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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Diagnosing CFS/ME not Black and White

Discussion in 'ME/CFS Doctors' started by Mohawk1995, Feb 6, 2017.

  1. Mohawk1995

    Mohawk1995 Senior Member

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    I am both a health care professional (not a physician or someone who can prescribe medicine) and a father of a son who suffered terribly with CFS/ME and after 8 + years is actually doing quite well.

    The problem with diagnosing ailments in the human body is that we are so complex. Our nervous system alone is mathematically the most complex system in the universe and that is not taking into account all of our other systems. No offense to some who have posted, but there simply is not enough knowledge of such a complex system to definitively assign certain diagnosis to a cluster of symptoms especially those associated with something like CFS/ME. In fact the latest research is placing CFS/ME, Chronic Pain, Fibromyalgia, Non-epileptic seizure disorders, "Psuedo-stroke", hemiplegic migraines, RSD, Migraines in general and others yet to be clearly defined under the umbrella of centrally sensitized disorders. This means that that subconscious brain has an increased sensitivity to the person's environment or any stimuli (external or internal) that find their way into the processing centers of the brain. The brain processes and "interprets" this information and then creates a response. Pain for some, fatigue for others, nausea/reflex, weird sensations, cognitive issues/brain fog, sweating, temperature intolerance, anxiety, weakness, balance issues/dizzyness and more. Ultimately these "symptoms" are warning bells going off to alert your conscious brain of an "interpreted threat". To understand this in CFS/ME means that you may have a variety of symptoms including those not noted on the criteria. The criteria that have been developed are inclusive NOT exclusive. This means that you can have any or all of the criteria, but that it does not mean you have to ONLY have them to fit the diagnostic criteria. In addition you can have the same criteria and still have something else (mononucleosis, post concussion, chemo brain).

    So a really good physician of any kind will use the best of research available, but partner it with the best of their and others experience and then consider the patients values as they deliver care to the single patient that is in front of them. This is by definition Evidence Based Medicine. The term has been hijacked to mean only the research and only specific diagnostic criteria for specific diseases. In the case of a broken bone, appendicitis, stomach flu and sinus infections the research can be very accurate because the problems are not very complex. In the case of CFS/ME, Complex Regional Pain Syndromes, Chronic Pain or any Neurological based symptom disorder without conclusive testing the research is less exact and the experience of the clinician or those around them play a much greater role.

    In short, with diagnosis like CFS/ME there is far more gray than there is black and white. Anyone who tries to treat is a black and white will most likely fail and any patient who views it as black and white will only produce more anxiety.
     
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  2. Hip

    Hip Senior Member

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    There is a thread on central sensitization syndrome here.

    While central sensitization may be an aspect of ME/CFS pathophysiology (the research is still in its infancy, so we'll have to wait and see), it may not necessarily be the primary pathophysiological mechanism; it might be just some secondary phenomenon that is caused by other more primary pathophysiologies.
     
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  3. halcyon

    halcyon Senior Member

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    This remains an unscientific and unproven concept in ME and the dozens of other disorders that psychologizers are trying to ram into the same bin.
     
  4. Hip

    Hip Senior Member

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    Yes, although central sensitization may have started out as a scientific concept, the biopsychosocial school are trying to hijack it to make ME/CFS look as if it is an "all in the mind" psychogenic condition.
     
  5. Mohawk1995

    Mohawk1995 Senior Member

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    It is unfortunate that so many clinicians are looking to the Biopsychosocial Model to reinforce that many of these conditions are psychogenic and that cognitive thought can override them. This when the latest in Neuroscience is saying that the conscious resources of the brain at best comprise 20% of the the total resources and more likely comprise just 10%. The other 80-90% is subconscious or autonomic meaning the best we can hope for is to influence it with our "thinking". It is far too easy to just label something a psychogenic or conversion disorder when in all likelihood these difficult to treat conditions are multifaceted and very complex. As for central sensitization playing a role in CFS/ME, I am convinced it does especially after seeing my son go into anaphylaxis during routine allergy testing in the doctor's office. My thinking is that relatively normal input came in through the immune receptor system to the processing centers of the nervous system, it was "interpreted" as a much greater threat and the outflow from the nervous system produced the cascading response we know as anaphylaxis. Normal input leading to an "over reactive" response = central sensitization. If someone has a better explanation for this when all other tests are "normal" I am willing to hear it. This was definitely NOT psychogenic and no amount of will (even from a Navy Seal) could have reversed the process once the cascade started.

    Even if CFS/ME is proven to be primarily related centrally sensitization, it does not mean at all that it is psychogenic as that implies conscious thought (psyche) is the primarily cause. Only small minds would think that! Bad pun I know!
     
  6. ukxmrv

    ukxmrv Senior Member

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    Why not regards your son's Anaphlaxis as an immune system event?

    It seems unnecessarily complicated to try and explain it away by involving the nervous system.

