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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An autoimmune basis for chronic neuropathic pain

Discussion in 'Other Health News and Research' started by Marco, Jul 1, 2014.

  1. Marco

    Marco Grrrrrrr!

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    This is a recording of last week's webinar on the possible involvement of non-destructive autoantibodies in some patients with the multisystem/multisymptom condition complex regional pain syndrome.


    Just over one hour for anyone interested :

    http://www.painresearchforum.org/forums/webinar/41344-webinar-autoimmune-causes-chronic-pain
     
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  2. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    recently i've had very severe emergence and spread of freezing numbness in my feet, very unpleasant strangely painful as well, at times feels like red hot nails jammed into the flesh and over all...can't explain it, though freezing numb it's damn...unpleasant, weird sensation.
    part of that has spread up to my knees and they are now like jelly, wobbly

    and it's starting in my hands now as well.
    guessing neuropathy, but it's so quick, around December last I started getting sudden hot flashes in hands and feet
    then 2+ months ago it started into extreme cold/numbness on outer edge of my feet and spread inwards and now upwards
    and have had serious pain I muscles of upper body all time for years, and legs when I walk.

    so this research is interesting
     
  3. Marco

    Marco Grrrrrrr!

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    That stocking and glove pattern is certainly consistent with peripheral neuropathy from what I've read and with around 50% of fibro patients now showing up with objective evidence of peripheral neuropathy perhaps you could arrange to be tested. You may just have a treatable condition.

    What I found interesting in that presentation was that central symptoms (he only mentioned mood but CRPS central symptoms also include fatigue, cognitive and autonomic dysfunction) resolved when the peripheral pain resolved (not really surprising if pain was driving the central symptoms). But from his clinical experience the presenter had observed mood issues resolving in patients treated with plasma transfer before the pain did.
     
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  4. anciendaze

    anciendaze Senior Member

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    I believe many patients here experience that stocking pattern neuropathy, in the form of "burning feet", or problems with cold hands. Part of this may be a consequence of reduced peripheral blood flow while upright due to autonomic dysfunction. Damage to the autonomic nervous system commonly causes a shift toward increased activation of the sympathetic nervous system, which has all kinds of consequences, particularly impaired sleep and orthostatic intolerance.

    While many characteristics suggest autoimmune disease, I want to caution people that current management of such illnesses is far from satisfactory. The alternative of chronic infection by pathogens we don't recognize as particularly harmful -- unless they appear in a special context -- continues to interest me. Just how obvious a pathogen can be, and still be overlooked, shows up in my recent posts on borrelia miyamotoi and babesia microti.

    While b. miyamotoi is a microscopic spirochete bacterium, b. microti is an actual multicelled parasite. At the same scale we can be infected by a wide range of yeasts and fungi, some of which produce powerful toxins against competitor species. At a smaller scale we are essentially all infected with multiple herpes or papilloma viruses which only rarely cause cancer or a fatal encephalitis. Even within the cell nucleus we carry many copies of HERVs which infected our ancestors. A few of these show disturbing evidence of recent activity. In a variety of disease states we find expression of HERVs, but most of the time these do not produce replication-competent virions. If their genes are passed through the germ line, they don't need to be highly infective. No law of nature requires them to put all their genes in a single convenient package for us to find. Our cell nuclei are convenient enough for viruses.

    Yes, we may very well be experiencing problems due to misdirected immune response. We may also have infectious agents which need treatment. If immune response has been (naturally) throttled back to limit damage from autoimmunity we may also have recognizable overgrowth of other microbes. It may be my own idée fixe, but this is the pattern I see in a number of recognized autoimmune disorders.

    Diagnosis of autoimmune disorders takes us into another mind-warping tour of the history of medical practice. At one time, (after the initial strong rejection of the concept) it was hard to find any autoantibodies, and there were efforts to increase sensitivity of tests. Later, it was decided that too many people were being diagnosed with autoimmune diseases. The result was that the push for sensitive tests ended, and thresholds for levels characteristic of autoimmune disease were raised to match clinical signs like the visible rash in SLE. Laboratory evidence was chosen and interpreted in a way that supported previous clinical judgment. By-and-large patients with MS, RA and SLE remained sick. Each new clinical entity became a battleground of opposing medical opinions. Objective evidence had less effect on practice than commonly believed.
     
