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IOM’s Redefinition of ME Invites Over-Diagnosis and Risks Inclusion of Primary Psychiatric Disorders

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Feb 11, 2015.

  1. Nielk

    Nielk

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  2. anciendaze

    anciendaze Senior Member

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    To get back to the central question on this topic, and not simply trail off into flame wars, trolling and irrelevancy, there are three levels at which diagnostic criteria are important: 1) criteria used to form research cohorts, 2) clinical diagnosis and treatment, 3) disability claims. My concern is far from hypothetical. We have previous bad experience with problems in each, concerning diagnosis and exclusionary conditions. This works in both directions, with some researchers willing to exclude any physiological abnormality to promote their agenda, and others completely ignoring exclusionary criteria.

    In the "Lipkin study" there was a kind of "Mexican stand-off" between factions with irreconcilable preconceptions, which removed about 85% of patients actually being treated for "CFS". This apparently included everyone who tested positive in the original Science paper being contested. In the study by Leonard Jason, testing the "empirical definition", this swelled the cohort created by those criteria so that it was dominated by patients with a primary depressive disorder. If you wait to treat ME/CFS until you have "the answer" to all depressive disorders you are going to wait a very long time. Depressed patients may well have problems with a physiological basis, (I would guess this already applies to 10%) which is complicated by secondary depression, but that is not the best cohort to use if you really want to understand etiology. The existence of a subset of patients without secondary depression ought to be welcomed as a chance to make progress in a field virtually without much useful progress for ages.

    In the PACE trial researchers achieved the impossible by having it both ways. They excluded the vast majority of patients who were referred to them as "CFS patients", while apparently performing no clinical testing to find biological exclusionary conditions. This was necessary to accomplish both stated and unstated economic goals. Had the cost of any testing been included their economic claims would have fallen completely flat. To keep costs down you need to avoid both high treatment costs and high testing costs needed to exclude patients who might actually die as a result of misdiagnosis. (Simple examples: subclinical myocarditis, Lyme disease, various autoimmune disorders, various endocrine disorders, various neurological diseases of unknown etiology, early stages of any number of cancers. Did any of those "CFS" patients have a thorough cardiological, neurological, endocrinological or rheumatological work up? )

    Both the U.S. HHS and the U.K. NHS+DWP are extremely worried about a flood of disability claims, and under orders to hold the line on rising costs, particularly if we are talking about long-term disability of mysterious origin. This is perhaps the major factor in institutional inertia preventing research progress. If you can't even consider the question of organic disease in research without being struck by lightning bolts you certainly will never resolve these questions. Quite a number of people who are not suffering at present, and are drawing paychecks, find the current impasse quite tolerable.

    When it comes to advice actually useful in clinical practice, we have a serious problem of not having any cure to recommend, falling back on symptom relief which would presumably take place in the absence of a clear diagnosis. As I've already stated on this topic, we can find many practicing doctors who will interpret each of the proposed diagnostic criteria in ways at odds with those considered by the current report. Changing ideas "based on vast clinical experience" will not be easy. Nor is there any diplomatic way of telling practicing doctors much experience is only "half-vast", being derived by repeating the same mistakes over time.
     
    Last edited: Feb 12, 2015
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  3. lansbergen

    lansbergen Senior Member

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    @ vic I asked for a definition.
     
  4. Valentijn

    Valentijn Senior Member

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    CBT has been proven not to help ME patients in any objective manner. If it's helping you, I suggest seeking another diagnosis.
     
  5. lnester7

    lnester7 Seven

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    It took me 3 years to understand PEM while sick. At first mine was not very obvious since I was a slow progress onset and it would take days to hit. Things are so bad and confusing at first while every single system u have is failing and miss behaving.

    I just wonder how regular doctors will understand PEM w a write up of a few pages when it took me a while to understand it myself while having it. Funny enough I ask some patients here, they say do not have PEM (while I talk to them I realize they do, even they have not learned to recognize it).

    Just saying.
     
