Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
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Where is our Philadelphia???

Discussion in 'Action Alerts and Advocacy' started by Crappy, Jan 27, 2011.

  1. Crappy

    Crappy Senior Member

    I feel very discriminated against!

    No Tom Hanks, Antonio Banderas, Denzel Washington for us???

    Why has HIV/AIDS so lavishly received funding and recognition over basically the same period of existence? While CFS/ME has been treated like a step child?

    I am terminally frustrated with this disparity.

    There is no romanticizing our struggle, no Hollywood recognition. Doesn't this treatment fly in the face of the Democratic Principles so vocally espoused by so many in Hollywood?

    We need to sell the perception our illness is sexually transmitted. Then every philanderer in every political office and theatrical endeavor will be terrified and recognize this illness.

    The HIV/AIDS community did a masterful PR campaign.

    Where is our Publicist???

    Our illness is implicated in Heart Failure, Cancer, Septicemia. Our illness may have a role in every major killer in existence, but we "can't get no respect".

    What do we have to do to be treated fairly?

  2. kat0465

    kat0465 Senior Member

    if we died quickly we would get more attention.problem is, like u said we get cancer,heart failure,and a lot of other diseases stemming from cfids.
    but most people dont know that. i was hoping xmrv would scare the crap out of everyone...........;/ still waiting.
  3. Cort

    Cort Phoenix Rising Founder

    Find that person!
  4. Jemal

    Jemal Senior Member

    It looks like the XMRV virus is causing serious (life threatening) disease only after decades, in many people. Because of that timeframe, it's very hard to connect these diseases to it (and in the end there might be no connection I guess, though I think there is). And like kat0465 says, we aren't dying like flies, which would be a big attention grabber. The situation just doesn't look urgent to many people. Many of us are also housebound... that doesn't help with getting attention either.

    If XMRV can be connected to diseases like breast cancer or autism, those will certainly be big attention grabbers.
  5. illsince1977

    illsince1977 A shadow of my former self

    One of my favorites! You know Tom Hanks got an Oscar for his performance, didn't you?
  6. Desdinova

    Desdinova Senior Member

    As long as PWME aren't falling over dead in a short period of time like AIDS Patients were (back in the 80’s and early 90’s) it will never happen. Folks can live for years with ME and its accompanying Co Morbid conditions before they contribute to Heart problems and Cancer. And in most people’s eyes and most of the medical community eyes this is at best only indirectly connected and on average not connected at all.

    After all in their minds PWME are just lazy deadbeats looking for handouts (Welfare, Disability etc.) and attention through sympathy. And suffer from nothing more on average then Depression, anxiety and some form of Somatization along with a sprinkling of one or two other odd mental and/or emotional disorders. After all we often appear fine and just don't look sick.

    For PWME it sadly seemingly all lays at the door of finding what causes ME, which is what helps ensure that we stay in the plight that we have been in since the beginning. Those who stand against us intentionally through malice know this. A virus, a disease that causes Cancer and Heart problems is bad enough.

    But one that can take years to develop into those Problems while leaving many of the afflicted with a debilitating health condition and co-morbid conditions gets really expensive really fast. The old saying that "It's all about the Money" is very true for PWME when World Governments (Especially those with Universal Health Care systems) and Insurance companies look at PWME they don't see us they don't see our faces they see money, they see dollar signs, they see a liability.
  7. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    make a film of the Ian Proctor case or similar, THAT will put a right bloody rocket up the SOBs!
    child abduction abuse, torture and sadism, all by the STATE
  8. Tia

    Tia Senior Member

    It's coming but it's to soon yet, xmrv is still unknown to the masses, wait til it gets known and gets media attention. BUT Remember. It can scare them to and get ME stigmatised, u don't want that, I know I don't.
  9. SilverbladeTE

    SilverbladeTE Senior Member

    Somewhere near Glasgow, Scotland
    Well, we're stigmatized already! ;)
    "hysteric women"
    sigh :(
  10. Desdinova

    Desdinova Senior Member

    It's also important to realize that Health official’s world wide tried to deny that there was any kind of epidemic. Then when they admitted that something was going on they Implied that it was small and tried to say it was psychosomatic.

    When that didn't fly they tried the” it's a life style campaign, it’s only gay men". Next it was only Gay men and Heterosexual men who saw prostitutes. Followed by its only Gay men, Heterosexual men, prostitutes, and Drug users.

    Then when young kids and Adult straight women who weren't drug users or prostitutes became infected and their husband’s weren’t Gay, frequenting prostitutes or using drugs came down with it the denial game was over.

    After this Hysteria began to take off amongst the World population because they knew that something was out their running rampant possibly in the blood supply. There was the period of time for about a year or more where you couldn't read or watch the news without seeing something about it. You just don't get that with ME/CFS because there is no in your face body count, no video diaries of young people in their 20's and 30's dying quickly in a shockingly short period of time.

    What we go thorough is different
    We’re healthy and productive people who enjoy life.
    We come down sick and never get better.
    But we don’t look sick to others we look fine.

    They notice a change in you.
    You seem less motivated less energetic, maybe moody and emotional.
    But again you just don’t look like a sick person you look fine to them.
    You go to the Doctor if you haven’t been going already and he runs some tests if you’re lucky.

    Family, Friends and Co Workers begin to ask about the changes they see in you, too each other and to you.
    They’re alarmed because you seem less out going, pulled back, reserved and lacking motivation, drive and energy. You seem depressed.
    You confide in some of them that you’re going to a doctor or doctors to try and figure out what’s going on with your health. If your doctor has run blood tests you might mention that and any results if known.

    Time passes you get worse see more doctors maybe have more tests ran with negative or inconclusive results.
    Then comes the Dreaded D word, once unleashed by someone it quickly spreads to the lips of those around you until little if anyone at all believes that you’re not depressed and that you could get better if you wanted to.

    Your life changes.
    At best you find a way to deal with it maybe even with time manage to accept it. At the worst your life disintegrates seemingly before your eyes into a living hell and you find yourself almost if not totally alone.

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