    You appear to be seeing everything through one set of ideas and when something comes along like the Anaphlaxis you then need to find an explanation that fits into your idea of what is happening. There is no evidence for the nervous system being involved in your son's reaction to allergy testing.

    It's not scientific. It's anti-science as you have restricted yourself to one theory only and you have chosen a theory that there is simply no evidence for and that no serious medical researcher into ME shares.

    As a health-care professional and as a parent of a young person with ME you should be doing better than this. You could be. Trying getting up to date with the doctors who are researching the disease. There is a lot out there but you need to take your blinkers off first.
     
    Last edited: Feb 7, 2017
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  7. Valentijn

    Valentijn Senior Member

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    They haven't been running the right tests. Central sensitization is psychobabble BS with no grounding in reality, and it's completely nonsensical in the context of what is known about ME.
     
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  8. Valentijn

    Valentijn Senior Member

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    That would be quite a leap of faith, to categorize those conditions based on the rather flimsy theory of central sensitization. Especially when you consider that at least some of those symptoms are explicitly categorized as "stroke-like episodes", and are a hallmark feature of mitochondrial diseases which can also cause the same symptoms we get with ME.
     
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  9. Mohawk1995

    Mohawk1995 Senior Member

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    I can only speak from my personal experience of treating patients over 20 years as a physical therapist and also from the 7 year process of seeking treatment for and living with CFS/ME.

    As for Mitochondrial disorders, they appear to be highly linked to the Endocrine System with is controlled by the regulatory and executive functions of the subconscious brain and nervous system. I think we place too much importance on the importance of conscious brain and not nearly enough on the subconscious or autonomic functions of the nervous system.

    As a side note, in every disorder of the body the subconscious brain is involved and exerts a very powerful influence over it, especially in its mechanisms to protect us. When speaking with patients, I use the analogy of the Silverback Gorilla because our neuro-immune-protective mechanisms behave very much like him. Thus my avatar. :)

    I don't pretend to know it all and would be a fool to think that, but I have been exposed to some very smart people in the field of medicine and neuroscience as well as having many years of experience seeing patients up close and personal as a therapist. I have been humbled by both.
     
  10. Valentijn

    Valentijn Senior Member

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    No, mitochondrial diseases are the result of genetic mutations causing an inability to produce sufficient energy in the affected tissues.
     
  11. trishrhymes

    trishrhymes Senior Member

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    I find it hard to understand why you are so keen on the central sensitisation idea for ME/CFS, yet in another thread you make it clear that your son recovered by being treated with powerful antivirals.
     
  12. Mohawk1995

    Mohawk1995 Senior Member

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    See my other response in "New to PR but not to CFS/ME"
     
  13. Valentijn

    Valentijn Senior Member

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    I haven't seen anything in that thread which provides any support to your claims.
     
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  14. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Perhaps there is some autonomic ns dysfunction, but the mitochondrial issue is not regulated by the brain. It seems to be its own little beast metabolically probably for ancient evolutionary reasons. In addition to genetic factors there is also oxidation from dysfunctional metabolism which does add to the problem of mitochondrial dysfunction. It's possible this is the cascade effect? It is possible that dysfunctional metabolism may cause further problems with how the Autonomic ns interprets it's feedback and this could have a cascade effect of symptoms once it goes wrong (e.g. Cortisol regulation etc), however it seems unlikely that the brain would break down from being well regulated to poor on its own? We aren't normally born with this problem?

    Did I sit on the fence too much??
     
  15. Mohawk1995

    Mohawk1995 Senior Member

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    Hmmm.... I have never been "accused" of being single minded or having blinders on, but I will take that to thought to make sure I am not. I think the concept you are missing in what I am saying is that the nervous system is not the immune system or the digestive system or the respiratory system or the cardiovascular system or any of the other systems in the body. It does, however regulate ALL of the systems and provides feedback to make changes in these systems. If you can get up and walk across the room, you depend on your nervous system to sense the changes and send messages to the heart, lungs, blood vessels, muscles, various glands and yes even feedback loops to the nervous system itself. IF this did not occur, you couldn't do it. If the brain did not "oversee" the immune system (as well as all others), the immune system would not work. So while at first glance, my approach may seem over simplified, it is actually a much more complex way of looking at things than most people are willing to consider.

    As for research updates, I am well aware and well read on most of them. I am not a clinical researcher, nor is my expertise in the inner workings of the immune, endocrine, or other systems involved in CFS/ME. I have personally gone from a more segmental view of the body to a more holistic. One of the questions I have contemplated is this: What controls and monitors the neuro-inflamatory response, the release of B Cells in the body, the ability of the endocrine system to activate mitochondria, the release of other hormones and chemical substances in the body and basically everything that happens in our body? ...The nervous system. Ultimately that is why we are not "dead" until we are "brain dead" and why feeling something as apparently simple as feeling pain in your ankle following a sprain would not occur unless the nervous system (specifically the processing centers in the brain) were not connected to that ankle.

