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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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A dream: to sit in a chair for her birthday

Discussion in 'Action Alerts and Advocacy' started by SilverbladeTE, Mar 28, 2013.

  1. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    npbody so young should ever suffer so :/


    sianrecovery likes this.
  2. Ember

    Ember Senior Member

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    Jessica posted yesterday, “Again, somehow I've managed to land in the paper, and my dad was interviewed on the radio. Phenomenal! It's strange in a way because things like that just don't happen to our family! I shall post the article tomorrow,”

    There's another thread about Jessica here.
  3. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Oops sorry didn't know it had been posted :/
  4. sianrecovery

    sianrecovery Senior Member

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    Heartbreaking.
  5. Misfit Toy

    Misfit Toy Senior Member

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    It really is heartbreaking. I never realized until the internet and only a few years ago, that people were this unwell with ME. 24 years I have been sick and I was only made aware of it a few years ago. Most people I know with CFS, may be indoors, housebound and sometimes bed bound, but to not get in a chair? I wish I could wave a magic wand for Jessica and so many. It's just heartbreaking, eye opening and sickening that no one knows much or is doing anything, really doing anything to move this along for Jessica and so many with this dreadful disease.
    Little Bluestem likes this.
  6. adreno

    adreno 3% neanderthal

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    Tundras of Europa
    It is hard to believe that people can be this sick without any abnormality on tests. There has got to be a clue somewhere as to what is going on. Being this sick would require massive infection or inflammation going on, and it must show it trace somewhere. Maybe the family do not have money for testing. Maybe there is no one knowledgeable to help them. But I believe given the right test and the right treatment, almost anyone can improve. It's sad to see someone suffer like this, and I really believe it is not necessary.
    Little Bluestem and Valentijn like this.
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Adreno
    um, no it's quite believable to me
    we know jack SQUAT about the Universe we live in
    our society has a momumental arrogance and blindness to this fact that we know so little.
    the complexity of biology vastly out does that of physics...and the latter as we go "deeper and deeper" gets more and more bizzare and complex, yet it's the underpinnings of everything we make, for example.
    tiny exmaple: only recently was it discovered the brain produces it's own insulin.
    Every day, more is learned.
    With such ignorance, how cna you test for what you don't know?
    and tests DO show problems with M.E. patients, MRI scans and autopsies show serious anomalous damage to the brain and very specific areas where sensory nerves enter the brain stem

    now, I'e had both low blood sugar and meningitis, so I can relate the over sensitatization, the pain, distress etc, of bright light, noise, dealing with multiple things/people at same time etc, to the M.E. experience.

    no one in their right mind would suggets that a person with meningitis, very low blood sugar or similar problem affectuing the brain (which includes rabies by the way), would not have terrible time of it.
    Same thing with us. Just varies in severity.

    if I get it right, Sophia Mirza died because her body was so incredibly exhausted and sensitized that even water was provoking an immune response
    (have I got that right?? *asks of the folk who've read up more on it*)
    There's 2 way sto advance:
    1) deduce the actual udnerlying specific cause and treat that
    2) trial and error find out what treatment works

    in medicine we can't do much of #2 because suffering and death are result of many wrongly used treatments.
    But since we canot as yet find the specific cause we're left high and dry :/

    People react very differently to any illness, some are almost immune, some have catastrophic bad reactions
    so, one person may never get the Flu, another get's inflammation and infection of the brain or heart and dies!
    most folk though lie in between.
    we seemto be the unuusal cases for which some problem erupts, as it does for diabetics, arthritis, etc.
    We still do NOT know what trully triggers most immune disease. The effects, yes, but not the initialspecific trigger and why.
    As time goes on we learn more hence work on diabetes and arthritis and by completely coincidental research that ends up overlapping, shows how peculiar and linked etc such are.
  8. outofstep

    outofstep

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    I totally agree. She deserves to know what's wrong with her at the very least. She could have anything, from prion disease (which can be conveniently hidden as "ME"), to Lyme, to a viral infection. Many of these illnesses are treatable. If her family cannot afford testing then they may be able to raise funds via charitable contributions. If nothing is done then what are her options?
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Here's a great video from Jessica about her life with ME.

  10. lansbergen

    lansbergen Senior Member

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    It is hard to believe but it happens. Some of the infected young animals I was monitoring even died and nothing showed up at autopsy.

    If it is what I still think it is that is not suprising.
  11. Navid

    Navid Senior Member

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    what do you think it is lansbergen and do have ideas as to how to treat. you can pm me if you prefer. i too am desperate to get out of my bedbound state.

    thanks

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