Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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health providers - Something I just dont get!!

Discussion in 'General ME/CFS Discussion' started by Large Donner, Sep 27, 2015.

  1. Large Donner

    Large Donner Senior Member

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    This just makes no sense to me, the below information is taken directly from the NHS on Encephalitis and it goes into some detail about viral onset, infectious and post infectious states, autoimmune issues, fatigue, joint pain, confusion drowsiness etc etc and how its can cause long term damage or be fatal etc. It even talks about chronic states where "inflammation develops slowly over many months and can be due to a condition such as HIV; in some cases, there's no obvious cause".

    It talks about tick borne onsets also.

    Yet mention ME which seems to describe pretty much the same thing as the below content does and its "controversial" and should be treated with CBT and GET.

    Why does the NHS pretend that all of the above when under an ME or CFS banner is so "mysterious" and then go as far to allow NICE etc to treat it like a psychological issue? How can they possibly get away with pretending all of those issues when taken down in a patient history have no significance.

    Isn't this Encephalitis issue the easiest challenge to the "evidence based" issues put down as blocks for accepting ME?

    If there's Encephalitis its a precedent in medicine and science isn't it for accepting ME is "encephalitis" or at least that there's no "mystery" surrounding accepting such a mechanism for ME?

    http://www.nhs.uk/Conditions/Encephalitis/Pages/Introduction.aspx

     
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  2. Effi

    Effi Senior Member

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    @Large Donner There's a difference between what we call M.Encephalitis, and something called acute encephalitis. (Btw, a very old name for ME used to be benign encephalitis, benign meaning non fatal.) The acute version can be quickly fatal, instantly put you in a wheelchair, etc. There's sometimes people from encephalitis advocacy groups who protest against us using the term ME cause they say that's not what we have and we're misusing 'their' term. I don't know enough about it to really explain it in depth, but my doctor says the same thing, that encephalitis is commonly used for a very acute and fatal illness, and that the term ME isn't largely accepted for that reason. (I don't agree with this, just saying what I've heard.) It's just so confusing.
     
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Also a chronic meningitis form called mollaret's meningitis , which is caused by herpes type1 and 2 as well as vzv. They say its subclinical with episodes of reactivation etc these people function at the same level as cfsme , may even be a subset of cfsme. Not many drs would even test for it or know how to test for it.

    look up natutal killer cell defiency disease, how is
    It so different from the low nk function of many mecfsers. Treatment is antivirals to help prevent herpes viruses ebv, cmv etc from reactivation.

    So many of these conditions arent much different to cfsme or probably subset of, but i think one has to be lucky enough to find a dr who can confidently diagnoses these conditions. So many patients are never really given a diagnosis,maybe drs dont want to label a patient out of fear of being wrong or something ? ??
     
  4. Living Dead

    Living Dead Senior Member

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  5. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I had a psychiatrist the other day try to tell me that m.e. diagnosis was 'controversial' - I interrupted him and corrected him:

    What's controversial is that the medical system and (some) doctors are ignoring the biological evidence and continue to harm patients.

    He was slightly taken aback that I had re-framed the 'issue' and putting the onus on the medical system to justify their harmful behaviour.
     
  6. Effi

    Effi Senior Member

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  7. barbc56

    barbc56 Senior Member

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    Effi likes this.
  8. minkeygirl

    minkeygirl But I Look So Good.

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    When I first got sick 20 plus years ago, a doc I was seeing used the term "static encephalopathy" on disability forms. I asked him what it meant. It meant I got my disability, that's what it meant.
     
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  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Right, encaphalitis is an acute, severe illness. It would come with very severe symptoms. Not simply, I got the flu and I never got better. It would be, I had the flu (or some other infection) and I had these severe symptoms, and I never got better.

    But there are some of us who did have acute encephalitis. However we're still stuck with CFS, the oh-so-mysterious disease that most do not want to treat or research.
     
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  10. Large Donner

    Large Donner Senior Member

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    Bingo!!

    That's the point was trying to make when I posted the thread. Take out the naming issues, poor history taking by doctors and also remember alot of "diagnosis" are made subjectively often depending on which tests where ordered, the attitude of the original diagnosing physician, our lack of understanding about instant onset or slow onset, etc etc.

    To me its less about "....itis" "....opothy myelitis" etc etc its about people getting ill from viral bacterial onsets and then staying ill for a long time with neurological symptoms, pain, and "fatigue".

    Alongside this, tic bites, autoimmune issues, etc etc being well known and long since accepted to produce such symptoms on a varying spectrum is the whole point in the issue. Also what they can do to the central nervous symptom be it the brain or the spinal cord.

    I understand all the defining issues around ME and what it should stand for but isn't that a separate issue from the precedents set in medicine for a basic physical illness acceptance?

    It goes like this as far as I am concerned...

    1) "viral and bacterial insults and even less obvious physical triggers can cause pain, drowsiness, long lasting fatigue, cognition issues autoimmune problems, paralysis, headaches, etc etc indefinitely and we can treat that with antiviral meds and a host of other things ".... Basic long accepted medical fact!!!!

    2) "viral and bacterial insults and even less obvious physical triggers CANNOT cause pain, drowsiness, long lasting fatigue, cognition issues autoimmune problems, paralysis, headaches etc etc indefinitely...... when we don't do any medical tests and suddenly forget the trigger may not be obvious and tell you by default you have CFS or ME"

    So unless you have the version of viral/ bacterial, tic bites or unknown caused insults that can be fatal immediately and you die within a few days you are fine. If you just have to endure all of those above symptoms for ever then its nothing.

    Only "mental illnesses" have a spectrum.
     
  11. barbc56

    barbc56 Senior Member

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    You know, and Ive said this before. If me/cfs were depression, I would go down that road without hesitation, to get better.

    BUT IT'S NOT, I've had both and they are qualitatively different.

    Depression from a chronic disease, is not the same and if you didn't feel down, you wouldn't be human. There are therapist who deal with chronic medical conditions and in my experience nothing was even mentioned that it's an illness believe.

    My therapy was short term. It was mostly how to work around my illness, ways to handle the impact it can have on relationships and hooking you up with so social services if needed. Also some coping skills which has helped others. Included were helping me process what is going on to help me to come up with strategies.

    I've had depression, even before this illness. Fortunately, it's pretty much been resolved with psychotropic medications and this time of year with light therapy. Also getting treatment to improve sleep. But you have to make sure you're on top of it and sometimes the medication needs to be tweeted. I also can't take certain psychotropic medicines such as SSNRI.

    I currently see a therapist on an as needed basis. It's for a different issue which sometimes incldes any impact this may have on my current situation.

    Barb
     

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