Discussion in 'Fibromyalgia Main Forum' started by LindaJones, Oct 30, 2009.

  1. LindaJones

    LindaJones New Member

    Why is there skepicism about CFS and not about other medical conditions like MS for example?
    [This Message was Edited on 10/30/2009]
  2. karynwolfe

    karynwolfe New Member

    just made me think of that
  3. AuntTammie

    AuntTammie New Member

    not too long ago there was skepticism about MS - it was referred to as hysterical paralysis.....many other diseases have also come thru a period of time where they were disbelieved and ostracized, though of as psych illnesses, etc

    the sad thing is that instead of learning from all those cases and thinking that maybe CFS is actually (gasp) a REAL illness and not in our heads, the medical community continues to make the same mistakes......I believe that in the case of CFS, it is mostly about politics and money and that there is a major cover up going on.....however, I also think that many Drs are just too caught up in their own egos and either they think that if they haven't figured it out, it must not be real, or else the fact that they cannot figure it out is a threat to their egos and they resort to placing the blame on the "crazy" patients

    (please know that I do not grp all Drs into this category - there are some very good, very caring ones out there, and some that are even willing to admit that they don't have all the answers....unfortunately, from what I have seen, they are not in the majority)
  4. spacee

    spacee Member

    asthma was considered psychological and, stomach ulcers.

    When is any one in the medical community going to notice that they put people through terrible times and "then" figure out that it is something real. My FIL suffered with ulcers for decades blamed on his type A personality.

    My pediatrician said, "if it isn't in the doc's head, then it is in your's."

  5. UsedtobePerkyTina

    UsedtobePerkyTina New Member

    I like that quote.

    I think a common denominator here is that MS and CFS and FM are all more common in women.

    We aren't dying from these illnesses. And the biological evidence is slow in coming.

    While I understand the doctor on main street not knowing anything until 2007 when CDC came out with the announcement, I simply do not understand the CDC not recognizing the organic nature of the illness from their look into the Incline Village outbreak. They saw the EB antibody levels in those patients. But they then were convinced that whatever it was, it wasn't an outbreak, so why study into it, not health threat to large population.

    Still, anyone at CDC who is responsible for keeping up with CFS should know of the MRI abnormalities, neurological test abnormalities, immune system abnormalities, central nervous system abnormalities and more.

    The only logical reason I can see for dismissing this evidence is one of the following:
    1) Ego will not allow the person to admit his previous beliefs were wrong.
    2) Does not believe the tests / evidence is reliable
    3) Believes these people all have something else wrong with them and have been mistakenly lumped together.

    I called the CDC when I got sick. I specifically asked for someone at the CDC who specializes in CFS. I don't know who I talked to. It was a man. I asked him to give me his opinion of the FFC in Atlanta.

    This man confirmed that he was the one at the CDC who was most knowledgeable about CFS. He said he had not heard of the FFC. (I should have seen then. He hadn't heard of it and it is in the same city he is in? He specializes in CFs and this clinic was especially set up to treat CFS?) Second, he said there must be something going on in my body causing the fatigue. Basically, CFS is a result, not an illness of its own. After talking to him about my situation, he said my sleep patterns were off and I needed to get into the sun as soon as I woke up to get my melatonin right.

    That was good advice. I am sure that change would help. But obviously he was either very ignorant or did not believe the research other doctors had that showed that CFS has its own biological abnormalities, separate from other illnesses, beyond melatonin being off kilter.

    But I was ignorant myself, then. It was nine months into my illness and I still wasn't even sure I had CFS. I had read a lot online, but also saw the differing opinions and had not drawn definite conclusions at that time.

    Now, I think I could teach that CDC fella a thing or two.