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  6. slayadragon

    slayadragon Senior Member

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    twitpic.com/photos/SlayaDragon
    Following is a quotation from the Canadian Consensus Criteria.

    >Co-morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto’s thyroiditis, Sicca Syndrome, etc. Such co-morbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes”.

    Again:

    “IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression.”

    This is perfectly clear. The authors of the CCC made a special effort to state that pre-existing depression should NOT preclude anyone from being diagnosed with this disease.

    The new definition has problems, which should be addressed, in my opinion.

    But the purported problem cited in this blog is not one of them.
     
  7. anciendaze

    anciendaze Senior Member

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    @slayadragon

    The problem we face is that detailed clinical criteria for differential diagnosis have not been stated, and there is no clinical experience with this definition. Such details and experience do exist for the CCC. What we have so far is a promissory note for a new clinical definition planned to be rolled out and revised within 5 years. At that point it will be possible to test it.

    After seeing what happened with "operationalization" of the Fukuda definition, over a period of 11 years, I think concern is justified.
     
  8. A.B.

    A.B. Senior Member

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    The IOM recommended that the U.S. Department of Health and Human Services develop a toolkit for screening and diagnosing patients with ME/CFS.

    This is where it could go wrong.
     
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  9. Ember

    Ember Senior Member

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    The CCC excludes primary psychiatric disorders. Wouldn't depression listed as a co-morbid entity indicate secondary depression?
     
  10. slayadragon

    slayadragon Senior Member

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    No, it states specifically that the depression can pre-date the ME for years, which would suggest that it should not be considered "secondary" to the ME.
     
  11. Ember

    Ember Senior Member

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    I hadn't noticed this statement in the CCC before:
    Under “Differences Between ME/CFS and Psychiatric Disorders,” the Overview of the Canadian Consensus Document states :
     
  12. slayadragon

    slayadragon Senior Member

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    I think it is clear what they are saying here is that even though having depression (including depression that preceded getting "ME/CFS") does not preclude the diagnosis of ME, it is possible for physicians to find whether patients have "ME/CFS" rather than or in addition to depression by using these guidelines.

    How would you know if something is "primary"? I would guess that it would have to have the ability to explain all the symptoms in ME. Which major depression cannot.

    So I would think that if patients met the criteria for "ME/CFS" here (such as having PEM), and especially if they were not responsive to conventional treatments for depression (such as talk therapy or antidepressants), then their depression would be considered either co-morbid or secondary.
     
    Last edited: Feb 13, 2015
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  13. alex3619

    alex3619 Senior Member

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    I think the notion of mind is a convenient label and a category mistake. It does not exist. There is only brain and brain function. There are thought disorders, at least one, which I have discussed repeatedly now, due to irrational belief systems. These should not be medicalized.

    No psychogenic illness has ever been soundly demonstrated. How this is usually approached is more religion than science. Its about belief, not evidence and reason. Its about validation of existing ideas, not uncovering the reality.

    Now, syndromes such as depression and anxiety are still not understood. There is no way to be sure either is connected with ME or not. We simply do not know enough about these syndromes, and I include SEID as a syndrome. I do think SEID is comprised of disease/s, but I do not know if its one or two, or three or ten. The biochemical evidence to date suggests two different diseases, but its only suggestive.

    Psychs are largely unaccountable. They can practice hypothetical unproven dangerous medicine on anyone if they deem it necessary, typically without sanction. This medical abuse needs to end.

    No definition, ME or SEID or whatever, will stop them. This is a medico-political reality. It needs to be addressed separately.
     
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  14. Ember

    Ember Senior Member

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    I suspect that's where this statement comes in: "Pay careful attention to the characteristics, dynamics of progression and correlation among symptoms."
     
  15. alex3619

    alex3619 Senior Member

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    Its still only an educated guess. There is no objective testing, and we do not know which, if any, DSM diagnosis represents a discrete disease entity.
     
