A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London ...
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Central Sensitization Syndrome

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

  1. halcyon

    halcyon Senior Member

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    As discussed in several threads started recently by our Canadian comrades, central sensitization syndrome appears to be an emerging concept that is already being used as a model to attempt to explain and treat our CFS symptoms. PD White even published a paper on it earlier this year, building a bridge between functional somatic syndromes (which he believes CFS is) and CSS.

    I was surprised to learn (I don't know why anything surprises me anymore) that the CSS concept has made its way to the USA as well. A user on the /r/cfs subreddit mentioned that they received a diagnosis of CSS from the Mayo Clinic. Mayo has produced this helpful video to explain the concept:


    While CFS is not mentioned by name, he makes reference to patients with the "push crash" cycle, and "chronic fatigue" is listed at the end as something that they treat under this model, as well as FM, MCS, et cetera. While he doesn't go into depth, the description of their treatment plan at 11:43 in the video sounds basically like CBT/GET to me.
     
  2. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Disgusting @ 11:43.
     
  3. Gingergrrl

    Gingergrrl Senior Member

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    I skimmed through the video, and couldn't bear to listen to it all, but isn't "central sensitization syndrome" the same term that Dr. Goldstein used in his books like "Betrayal by the Brain" etc, or am I totally wrong about this? Did they take his term and make it into something else or is this also what he meant by it? I find this confusing and wondering if anyone else knows?
     
  4. halcyon

    halcyon Senior Member

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    From what I understand, the CSS concept comes from an attempt to apply central pain sensitization concepts (for which there is research for) to other symptoms (for which there is little or no research for.)
     
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  5. Kati

    Kati Patient in training

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    According to Arseneau (and I hate to quote him)POTS is included in the different conditions which are supposedly caused by CSS. They seem to target all of the unexplained diseases which can be co-morbid with ME and FM. Interstitial cystitis, and even painful periods.
     
    Last edited: Dec 21, 2015
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  6. halcyon

    halcyon Senior Member

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    Basically any symptom or syndrome for which a physical cause can not be seen via conventional medical diagnostic techniques will fall under this CSS classification as far as I can tell.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    Warning rant ahead...

    Forgive me to all the lovely men on PR but how would Arseneau and all these male doctors have a clue what painful periods feel like? If they had to endure the 30 years of cramps that I have, they would be crying like a baby.

    And again I know this will be cruel but the doctor in the Mayo video who was linking all these illnesses to deconditioning was a bit... deconditioned... himself :D.

    I cannot fathom how POTS in which my heart rate was jumping to 160 or 170 because I stood up from a chair is psychological. And if he said mast cell diseases are psychological (I don't know b/c I fast forwarded through his monologue), I will scream b/c there are proven tests for histamine, tryptase, prostaglandins, etc, but those are probably not good enough for the Mayo Clinic.
     
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  8. halcyon

    halcyon Senior Member

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    That's the beauty of this CSS model, and he states this in the video, it's not psychological at all. Patients won't hate to receive this diagnosis. The blame is all in the "brain" and not the "mind" this time. Funny then that the treatment for CSS is identical to the treatment proposed in the biopsychosocial model.
     
  9. Kati

    Kati Patient in training

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    I keep on looking for reasons against CSS as it applies to ME (I am not researching other conditions as much)

    Here are a few:
    The risk of lymphoma is increased in patients with ME, up to 4 folds (I am looking for the reference if you have it)
    Patients have improved with anti-virals and immune modulators (Valcyte, Rituximab)
    Surely the gene expression paper after exercise is not all in our heads, or the scientist's heads?

    This theory explains the need to NOT research these conditions and to research rehabilitation, CBT and GET. Surely, someone benefits, here? Rehab specialists, insurance company, psychiatrists, etc.
     
    Last edited: Dec 21, 2015
  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Perhaps ethical?

    Has CSS been studied in the context of ME? If not, how can he ethically use it as a 'treatment' for ME? (I'm tired, so it may be obvious and I'm missing it). Especially in light of the growing bio evidence you point out.
     
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  11. Snow Leopard

    Snow Leopard Hibernating

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    CSS is just a hypothesis. It is far to vague/nonspecific to be called a theory. (anyone who calls it a theory is doing so in a pseudo-scientific way).

