The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Why is CFS so difficult to detect with standard instrumentation ?

Discussion in 'General ME/CFS Discussion' started by ash0787, Nov 18, 2016.

  1. ash0787

    ash0787 Senior Member

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    Had it for 15 monthes now, kind of had enough of it by this point and I want to go back to normal life,
    if a person met me they wouldn't be able to tell that there was anything wrong with me but I feel like I would die if I tried to even walk 1KM, its sort of like living with an invisible curse in that respect.

    Any ideas as to why there is such a lack of correlation between symptoms / debilitation and detectability of the disease by scientists / doctors ? for example how some that can barely even leave their bed but it does not show on a standard blood test ?
     
  2. lansbergen

    lansbergen Senior Member

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    Standerd bloodtest do not check what I think it is,
     
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  3. slysaint

    slysaint Senior Member

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    the billion dollar question!
    Welcome to the wonderful world of ME.:confused:
     
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  4. Snowdrop

    Snowdrop Rebel without a biscuit

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    I'm no science expert but I think before the x-ray you could have a tumor the size of a baseball feel really ill but there would be no way of detecting what was wrong. It all depends on the type of tool used and how sensitive/specific it is as well as where you go looking I expect.

    Plus the near lack of investigation due to the psychiatry lobby spinning the myth of ME not being a physical illness means that there has not been a thorough effort in the past to look for markers of the disease.

    It's frustrating to have your life taken from you like you're the walking nearly dead. There are plenty of people here who have been dealing with this for decades. Our best hope is for each of us to do what we can to add our voice to make collective appeals to those with the power to help make ME a biomedical research priority.
     
  5. geraldt52

    geraldt52 Senior Member

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    One sure way to not find any answers is to not spend any money to look. For that we can thank the CDC. How long would it have taken to get to the moon if the government would have attacked that with the same enthusiasm.
     
  6. caledonia

    caledonia

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    Because they're not looking at the right things and/or the technology to do so hasn't been developed yet.

    However, it may be coming soon. The Open Medicine Foundation is hot on the trail of a blood test based on metabolomics - which is a new field that looks at the metabolites of cells.

    They are seeing remarkable changes in mitochondrial function. In other words, the body is not producing energy properly at all.

    http://www.openmedicinefoundation.org/

    FYI - They're having a triple matching fund drive now through Nov. 29. If you donate, your gift will be tripled.

    I don't have that much money and am rarely able to donate to anything, but I've donated twice, because this is simply the best research I've seen for our disease ever.

    A simple test would be groundbreaking, from getting the 90% undiagnosed diagnosed, to shutting up the psychiatrists who think it's all in your head, to getting a new non-demeaning name based on the scientific findings. Plus kickstarting even more good research.
     
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  7. Invisible Woman

    Invisible Woman Senior Member

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    Because the powers that be had no will to find, or fund investigations into, the cause.

    About 3 decades or so ago we fell foul of the insidious bio psycho social school of thought. This means that unexplained (& uninvestigated) illness can be attributed to false illness beliefs/weakness of character/downright malingering on the part of the patient.

    Unsurprisingly, this delighted both the UK government, as it meant they could deny welfare payments, and insurance companies, as they could refuse to pay out on policies.

    Do not lose heart, there has been some great research carried out in the last few years. People like David Tuller have spread news of our plight much further afield in the last year or so. Important folk are starting to take notice. The power of social media means that it is harder to shut us up.

    I have lived with ME for nearly two decades and many here have lived with it for much longer. Hopefully, the newly diagnosed are not facing the life sentences that we experienced.
     
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  8. Hip

    Hip Senior Member

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    This discrepancy between the severity of symptoms and the lack of finding anything amiss in normal blood or tissue tests is a characteristic of ME/CFS, and of a number of other diseases, which are collectively called functional disorders. This contrasts to diseases labelled structural disorders, in which there are clear visually or physically observable abnormalities (eg, a build up of plaque in the brain of Alzheimer's patients).

    Patients understandably don't like the name functional disorder, because some psychiatrists and psychologists have exploited the lack of finding anything structurally wrong in the blood or tissues, and come up with their lazy and crackpot theories that functional disorders must be psychologically caused, and "all in the mind". Which is complete nonsense, but it keeps certain none-too-bright shrinks in employment.


    However, in terms of understanding causes, the name "functional disorder' is a good one, because it indicates exactly where the etiology of the disease lies: the cause lies in problems with the functioning of the body, rather that in problems with the structure of the body. And that's why in functional disorders, the cause is not detected by normal visual or physical examination, because there is not much wrong structurally.

    For example, if you consider multiple sclerosis, this can be classed as a structural disorder, because under a microscope you can see the lesions in myelin sheath of the nerves, and it is then immediately apparently why the nerves cannot function properly in MS.

    But you generally don't find any structural pathologies in ME/CFS (although some severe cases do sometimes show a few brain lesions). So it is assumed that the cause of ME/CFS must be functional, meaning there must be problems with the way that the body operates.


    One excellent candidate for the functional cause of ME/CFS is autoimmune attack. If your immune system is creating antibodies that attack and disrupt the micro-machinery inside your cells, and antibodies which attack and disrupt receptors on the cells which receive signals, you will generally not see any of that going on under the microscope, and nothing will look visually and structurally wrong, yet such an autoimmune attack may be profoundly altering the functioning of the body, and thereby causing severe disease.
     
