AMERICA'S BIGGEST COVER UP 50 things to know about CFS

Discussion in 'Fibromyalgia Main Forum' started by bunnyfluff, Mar 15, 2006.

  1. bunnyfluff

    bunnyfluff Member

    This makes for some interesting reading. Of course, somewhat controversial.

    http://www.chronicillnet.org/CFS/Ostrom/book_ToC.html


    I am Chapter 47- I became ill after getting a blood transfusion. I also like the chapter that talks about the "grades" of CFS, and the progression of this stuff, because although they say it is not progressive, I think most of us feel like we do progress.

    Let me know what you think. [This Message was Edited on 03/16/2006]
  2. morningsonshine

    morningsonshine New Member

    Hi,
    I went to the ruemy once before X-mas, and i'm not going back.
    He also told me CFIDS didn't exist, and i didn't have it.
    I'm so mad, because he undiagnosed me in my medical records, and then told me i have hypermobility syndrome.
    Which is another who knows what diagnosis.

    When i asked him, how do you explain all my earaches and sore throats, and swollen glands, he said, you have little kids, they bring home stuff.

    So what, my kids are making me sick? I better get rid of them! LOL
    Why am i the only one sick then? Why don't all mothers of young children have my problems then?

    Those aren't real questions, i'm just being sarcastic!
  3. findmind

    findmind New Member

    I think alot of drs dont believe in the name of the illness. I always try to say just my symptoms because they might then think outside the box and order tests that thay wouldn't if I say c.f.s.

    I read Ostroms booklets way back in 1995. Really opened my eyes, but don't think everything is correct.

    Next you should (slowly!) read Osler's Web by Hilary Johnson. Spellbinding.

    findmind
  4. Sandyz

    Sandyz New Member

    I sure could see myself in that. I now have the serious bladder disease, IC. I always wonder what`s going to hit my next with this DD. It`s unbelievable that people are this sick and the a lot of the medical community and goverment denies it and downplays it.
  5. bunnyfluff

    bunnyfluff Member

    in my throat. I did notice that quite a bit of the information was by Dr Cheney.

    There is something going on, and they don't want to admit what's wrong with us, and try to say we're just a nutty bunch of women, and quite frankly, it's p*$$##g me off! Dr Cheney talks about ppl who have such high levels of T4 or something they are off the charts, and he can tell they will be the sickest ones, and the mycoplasm, and I think that some of it was set up for chemical or germ warfare at some point, too.

    There was one article I was reading today where the Govt. made some researchers stop their investigations, and shut down their lab, because they were on to something.

    All I know is that I am sick, and I have some remissions, but I relapse, and I am getting sicker each time in some small way. I have to take more meds to maintain. Something isn't right with this. We are purposely being shut out. I feel like an X-File. The Truth Is Out There!
  6. PepperGirl52

    PepperGirl52 New Member

    I have felt for a very long time that those of us who work/worked in the health care profession were more at risk for some of these mysterious diseases! I have seen it for a long time, and now am experiencing it for myself.

    I worked in an allergy clinic for many years, and I'd have to say that at least 50% of the nurses there ended up with Lupus, CFS, Fibro, RSD or some other weird disease. I really do believe it was from being exposed to those antigens!

    Another thing I have noticed, too, is that when I got the flu in Jan. I got a bad case of cold sores (herpes), and I have not had an outbreak of them since I was a child.

    Yep, very interesting article-wish more physicians would read and TAKE NOTE! PG
  7. Betty325062000

    Betty325062000 New Member

    My pulmonary doctor's lab showed up several autoimmune problems so he referred me to a rheumy. I gave her the lab reports which said I should have a list of follow up studies. She said she didn't know anything about the labs I had brought to her and did a nothing lab of her own. She said come back for a follow up in 3 months so I made the appointment.

    When I went to my primary care doctor he, as he always does, gave me a copy of what she sent him. In that she said she didn't see anything wrong with me, that I had a history of elevated sed rate and it doesn't respond to medications. I had seen her for the sed rate a few years back. My hands look to me like pretty bad Raynauds and certainly feel like it. I had had 2 minor procedures done that required anesthesia. Both times they could not get oxygen levels on me. One of the doctors told me I should see about that. Much of the time I really can't use my hands and my feet are purple and have problems there.

    I see no reason to keep the apt. I have scheduled. Last week I talked to my primary care doctor about that. I see the pulmonary doctor again next week and I want to talk to him about the lab he had done. Probably after that I will go to another rheumy. My primary care doc was ready to refer me but I asked that we wait until I see the pulmonary doctor.

    I don't know if "mad" describes it but until I get a better word for it I'm mad.
    BVan (Betty)
  8. zerped

    zerped New Member

    The AMA announced its finding that alcoholism is a disease in 1954 or 1955. Quite a few people (and, unfortunately, some doctors) still think of alcoholism as a moral failing or weakness. In any case, what kind of training to med students get to prepare them for the problems of addiction? One 3-hour class out of 12 years (if they're lucky!). I used to work at a treatment center, and the number of doctors out there who don't know that you don't give Vicodin or codeine to an addict in treatment is absolutely staggering.

    Unfortunately we may be looking at the same thing with our diseases. If they're not taught in med school, doctors and nurses will simply have no clue about treating us. The only exception is someone like an MD here in Portland who himself has fibromyalgia and now specializes in treating fibro and CFIDS patients. There's no problem convincing HIM that these things are real.

    Thank God for the post elsewhere of the statement by the Surgeon General recently. I am photocopying it and carrying at least one copy with me at all times. Being able to tell some idiot that the Surgeon General doesn't want him ignoring FMS/CFIDS any longer is small consolation, but I'll take whatever I can get! : o)

  9. marw

    marw New Member

    Do you recall where the post (or name of it) is about the Surgeon's General's Statement re FMS and CFS? I would like to have a copy of it.

    Thanks,

    Margaret
  10. foggygirl

    foggygirl New Member

    I'd also like to get my hands on a copy of the Surgeon Generals' report. Where can I find it?

    Thanks,

    Foggygirl