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Comparing the IOM criteria to the CCC criteria

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 21, 2015.

  1. Nielk

    Nielk

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    IOM Criteria


    Diagnosis requires that the patient have the following 3 symptoms:

    1. Fatigue - substantial reduction or impairment in the ability to engage in pre illness levels of occupational, educational, social, or personal activities that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest

    2. Postexertional malaise (an exacerbation of some or all of an individual’s ME/CFS symptoms after physical or cognitive exertion, or orthostatic stress that leads to a reduction in functional ability),

    3. Unrefreshing sleep - Feeling unrefreshed despite sleeping many hours and other sleep disturbances.

    At least 1 of the 2 following manifestations is also required:

    • 1. Cognitive impairment OR
    • 2. Orthostatic intolerance
    Notes:

    Frequency and severity of symptoms should be assessed. The diagnosis of systemic exertion intolerance disease (myalgic encephalomyelitis/chronic fatigue syndrome) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.

    Other clinical features that may be seen in patients with this disorder are a history of certain infections known to act as triggers for ME/CFS that preceded the onset of symptoms and many types of pain, including headaches, arthralgia, and myalgia. Other complaints, such as gastrointestinal and genitourinary problems, sore throat, tender axillary/cervical lymph nodes, and sensitivity to external stimuli, are reported less frequently (Buchwald and Garrity, 1994; Jason et al., 2013; McGregor et al., 1996). These features, when present, can support the diagnosis of ME/CFS.

    No exclusions required.

    Conclusion: One of the committee’s most important conclusions is that a thorough history, physical examination, and targeted workup are necessary and often sufficient for diagnosis of ME/CFS.

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    CCC Criteria


    1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level.

    2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient’s cluster of symptoms to worsen. There is a pathologically slow recovery period - usually 24 hours or longer

    3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms.

    4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles, and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity.

    5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present:

    confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload1 phenomena: cognitive, sensory – e.g. photophobia and hypersensitivity to noise - and/or emotional overload, which may lead to “crash”2 periods and/or anxiety.

    6. At Least One Symptom from Two of the Following Categories:

    __ a. Autonomic Manifestations: orthostatic intolerance - neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea.

    __ b. Neuroendocrine Manifestations: loss of thermostatic stability – subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change - anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress.

    __ c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flulike symptoms, general malaise, new sensitivities to food, medications and/or chemicals


    Notes:

    *There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset.

    **Some patients have been unhealthy for other reasons prior to the onset of ME/ CFS and lack detectable triggers at onset or have more gradual or insidious onset.



    Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison’s disease, Cushing’s Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the patient’s history and physical examination, is achieved by laboratory testing and imaging. If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise.
     
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  2. Nielk

    Nielk

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    The features that are in common for IOM and CCC criteria:

    6 months of fatigue
    PEM
    Sleep dysfunction

    -----------------------------------------------------------------------------------------------------------------------------------------------

    Distinct for IOM:

    1 of the following 2
    Cognitive impairment
    Orthostatic Intolerance

    No exclusions

    -----------------------------------------------------------------------------------------------------------------------------------------------

    Distinct for CCC:

    Pain - myalgia
    2 or more of Neurological - cognitive dysfunction
    1 feature from 2 of the following
    Autonomic
    Neuroendocrine
    Immune manifestations

    Excludes active disease processes that explains the main feattures of the disease
     
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  3. halcyon

    halcyon Senior Member

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    I really wish they would have not included this. The ICC did away with this requirement and I believe it's a step in the right direction. I don't know about everyone else, but I had symptoms of ME one month after my acute triggering infection. If I could have received an accurate diagnosis at that point I could have avoided stupidly trying to exercise myself back to health and severely worsening my condition unknowingly.
     
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  4. oceiv

    oceiv Senior Member

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    This is excellent, seeing these side by side and comparing the symptoms. Thank you! The symptoms exclusive to each helps crystallize why my illness is so much better described by the CCC than by the IOM. Does anyone have a link handy for the CCC? My bookmarked link is now broken.
     
    Last edited: Feb 25, 2015
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  5. Nielk

    Nielk

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    http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
     
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  6. oceiv

    oceiv Senior Member

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    Thanks, Nielk. Also in that document is info about Leonard Jason's study of comparing patients who met the CCC versus patients who met the Fukuda definition. The patients who met the CCC were more ill, more impaired, more fatigued, weaker and had more neurological and more neurocognitive symptoms. This squares with my impression of the people who report concerns that the IOM definition doesn't fit their illness more often being severely-ill patients.

    I asked similar questions in the Questions for the IOM panel member thread, did the simplified criteria in the IOM report lead to the new definition being a "milder" illness than that described by the CCC? Are people who have those left-out symptoms now less likely to get diagnosed?

    How many patients feel that the CCC better decsribes their illness? How many people don't fit the IOM criteria, but do fit the CCC criteria? What happens to these patients now? The report doesn't really address severely-ill patients. What happens to severe patients now? A different definition changes a lot. A "milder" illness definition means severe patients continue not being studied.

    (I put milder in quotes because those patients who have mild or moderate CFS/ME still have a serious and life-altering illness).
     
    Last edited: Feb 25, 2015
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  7. SpecialK82

    SpecialK82 Ohio, USA

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    About 6 months of fatigue:

    They included the 6 months of fatigue to exclude "post-viral fatigue", but they were very specific in saying that even under 6 months, the patient still needs treatment.
     
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  8. Sea

    Sea Senior Member

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    Many people who get one of the viruses which commonly trigger ME/CFS have a post viral illness indistinguishable from ME\CFS for many months. It would muddy the waters even further if they were all to receive the same diagnosis that we do. Even as it is I suspect those who recover in a year or so may not have the same illness as those who don't recover.

    Where to draw a line is tricky. Until we can properly predict from the beginning who will remain sick the cut off is necessarily arbitrary. Of course we can't predict until we know what goes wrong and we can't find out what goes wrong unless the right people are studied. The Dubbo study followed people from the beginning of infection to see if they could find differences in those who recovered and those who remained ill. Those who remained ill over time were:

    "The case rate for provisional post-infective fatigue syndrome was 35% (87/250) at six weeks, 27% (67/250) at three months, 12% (29/250) at six months, and 9% (22/250) at 12 months."
     
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  9. halcyon

    halcyon Senior Member

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    I see your point, but if the symptoms all match I feel like erring on the side of caution can't hurt. We don't know what turns PVFS into ME (or if this is even what happens). I've read stories of many people that got worse after trying to push through this apparent post-viral state (that may not even be "post" at all) by returning to work or exercise too soon. Perhaps early detection and intervention could help prevent this disease in some.
     
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  10. Sea

    Sea Senior Member

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    I think a better way to proceed is to improve the advice and symptom treatment given to those with post-viral symptoms and to warn them of the importance of rest and the possibility of a chronic illness if they push themselves. By giving a diagnosis of ME/CFS straight away and including these people in the general research you are diluting the cohort by at least 25% (if my maths is correct, looking at 35% still being sick at 6 weeks as opposed to 9% at 12 months)
     

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