An old one - but really shocking nevertheless....

Discussion in 'Fibromyalgia Main Forum' started by goingslowlycrazy, May 5, 2003.

  1. goingslowlycrazy

    goingslowlycrazy New Member

    I was absolutely STUNNED when I read this! Kim Snyder mentions it in the end credits of her acclaimed 'I remember ME' video..and while surfing for info, I came across this. My apologies if it is old news to you...
    Did it get big coverage in the USA?
    Imagine if it had been a Cancer fund or a Heart Disease Fund...we would never have heard the end of it!!!!!
    Anyway, I'll go lock myself in a cupboard and vent!!!!! Here it is:

    Date: Wed, 13 Oct 1999 19:44:18 -0700
    Reply-To: (removed by goingslowlycrazy)
    Sender: Chronic Fatigue Syndrome and Fibromyalgia Information Exchange

    From: Melissa O'Toole
    Subject: ACT: CDC Sorry for Diverting CFS research funds.

    CDC Sorry for Diverting Funds

    .c The Associated Press


    ATLANTA (AP) - The head of the Centers for Disease
    Control and Prevention apologized Wednesday to people
    with chronic fatigue syndrome, saying the agency was
    wrong to divert millions of federal dollars earmarked
    to study the mysterious illness.

    CDC Director Jeffrey Koplan promised a ``reinvigorated
    effort'' to study chronic fatigue, which leaves some
    people so drained they can't perform simple tasks.
    Some rarely leave their beds.

    Earlier this year, an audit showed the CDC had
    received $22.7 million from Congress for chronic
    fatigue research, but less than half the money was
    used for that purpose. At least $8.8 million was spent
    on other programs and $4.1 million could not be
    accounted for.

    ``It is clear to all of us that we, CDC, have made
    serious mistakes and have done so for several years,''
    Koplan told 16 chronic fatigue patients and their
    advocates at agency headquarters in Atlanta. ``I
    apologize to each of you personally.''

    CDC officials have not explained why the money was

    The agency has promised to restore $12.9 million for
    chronic fatigue studies over the next four years, but
    patients say the slight was about more than money.

    They believe the CDC's action reinforced a perception
    among some doctors that their illness is a mental
    problem, an excuse for laziness or even a joke.

    ``I think a lot of patients here feel it speaks as a
    derision to the disease - `Is there such a thing as
    CFS?''' said Jonathan Sterling of Oradell, N.J.

    Sterling said he had to quit his job as principal of a
    junior high school after he became ill 10 years ago.
    He said getting on a plane to Atlanta was an ordeal in

    ``I can make it through the day. But the next three or
    four?'' Sterling said. ``You can hear my throat's
    already getting sore. I'm getting a headache.''

    Researchers don't know what causes the syndrome, when
    it began, how many people have it or how many new
    cases crop up each year.

    The CDC is almost three years into a study in Wichita,
    Kan., and estimates that about one-fourth of 1 percent
    of the population there suffers from chronic fatigue.
    The CDC says it mainly affects middle-aged, white

    So we get $12.9 million back? That's very generous of them! It still leaves us short by $9.8 million!!!
    This is just so awful...and representative of how it was viewed back in 1999.
    I pray that those involved are more enlightened now!

    Mary x
  2. AmyKaiser

    AmyKaiser New Member

    it was good to see this in print...
    last week when i called NCF, the institute who funded the research that discovered the fish neurotoxin recently discovered, Gail the president of the program said the government is going to be held accountable for something..
    She had stated that they were in deep water so to speak and having been on the phone with her for 45 minutes i didnt get all the details on that for i was more interested in the fact that she ALSO said this neurotoxin was discovered 12 years ago and BURIED..

    it makes me our lives are expendable..
    however, its like with AIDS..until an affluent government officials family member is stricken with a disease, they dont care much

  3. klutzo

    klutzo New Member

    Read the book "Osler's Web", which is the complete history and chronology of CFIDS. Many libraries have a copy. Though non-fiction, it is written like a murder mystery and really holds your attention. I say that up front since I fear some of you may be scared away by it's length, about 700+ pages. As a support group leader, I felt that I had to read it, and prepared myself for my punishment, but was surprised to find that I could hardly stand to put it down! It was that good. You will be very well informed if you read this book, but you will also be even angrier than you are after reading this post...there's a lot of other stuff that has gone on besides this diversion of funds.
  4. goingslowlycrazy

    goingslowlycrazy New Member

    Amy - I agree totally - if one of the Bush family had this, there would be all kinds of funding going on (not that I would wish it on anyone...honestly!) but it does make me angry!

    Klutzo - very many thanks for that suggestion. I have just been on Amazon USA (our UK one didn't have it) and have managed to order a second hand copy of Osler's Web...also a second hand copy of 'Running on Empty' which I have wanted to read for a long time..they should be here in two weeks.

    I feel a bit mean stirring everyone up when this is such old news...but it was new news to me, so I thought it might be new to others too....and with our 'BIG' day coming up, we need to get fired up!

    Mary x
  5. Mikie

    Mikie Moderator

    It's all politics and it's all spelled out in "Osler's Web." It may heavy reading, and I'm still not all the way through it, but it explains why we do not get recognition.

    The CDC is starting to fund some research into our illnesses, so all is not lost, but it's waaaaay to little and waaaaay too late.

    I still think the govt. is afraid it's nasty little secrets about testing germ warfare agents on military and civilians alike will be exposed when CFIDS is better understood.

    Love, Mikie