The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Central Sensitization Syndrome

Discussion in 'General ME/CFS Discussion' started by halcyon, Dec 21, 2015.

  1. Asa

    Asa Senior Member

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    Can't bring myself to watch/listen to video at this time, but noticed after the time quote above, the speaker says patients should attend a pain clinic Mon-Fri 8-4.30!
     
  2. Asa

    Asa Senior Member

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    "It may be the most exciting concept in neuroscience that most people have never heard of. Eric Kandel’s Nobel prize in 2000 on ‘neuronal learning’ in the brain laid the basis for it. It’s become a possible model for Multiple Chemical Sensitivity (MCS) and Post Traumatic Stress Disorder (PTSD). Dr Leonard Jason believes it may explain Chronic Fatigue Syndrome (ME/CFS) as well..."

    http://www.cortjohnson.org/blog/201...ain-hypersensitives-chronic-fatigue-syndrome/
     
    Hip likes this.
  3. jimells

    jimells Senior Member

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    Yes, a "non-psychological" illness that can only be "cured" with "psychological" treatments and the ever-ready exhortation to "exercise more" and "reduce stress". :bang-head:
     
  4. Hip

    Hip Senior Member

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    Somatoform psychologists will always try their best to explain a physiological condition in psychological terms.

    After all, Wessely agrees that ME/CFS can be triggered by viral infection... he just claims that after the acute viral illness causing ME/CFS has disappeared, all the symptoms of ME/CFS remain because the patient has not updated his belief system, and thus still thinks he is ill. Then by some sort of magical thinking, Wessely and Co rather bizarrely claim that it is only your belief system that creates all your symptoms and keeps you ill.

    In this way, Wessely and Co have completely twisted and distorted a physiological-caused condition like ME/CFS into a psychological-caused one, using a bizarre theoretical model which amounts to nothing more than magical thinking. Amazing that that a purportedly science-based publication like the DSM-5 can have a chapter on somatoform disorders, which in essence are no more that magical thinking!



    So no doubt the somatoform psychologists (and their disability insurance industry paymasters) will be twisting the physiology of central sensitization in some contorted way to try to make it fit their magical thinking somatoform views on disease etiology.

    But that is not a valid reason to criticize central sensitization.

    If we are going to critically appraise central sensitization, it needs to be done by examining central sensitization in physiological terms, and working out if this mechanism might be able to biochemically explain ME/CFS symptoms (and the symptoms other diseases central sensitization purports to explain).

    I have not looked into central sensitization much, but from what I can see so far, it seems that central sensitization might conceivably play a role in ME/CFS and other diseases grouped under CSS; but I doubt if central sensitization is the whole of the disease.

    And even if central sensitization is present in ME/CFS, we still need to ask what causes it. That is, what dysfunctional mechanism is behind central sensitization. Causes for central sensitization might include neuroinflammation, autoimmunity, or infection.
     
    Last edited: Dec 23, 2015
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  5. Valentijn

    Valentijn Senior Member

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    You don't need to disprove CSS. It's blatant quackery on par with using positive thinking to cure cancer.
     
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  6. Hip

    Hip Senior Member

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    Why do you say central sensitization is quackery? As a field it seems underdeveloped, but that is not in itself quackery.
     
    Wayne likes this.
  7. Kati

    Kati Patient in training

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    Don't know what to tell you. Patients currently gets diagnosed with this in BC. Our options are
    1) don't access care
    2) get out of country care
    3) fight back by providing evidence, but it may not be considered because we are mere patients and they are the gods.
     
    Effi likes this.
  8. Kati

    Kati Patient in training

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    It does not requires science in order to diagnose this. All you need is pain and a collection of symptoms showing ssensitivity. With that, you are all set for CBT and GET. Further, all future symptoms you may report will be explained by CSS and does not warrant investigation.

    See the slippery slope?
     
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  9. adreno

    adreno PR activist

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    There might be something to this idea of heightened sensitivity, however I see it as an outcome, and not a cause. It is most certainly not caused by psychological factors. I'm also not sure it's necessarily central, as I think increased sensitivity can be observed in the periphery as well.
     