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  9. ash0787

    ash0787 Senior Member

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    I donated like $500 around august time and $250 when they started doing the triple thing, the exchange rate doesn't seem that favorable though, not sure how much I have left but I try to keep a buffer incase the government pulls my supply suddenly.

    I tend to buy less things nowadays because my life is a lot more restricted, used to buy a lot of electronic stuff but I dont really have the physical capability to install and make use of them at the moment.
     
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  10. ash0787

    ash0787 Senior Member

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    That is sort of what I was getting at, there isn't any obvious visual signs to either the eye or on surgical or microscope examination, but also in standard readings like blood PH level.

    So would diabetes class as functional if its usually detected by a lab test ? or does it produce a noticeable difference under microscope of certain organs ( closest example I can think of ), if not what other examples of 'functional' diseases are there ?
     
  11. Hip

    Hip Senior Member

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    I think with type 1 diabetes, you can see destruction and loss of the insulin-producing beta cells in the pancreas, so in this sense I guess T1D can be classed as structural.



    A list of some diseases classified as functional disorders:

    Chronic fatigue syndrome / myalgic encephalomyelitis
    Fibromyalgia
    Postural orthostatic tachycardia syndrome (POTS)
    Multiple chemical sensitivity
    Irritable bowel syndrome
    Overactive bladder syndrome (irritable bladder syndrome)
    Interstitial cystitis (bladder pain syndrome)
    Chronic pelvic pain
    Low back pain of unidentifiable cause
    Non-cardiac chest pain
    Non-specific joint discomfort
    Temperomandibular joint pain
    Dyspareunia (difficult or painful sexual intercourse)

    Refs: 1 2
     
    Last edited: Nov 18, 2016
  12. ash0787

    ash0787 Senior Member

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    Nothing well known and reliably treatable with understood etiology then ?

    I googled treatable functional diseases and got this " The doctor seeing you has concluded that you have a 'functional disorder'. ..... In summary, antidepressant medication and psychological treatment techniques "
     
  13. alex3619

    alex3619 Senior Member

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    This. Historically many diseases have been through this. Even tuberculosis. MS certainly did, as did peptic ulcers. Denial of illness, and ignoring signs that might be misinterpreted, is almost normal. Its not until pathophysiology and diagnostic technology advance that things change. While we have lots of tests showing abnormal pathophysiology in ME and CFS, they are not tests that doctors use, have approved, have available, or know how to interpret.

    Heck, one of the oldest tests, the tilt table test (1940) was available at one point at one of our state hospitals (South Australia) but they closed it down as nobody used it.

    Think of it this way. Can a doctor diagnose a brain tumor with a stethoscope check of the heart? The wrong tools always produce either null results or misleading results.
     
  14. alex3619

    alex3619 Senior Member

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    There is a difference between biochemical functional disorders and the claim to a psychiatric functional disorder. No credible evidence of a psychiatric functional disorder exists, whereas type 2 diabetes is a good example of a biochemical functional disorder.

    I think in some respects the evidence is suggesting that, amongst other things, ME is a variant of type 2 diabetes in that we also frequently have a sugar chemistry abnormality including insulin resistance.
     
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  15. ash0787

    ash0787 Senior Member

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    Not entirely sure on that one but it could be interesting if true as I imagine T2 diabetes has a very large amount of research funding ?
     
  16. whodathunkit

    whodathunkit Senior Member

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    Can't detect it because it's a conglomeration of symptoms rather than a specific disease. The body has only a finite set of symptoms that it can manifest for a seemingly infinite number of pathologies.

    So, for example, people with Lyme might exhibit many of the same metabolic symptoms as someone who has severe NAFLD from crappy lifestyle. The symptoms have essentially the same etiology (compromised liver) but for vastly different causes.

    So it's reasonable to assume that there are pathologies or combinations of pathologies that aren't detectable or known or admitted to cause problems, but that still cause the conglomeration of symptoms that get labeled CFS.

    It's also reasonable to assume that a preponderance of sub-acute pathological problems could manifest as CFS when the problems grow to be too many, crashing the immune system or various cellular processes, or the acuity of a few problems (that in isolation are not terribly troublesome) escalates, until the straw breaks the camel's back, so to speak, and the person manifests the CFS constellation of symptoms. I think I fall somewhere in this category.

    Hope that makes sense. I don't speak the medi- or sci-babble fluently.
     
    Last edited: Nov 18, 2016
  17. alex3619

    alex3619 Senior Member

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    I doubt much of the research would apply, but what I suspect is many diagnosed with T2D will have ME, and will be atypical diabetes patients. This would be a small percentage of the total number and go ignored.
     
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  18. lansbergen

    lansbergen Senior Member

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    Yes
     
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  19. Snow Leopard

    Snow Leopard Hibernating

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    It's easy when you know what to look for, not so easy when you don't.

    The answer is we don't have the right test yet. The standard panel of blood tests tells you very little about most diseases.
     
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  20. Hip

    Hip Senior Member

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    I don't think there are any functional disorders whose etiology is understood. You might find this post gives you a useful brief overview of the enigmatic diseases known as functional disorders.

    But be aware that many doctors think functional disorders likely have psychological causes, rather than subtle and hidden physiological causes. So unfortunately for many medical professionals, the term "functional disorder" is used roughly synonymously with somatoform disorders. It is not synonymous though.
     
    Last edited: Nov 18, 2016

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