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ME - Syndrome or Disease?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by nanonug, May 6, 2012.

  1. xchocoholic

    xchocoholic Senior Member

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    Hi mellster,

    I totally agree with coming to these forums for ideas. We can learn a lot from each other and probably more than we can learn from medical professionals at this point. We have first hand access to what works or doesn't work on us. They can only read studies ...

    I still see traditional doctors but only for what I know they know if you know what I mean ? lol ... I'm following my integrative doctors lead at this point and looking for causes.

    We know that I have leaky gut syndrome and unfortunately whatever damage may have occured while I was still eating gluten after getting ataxia, white leasions and myoclonus for 16 years. That's gotta leave a mark ...

    At this point, I still have a diagnosis of CFS / ME due to OI, PEM and an upregulated immune system. I can't relate to not falling into the ME category from day one but I'm happy to hear others can.

    Hi Enid,

    sorry to hear that you can relate. Hopefully, we'll get to the bottom of all this someday .. hugs ...

    tc ... x
     
  2. SOC

    SOC Senior Member

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    Err.... what about Down Syndrome, or Severe Acute Respiratory Syndrome (SARS), or Acute Radiation Syndrome? The essential aetiology of these, and other, syndromes is well known.

    You'd think a doctor could figure that one out, although many don't apparently.
     
  3. Ember

    Ember Senior Member

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    I relate easily to understanding ME as a form of CFS, just as migraine is a form of headache and mycoplasma pneumonia is a form of pneumonia. According to my experience, PENE identifies a cardinal feature of the disease, characterizing it well as neuroimmune exhaustion. (So too does Laura Hillenbrand's quotation, Fatigue is what we experience, but it is what a match is to an atomic bomb.)

    Gordon Broderick writes, Whether patients with less severe conditions represent a continuum, faulty diagnosis or different disease entities can only be determined by future studies. Concerning the underlying pathophysiology of ME, he adds, There is simply too much evidence of pathophysiologic neurological and immune dysregulation, immune activation and an imbalance between inflammatory and anti-inflammatory mediators to be ignored [3256] (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02499.x/full).
     
  4. nanonug

    nanonug Senior Member

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    Why neuroimmune? Why not just immune?
     
  5. Ember

    Ember Senior Member

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    The ME-ICC cites Jason et al. in comparing CFS with ME:

    Jason et al. also stress the neurological nature of the disease. Here are some conclusions from their article, Comparing the Fukuda et al. criteria and the Canadian case definition for chronic fatigue syndrome:

     
  6. hixxy

    hixxy Woof woof

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    Are you aware that OI isn't a requirement?

    Only one symptom from that list is required. Not necessarily OI or POTS.

    I have actually just reread the ICC and the criteria is actually really wide open. Almost the only absolutely required specific symptom is PENE.

    All the rest of the categories are so incredibly variable and open that they could provide so many incredibly variable presentations of this disease.
     
  7. PhoenixDown

    PhoenixDown Senior Member

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    Which ever it is disease or syndrome, CFS or ME, these current labels are doing more harm than good. The labels are used as alternative words for behavioural problems, not real suffering, or imagined pain, or greatly exaggerated pain/fatigue.

    The real world usage of these labels are destroying patient's lives and causing permanent damage through neglect and lack of appropriate treatment, even testing is withheld based on what these labels mean to the average primary care practitioner.

    Change is needed as soon as possible, even without any medical break through or expensive research, a simple change in law and regulation could have a crucial impact for the millions suffering with these illnesses.

    What these labels ultimately define is disrespect. Disrespect from family, friends, co-workers, doctors, social workers, and society at large. That's what really needs to change. How many cancer patients lose all their friends because the friends didn't understand it or don't believe in it? Can you objectively prove a cancer patient is in pain any differently than a CFS, ME, or Fibromyalgia patient? The answer is no, and yet they are believed because their label is respected.

    There's no way you can turn the tides on these labels in a short period of time, I believe it will take decades and for that reason new labels should created instead and their seriousness backed by law.
     
  8. hixxy

    hixxy Woof woof

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    It's a nice dream (or maybe even fantasy) ... The situation is even worse if you throw MCS on top of it. What a laughing stock you become for the doctors then. The mask attached to your face when you visit the doctor is enough to destroy all hope of being taken seriously.
     

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