    Lastly I take not offense at questioning my parenting. We have from the onset of our journey with our children always questioned whether or not we are doing the right thing. None more so than when our son was suffering.
     
  16. halcyon

    halcyon Senior Member

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    I think something like this is much more likely to be mediated peripherally, by mast cells and other resident immune cells.

    Not running the right tests.

    I'll quote fan favorite Brian Walitt on this one:
    Translation: central sensitivity syndrome is a false illness belief found in the minds of clinicians.
     
  17. Valentijn

    Valentijn Senior Member

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    Aside from the complete lack of any actual support for a sensitization theory, there are practical issues. First of all, it allows peripheral symptoms to be ignored. This means that pain, muscle exhaustion, etc, can be treated as completely irrelevant. They aren't really happening, it just feels like they are.

    And of course, the treatment proposed for sensitization by the usual quacks is more CBT and GET. Think the right thoughts and cure the body! I can't believe anyone would seriously believe any of that bunk.
     
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  18. Mohawk1995

    Mohawk1995 Senior Member

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    We agree more than you know. 80-90% of our brain is autonomic. You can't control it. You can't think your way out of it. CBT or GET at best will only influence it and I have seen many patients fail with that approach. The people who have it right on Central Sensitization are much more focused on Neuromodulation through Graded Motor Imagery, Virtual Reality, Education on how it works, Electrical Stimulus and yes recovering function.

    Because I am a firm believer in Central Sensitization does not negate pain, muscle exhaustion and other peripheral symptoms are not peripherally caused, nor does it state they always are but those are as real as anything else I can think of. Especially after seeing all of them impact our son for over 6 years.
     
  19. Hip

    Hip Senior Member

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    While we need to be careful about the unscrupulous influences of the disability insurance industry (who are always trying to get out of making disability payments to ME/CFS patients, by trying to make ME/CFS look like it's "all in the mind"), central sensitization, when viewed as a physical organic dysfunction of the brain or spine, is a reasonable concept and research area.

    This article article points out an ambiguity in the usage of the term central sensitization:
    So the term "central sensitization" may refer to the general concept of a pain signal amplification in the central nervous system (CNS), or may refer to a specific NMDA receptor activation mechanism of such pain signal amplification.


    In terms of this NMDA receptor activation form of central sensitization, the article says:
    The idea that raised glutamate levels exist in ME/CFS and fibromyalgia is nothing contentious. Years ago, Dr Cheney proposed that in ME/CFS, neurons are oversensitive to firing because their excitatory NMDA receptors are more activated than their relaxing GABA receptors.

    Remember: the state of excitation of a neuron (the neuron's amplification setting) is determined by NMDA receptor activation (increases the neuron's amplification) and GABA receptor activation (decreases the neuron's amplification).

    The NMDA and GABA receptors are like two side of a seesaw: if you activate NMDA, it increases neuronal amplification, and if you activate GABA, it decreases neuronal amplification.

    When a neuron is set to a high state of excitation (amplification), that means the neuron will amplify its input signals by a large amount (analogous to setting your Hi-Fi music system to a high volume), and so will more easily fire. When a neuron is set to a low state of excitation (amplification), that means the neuron will amplify its input signals by a small amount (analogous to setting your music system to a low volume), and so will less easily fire.

    The decrease in neuronal amplification that is produced by activating the GABA receptors may well explain why benzodiazepines are effective for treating pain in fibromyalgia, and supports the idea of central sensitization.



    One thing to point out though: lots of ME/CFS patients do not experience pain, and even the patients that do suffer from pain, pain is only one of a set of many other disparate ME/CFS symptoms, affecting many different areas of the body. So the concept of central sensitization, even if proven to be correct, would appear to be restricted to explaining the pain symptom in ME/CFS and fibromyalgia, but does not apply to any other symptoms.

    Having said that, high glutamate levels may be involved in other ME/CFS symptoms; but high glutamate is distinct from central sensitization: the term central sensitization only covers the effects of high glutamate / NMDA receptor activation on pain sensation, not the effect of high glutamate / NMDA receptor activation on other symptoms or other aspects of physiology.

    So as an overarching explanation of ME/CFS, central sensitization is a non-starter.
     
    Last edited: Feb 7, 2017
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  20. Hip

    Hip Senior Member

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    I agree, there most likely will be some peripheral dysfunction that instigates a peripheral pain signal. It's then conceivable that some central sensitization phenomenon might over-amplify that pain signal, which further contributes to the pain.

    But I cannot imagine how central sensitization on its own would give rise to pain, because if central sensitization is a signal amplification process, you need to have some peripheral pain signal to start with.

    By analogy: no matter how high you turn up the volume of your music system, you are still not going to get any Led Zeppelin coming out, unless you actually play a CD, which is analogous to the peripheral pain signal.
     
    Last edited: Feb 7, 2017
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