care they need due to most doctors only knowing about CFS (nothing to do with chronic fatigue).

    Most CFS doctors arent even aware of much of what ME patients experience and have going on eg the disabling autonomic issues we have etc. Ive seen quite a few experienced CFS specialists over my time with this illness (Im not talking about psych ones) but none of them know of ME. That interferes with many of the issues I have not being treated or attention going to them. It puts my life and others at risk.
    ...

    sorry i just realised Ive allowed myself to be pulled into off topic discussion again. Could the mods move this post along with the others like it.
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  11. Andrew

    Andrew Senior Member

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    This is one of those things that could end up going round and round. But basically I agree. I just get frustrated because the application of the names is so screwed up. And the fact is that whenever I see a big ME conference in the UK, most of the doctors they invite are CFS doctors. I just think the distinction is an artificial one, in terms of the actual illness. The only distinction comes from the bastardization of the illness definitions on both sides of the pond.

    And I guess I'm off topic now.
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  12. taniaaust1

    taniaaust1 Senior Member

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    In the UK.. what is actually called ME is CFS.. with some real ME patients actually being discluded from having ME there due to their actual ME abnormalities.
  13. garcia

    garcia Aristocrat Extraordinaire

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  14. hixxy

    hixxy Woof woof

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    I prefer the ICC, nightingale is a bit drastic and is very harsh on the CFS definition. There are many points in the CFS column of their CFS vs ME comparison that are blatantly untrue. For example, CFS patients don't have any autonomic nervous system dysfunction. There are plenty of people I'm certain that don't quite fit the nightingale dfefinition that have autonomic nervous system dysfunction.

    Just as there are many people who fit the ICC perfectly that did not have a rapid onset.

    Dr Byron Hydes definition of ME and CFS is radical. I even saw listed somewhere on their website that top ME specialists. The specialists most commonly referred to on these forums weren't listed I assure you.
  15. hixxy

    hixxy Woof woof

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    There are also abnormal SPECTs seen in patients who don't fit the full ICC or Dr Byron's criteria.

    SPECTs are abnormal in so many diseases that I can't see how you could rely on it for ME diagnosis?

    This is precisely why so many neurologists don't like SPECT scans.

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