    I'm not suggesting it isn't possible, but rather it is one of multiple possibilities and we need a lot more research until we agree it it's a real thing.
     
  12. Dufresne

    Dufresne almost there...

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    I'm not at all bothered by the concept, as they're not suggesting it's a psychological condition. True the therapy here focuses on psychological interventions but that doesn't mean it's a psychosomatic condition, just that the psychological is a component of it. Not such a big surprise, it is the brain after all.

    Dr Edwards suggests a form of ME that has the brain overreacting to substances is deems noxious; and this is basically my experience. The thing I'd like to stress is this is perpetuated by toxins and infections in many cases and is probably not just going to resolve itself with the psychological approach. And yes, I think it fits nicely with Goldstein's ideas, at least what I understand of them.
     
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  13. Forbin

    Forbin Senior Member

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  14. Kati

    Kati Patient in training

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    Then this hypothesis is given much grandeur in my neck of wood. So much grandeur in fact that it is thpaught in med school amd taken for granted.
     
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  15. Gingergrrl

    Gingergrrl Senior Member

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    This is what I thought, that Goldstein uses this term in his books but in quite a different way as Mayo Clinic is using it and his treatments involved medications vs. psychological interventions. I do not even know if the modern day people using this term realize that it was used before in a different context (unless I am still totally wrong here?)
     
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  16. Hip

    Hip Senior Member

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    A good introductory article by Adrienne Dellwo on central sensitivity syndrome (CSS) as it applies to ME/CFS and fibromyalgia is here: Central Sensitivity Syndromes

    Some excerpts from this article:

    This explains how Prof Muhammad Yunus first conceived of central sensitivity syndrome:

    Central sensitization is just one category of a more general concept known as sensitization. Eric Kandel is the father of sensitization research, and studied its neural basis in the 1960s and 1970s.
     
    Last edited: Dec 23, 2015
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  17. halcyon

    halcyon Senior Member

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    While personally I'm bothered by the concept, I'm more bothered by the fact that at least two clinics are providing treatment for a condition that is nothing more than a concept at this point. This is quackery being performed by mainstream medical providers.
     
  18. bertiedog

    bertiedog Senior Member

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    I think it is generally accepted that this is the syndrome behind Fibromyalgia but I don't know whether it is correct thinking though.

    Pam
     
  19. Asa

    Asa Senior Member

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    Am not up to reading all the thread comments, so forgive if this info is a repeat. That said, I also don't remember the details, but CSS came up on occupycfs.com during the P2P process. I believe Clauw was one of the "problem" speakers, and he had been cited as referring to CFS as what he termed "fibromyalgianess". And he may (??) have been part of the previous/somewhat simultaneous P2P process on opioids/chronic pain, where CSS is discussed. I don't believe CFS was mentioned in this text, but outside the text, peope such as Clauw had been including CFS in the "fibromyalgianess"/ CSS model.

    I believe at one point, Jennie reported that Clauw had claimed that he could predict who would develop this fibromyalgianess/CSS. His "prediction" factors were much of the psychosocial whathaveyou we're all too familiar with, and many people will recognize of course that such "predictors" don't describe their life experience at all!

    Nonetheless and just as an additional fyi, the CSS concept may have played a roll in the controversial IOM gulf war reports too.

    See comments here by Ren/Jennie: http://www.occupycfs.com/2014/12/19/p2p-report-first-read/ and/or search occupycfs for more info on how this term (central sensitiz/sation ? syndrome) appeared throughout the past years' processes in the US. Sorry I don't recall enough (and am not currently able) to provide more concise info. :)


    CSS 1.PNG CSS 2.PNG CSS 3.PNG
     
    Last edited: Dec 22, 2015
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  20. Old Bones

    Old Bones Senior Member

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    Not to mention, that at least some relief for symptoms of mast cell diseases can be achieved by eliminating foods that contain and/or liberate histamine or other biogenic amines. Of course, there's probably someone out there mislabelling our attempts to manage symptoms through diet as maladaptive, and proof of the psychiatric nature of our illness. After all, who in their right mind would chose to eliminate many of their favourite foods from their diet???
     
    Last edited: Dec 22, 2015
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