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  5. Marco

    Marco Grrrrrrr!

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    @anciendaze

    While not directly addressing your main point, the presentation does end with the observation that even if autoimmunity is confirmed as causal in a proportion of CRPS cases (and despite the very high pain levels associated with the condition and current lack of effective treatments) there would still need to extensive 'dialogue' between clinicians and patients as to the desirability of going down this treatment route.

    I expect the same caveats would apply to ME/CFS in similar circumstances if not even more so.
     
  6. anciendaze

    anciendaze Senior Member

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    @Marco,

    Just as a wild idea that probably will not be tested for some time to come, I wonder what would happen if adoptive immune therapy to limit viral loads by endemic viruses were used on ME/CFS patients. Limited efforts to reduce viral load with antivirals have already shown promise for some patients. Here's a recent breakthrough in that area. We have already seen one case in which secondary progressive MS was successfully treated with a similar adoptive immune therapy. That illness is normally a death sentence.

    Our problem is that, according to authorities, we do not have a "serious life-threatening disease" which warrants such drastic measures. They prefer to give us antidepressants and try to talk us out of saying we are sick.
     
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  7. NK17

    NK17 Senior Member

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    I'd like to bring my personal experience here:
    I've been dx with fibromyalgia for a number of years now, although I've been experiencing fibro type aches and pains since my early teens.

    I've had a horrid case of IM (Infectious Mononucleosis) at 14, from which I've probably never recovered.

    After the IM as I was not getting well I was treated with Abx for 6 months for Toxoplasma Gondii very high titers.

    Next came a glorious case of chickenpox (Varicella) at 16.

    I finally was dx by 3 ME/CFS doctors (Kogelnik, Chia and Carlo-Stella) by CCC and ICC with a classic case of ME (low NK cells function, high antibodies titers to all herpes viruses and some enteroviruses, white matter lesions, ANS dysfunction) you name it, 3 decades after the IM!

    This year a young neurologist at Ucla decided to see if my fibromyalgia was due to small fiber polyneuropathy and ordered a punch skin biopsy. The results was negative.

    Needless to say that I was really hoping to find a cause, so that the doctor might be able to try some treatment and abate the physical suffering.

    Nothing, nada de nada, I'm back to square one and the pathology lab bill I've just discovered is only partially covered by my insurance!

    I tend to agree with anciendaze, modern medicine is failing PWME because of its basic, simplistic and narrow view of diseases, subclinical chronic infections and disregards of HERVs.
     
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  8. Marco

    Marco Grrrrrrr!

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    @NK17

    Maybe but we're a long way from a more sophisticated model and in the meantime the skin punch biopsy may have been positive and pointed to a common cause of SFPN like one of the diabetes spectrum disorders that could have been treated? Admittedly even when there's objective evidence of small fibre neuropathy a fair number of cases end up labelled as 'idiopathic'.
     
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  9. anciendaze

    anciendaze Senior Member

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    @Marco

    Guide to medical terminology:

    "Idiopathic" is preferred in medicine to "I have no idea what happened."

    Conversely, the term "iatrogenic" is severely deprecated because it casts doubt on the profession as a whole. Privately, I've had doctors tell me the bottom 10% of their graduating class (still to be addressed as "doctor") "were not qualified to be tree surgeons". You can compare this estimate with rates of professional disciplinary actions to decide whether the profession is more concerned with protecting itself or patients. Honesty is subject to strong negative selection pressure from malpractice suits.

    One of my long-term ambitions (given excess energy) is to start a newsletter called "the idiopathic morbidity and mortality weekly", which would deal exclusively with cases where doctors are treating things about which they are clueless. This would include useful articles for professionals on subjects like "Fish-eyed stare for stopping logorrhea" and the well-known fact that "Purple, foul-tasting, expensive pills work best."

    Added: I can't stop here. Another topic for the newsletter: "Diagnosis as a non-contact sport". Any medical journal needs a Latin motto. I recommend Stercus Accidit.
     
    Last edited: Jul 3, 2014
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  10. Marco

    Marco Grrrrrrr!

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    Go for it! Sounds entertaining.
     

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