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  10. Hip

    Hip Senior Member

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    I do.

    But how is that any different to the current status quo, where at present a patient may be diagnosed with a functional disorder or a somatoform disorder, and also directed towards CBT and GET, and also have all future symptoms explained by this diagnosis?

    As I mentioned, the somatoform psychologists will distort anything, even a viral infection, to make it look psychologically-caused.
     
  11. Old Bones

    Old Bones Senior Member

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    I agree -- the heightened sensitivity some of us experience is a result, and not a cause, of the illness. I had already lived in my townhouse for eight years when I became ill, and considered the insulation between units adequate to screen out the typical sounds of day-to-day living from adjoining units. Within a few months post onset, I was shocked at being able to hear the neighbour snoring, opening the drawer in his bedside table, and taking a bath, for example. The sounds of splashing, and of his butt squeaking against the bottom of the bathtub, felt particularly intrusive; not to mention the "stream" hitting the water in his toilet bowl! My sense of smell became similarly acute. Fortunately, these disturbances have reduced over the years, despite my being no less functionally-impaired. But when they start to return, I know I need to do a better job of pacing.
     
  12. Effi

    Effi Senior Member

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    My experience is, you don't even need pain. I don't have pain but still I have had doctors tell me my illness is CSS, and I should take SSRI's to fix my overactive pain signaling system. The fact that I almost never experience pain didn't seem to matter at all. They told me I'm in pain so I'm in pain. 'Now please leave my office, you're a nuisance and I quite frankly just couldn't give a ****.'
     
  13. Hip

    Hip Senior Member

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    That is something that would concern me: that doctors start using CSS as a convenient diagnosis and label for a whole array of diseases — a label that gives the impression that the diseases are understood, when in reality, central sensitization is still a speculative and very underdeveloped hypothesis.

    As an area of research, central sensitization might bear fruit; but it is far to early to start definitively labeling diseases like IBS and ME/CFS as central sensitivity syndromes.
     
    Last edited: Dec 22, 2015
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  14. Kati

    Kati Patient in training

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    I am sorry, @Effi it's not right. :( :ill::ill::aghhh:
     
  15. Kati

    Kati Patient in training

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    This is what i am saying, it's happening now in British Columbia.
     
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  16. halcyon

    halcyon Senior Member

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    Yes, that was rich. After acknowledging that we "push crash", we should attend a full time workshop for weeks. If we were able to do this we wouldn't need the "treatment" in the first place.
     
  17. Effi

    Effi Senior Member

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    this is already happening! It doesn't matter in the least what symptoms you have or don't have. Every MUS is now being labeled CSS. The patient gets an explanation about 'what is going wrong with your pain system', patient believes the doctor because he's supposed to be the one in the know. Patient then follows the treatment (SSRI, exercise, CBT - sound familiar?) which doesn't turn out to work at all (or worst case scenario makes patient sicker) because the hypothesis is nothing more than a hypothesis about a mechanism that isn't yet understood. The way they are using this hypothesis as if it's an absolute truth is a real problem that is already negatively affecting patients' lives in various countries around the world.
     
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  18. halcyon

    halcyon Senior Member

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    I think what @Valentijn is trying to say is that this should be attacked from the angle that there is literally no scientific evidence to back up this theory. It's not like trying to fight PACE where there is "evidence", there is no evidence here and we should only have to point this fact out.
     
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  19. halcyon

    halcyon Senior Member

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    You should be concerned now because this is already happening, which was why I started the thread. I'm trying to get in touch with the patient on reddit that claimed to receive this diagnosis from Mayo to get more detail, but I have to imagine that others going to Mayo for ME or CFS symptoms might end up with a diagnosis of CSS.
     
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  20. Effi

    Effi Senior Member

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    I totally agree, I just don't think they'll be impressed with this argument. At least not the doctors I've tried to argue with. In their mind this theory is scientifically sound. It just becomes a question of authority of doctor vs. patient. I keep thinking of a way to thoroughly debunk this, but you know how these people love cherry picking...
     
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