Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
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Research: Diagnostic classification of ME, CFS and Chronic Fatigue

Discussion in 'Latest ME/CFS Research' started by Firestormm, Apr 23, 2012.

  1. Ember

    Ember Senior Member

    Some members of the Guideline Development Group, who apparently shared your concerns, weren't prepared to follow the WHO classification for ME. As a result, the NICE Guidelines followed instead the CMO 2002 recommendation “that the composite term CFS/ME is used and that it is considered as one condition or a spectrum of disease.”

    Here's a background quotation:
  2. PEM is still just a symptom, not a disease by itself.

    The name ME was given because they found CNS inflammation. By definition, without the CNS inflammation, it is not ME.

    Note, however, that there are many more diseases with CNS inflammation, and also many more diseases with PEM as a main symptom. Not all CNS inflammation is ME, and not all PEM is ME.

    ME is also postviral, causes muscle pain, and involves the cardiovascular system. That narrows it down to a single disease entity.
  3. A combination of factors, like a sleeper and a trigger, might be necessary to induce ME. The trigger (the enterovirus) will determine the length of the incubation period, while the sleeper (the herpes virus) may have been present for quite some time. This is the model that best fits the data, IMHO.
    merylg likes this.
  4. Ember

    Ember Senior Member

    I'm curious about your take on this interview (from about 1:03:45 to 1:04:30) that makes PEM sound unique to CFS:

  5. The anaerobic threshold is indeed low in ME. This is the main cause of muscle pain.
    I'd say that PEM is first of all caused by ATP/ADP depletion. A weight increase can be a consequence (rather than a cause), because your metabolism may respond by hoarding fat. Taking carnitine may counter that in part, btw. But other patients lose weight.

    None of this is unique. You can for instance be born with a mitochondrial defect.
    merylg likes this.
  6. Ember

    Ember Senior Member

    Thanks. I'm interested in the underlying pathophysiology of PENE and whether it's unique to ME. I wonder where ATP/ADP depletion would fit in with the description given of ME (ICC) here:
  7. Firestormm


    Cornwall England
    Without wishing to stray too far off topic, Guido, might you for my benefit point to where this was established please? I assume it was the result of a research paper that attached the name to the symptomology? Are we talking about the time ME was afforded it's categorisation by the WHO, or perhaps earlier, at the point in time it was being talked about in the Lancet i.e. 1969(?) 1956 respectively? Thanks.
  8. Tito

    Tito Senior Member

  9. Ember

    Ember Senior Member

    This video, posted by heapsreal yesterday, suggests that ATP depletion is far too general an explanation of fatigue to successfully challenge the more specific claim that PEM, as measure by the Pacific Fatigue Lab, is unique to CFS or that PENE may be unique to ME:

  10. Bob


    England (south coast)
    The latest edition of Breakthrough magazine has a summary.

    ME Research UK - Breakthrough Magazine:
    Autumn 2012 issue, page 13, third column, under 'Belgium':

    Post-exertional symptoms for diagnosis
    There is much discussion about particular
    criteria for the diagnosis of ME, CFS, PVFS,
    CFS/ME or ME/CFS – just listing these
    acronyms makes the head spin. But, in the
    absence of hard data from real patients,
    much of the speculation generates more
    heat than light, and produces more angst
    than understanding. That’s why the results
    of a recent investigation on patients from
    the Maes Clinic in Belgium are so valuable.
    The investigators raised the question
    of whether clinical differences could be
    observed between CFS patients with postexertional symptoms and those without such
    symptoms. Using statistical models, they found
    that a combination of fatigue, a subjective
    feeling of infection, and post-exertional
    malaise defined groups of patients in which
    distinct differences in clinical symptoms (and
    inflammatory biomarkers) could be found.
    The researchers’ conclusion was that
    whilst the traditional (Fukuda) definition of
    CFS can adequately distinguish between CFS
    and uncomplicated ‘chronic fatigue’, patients
    fulfilling the Fukuda definition should be
    subdivided into those with post-exertional
    malaise and those without. Interestingly, the
    UK’s NICE Clinical Guideline of 2007 insists
    that post-exertional symptoms should be
    present for a diagnosis of ‘CFS/ME’ to be
    made, so the importance of post-exercise
    symptoms is already recognised formally. The
    challenge remains to get GPs and healthcare
    professionals to apply the criteria in practice
    when diagnosing patients in the clinic.
  11. The magazine is not entirely correct. Maes considers ME and CFS to be two different diseases.

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