  16. anciendaze

    anciendaze Senior Member

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    The quoted passages show that the CCC has attempted to deal with differential diagnosis when there is comorbid depression. For more diagnostic confidence you need to go through a rather complicated weighting scheme to combine individual signs and symptoms, or consult previous clinical experience in using it, which does exist. No such experience exists with SEID and the proposed criteria. I feel sure the people who will implement any proposed criteria will have an unwritten criterion: "under no circumstances ask Paul Cheney what he has been doing for 30 years."

    If I knew that the current sketch of proposed criteria were to be implemented under the authority of Dr. Montoya I would feel more confident. Unfortunately, he is simply an adviser and consultant who reviewed the present document. This committee can only make recommendations, and has yet to present actual clinical guidelines. From present wording, I gather that those they intend to present will also fall far short of being definitive even as interim standards. At this point we are reading tea leaves to discern intent of a body which has no real authority.

    I will again refer people reading my posts to the apparently reasonable parts of the Fukuda definition, and the way these were "operationalized" to eliminate everyone with objective evidence of physiological disease. The main reason S. Straus and W. C. Reeves will not be directing implementation of this definition is their own mortality, not any discernible change in institutions.
    (Exclusion of all patients with physiological problems even took place in the "Lipkin study", though I do not blame W. Ian Lipkin. He was trying to act as a broker between irreconcilable forces.)
     
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  17. SOC

    SOC Senior Member

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    I think we may be running into confusion over the meaning of an exclusionary condition. It's my understanding that a condition is exclusionary (in diagnosis -- research is another issue) when treatment for that condition alleviates the symptoms in question.

    For example, a patient presents with chronic fatigue, pain, and other symptoms that might suggest a CFS diagnosis. The physician should exclude other diagnoses by testing and treatment. If the symptoms relevant to CFS diagnosis are not relieved by treatment for potentially excluding conditions then the patient gets a CFS diagnosis. On the other hand, if antidepressants, for example, relieve the symptoms common to both conditions, then the patient is diagnosed with primary MDD and not CFS. The same for hypothyroid. If thyroid treatment relieves the symptoms that might be CFS, then the patient has a primary thyroid condition, not CFS.

    Therefore, it is possible to have both MDD and CFS, but CFS symptoms (PEM would be an obvious one) are not relieved simply by treating the MDD. It ought to work... in an ideal world... which this isn't.

    This process assumes that all diagnosing physicians are expert and responsible diagnosticians and not ignorant or lazy -- not the best assumption as we all know.

    The SEID diagnosis criteria should, in theory, avoid the problem of what to exclude by making the criteria inclusive rather than exclusive. There is no longer the need to test for everything else (which the PCPs won't do) or try treating potentially excluding conditions (which leads to months of unnecessary treatment with ADs, etc). Nevertheless, I expect a lot of misdiagnosis in the early days due to ignorance of the details of the diagnosis criteria by diagnosing physicians. I'm not sure there's a way around this problem other than time and education. Complete change doesn't happen overnight.
     
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  18. Kati

    Kati Patient in training

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    Look, people with mental illness are people too. They too get sick with the flu and all other illnesses including cancer, diabetes and heart diseases.

    SEID has just been announced a biological illness. They are saying that patients with a mental illness can also have a physical illness. it makes sense.

    I believe patients are scared that these patients will 'pollute' the cohort. I very much disagree and I believe that we will find that with emergence of precise testing and biomarkers such as 2days CPET, viral markers at disease onset, tilt table test, there will be patients who suffer from both mental and physical illness.

    A good clinician will be able to see the nuances. Everyone deserves competent care not just the mentally healthy.
     
    Last edited: Feb 13, 2015
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  19. SOC

    SOC Senior Member

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    Well there's your problem. ;)

    1) Well all need a good clinician who will see the nuances. How many of us have found one? They seem to be very few and far between.

    2) Everyone deserves competent care. Very few PWME are getting it, regardless of mental health status.
     
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  20. beaker

    beaker ME/cfs 1986

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    Well said.
     

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