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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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The sexual abuse question

Discussion in 'Latest ME/CFS Research' started by Cort, Aug 7, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    The question regarding sexual abuse in ME/CFS or fibromyalgia or other controversial diseases seems to be coming up more and more. The CDC is absolutely convinced that sexual abuse is a significant factor in ME/CFS.

    One woman wrote a book about her experience sexual abuse and how it related to her ME/CFS. Interestingly resolving her issues with her abuse did not take care of her illness. Tad Taylor, the MCS designer, said that many people he knew of with MCS had experienced it.

    Could sexual abuse so disturb a person's physiology so as to make them prone to ME/CFS later on. If so why wouldn't any physiological insult early on do the same?

    This study found that the general category of sexual abuse was not increased in fibromyalgia but that rape was. Other categories of 'somatic' illness (most pain syndromes) didn't have increased rates of sexual abuse.

    JAMA. 2009 Aug 5;302(5):550-61. Links
    Sexual abuse and lifetime diagnosis of somatic disorders: a systematic review and meta-analysis.



    When rape was included fibromyalgia, chronic pelvic pain, etc. popped up.

    CONCLUSION: Evidence suggests a history of sexual abuse is associated with lifetime diagnosis of multiple somatic disorders.
  2. Jody

    Jody Senior Member

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    Oh for heaven's sake.

    I have heard this a few times. When I saw a neurologist a few years ago, he asked if I'd been sexually abused early in life. His manner wasn't objectionable, at least. He just was saying that there were indicators that this was often the case, and wondered if it were the case for me.

    I told him no, and shake my head each time this thing comes up.

    I'm sure it's possible that sexual abuse could be part of the package for some people. If a constantly frightened amygdala is at the root for us, then yes, sexual abuse could figure ... for those who have been abused.

    To me it's just another red herring flopped on top of the growing pile of red herrings on the laps of us chronics. Instead of all this speculation, maybe they could turn their attention to curing the thing. Honestly!
  3. Wayne

    Wayne Senior Member

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    History

    Hi All,

    Just thought I'd mention that a doctor I was seeing in the early 1990s said he was hearing this very same thing, even back then. It's amazing the conclusions some people jump to when confronted with medical/health issues they can't seem to understand. Unfortunately, once erroneous notions of any kind take hold, they're almost impossible to eradicate.

    Wayne
  4. Jody

    Jody Senior Member

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    Wayne,

    This nonsense has been floating around for that many years?

    Wonderful.:rolleyes:
  5. SDD1244

    SDD1244 Guest


    I was so angry when I checked out the CDC's website on CFS and saw in big red letters "NEW - Publication Linking Sexual Abuse and CFS". It says in the report that "childhood trauma appears to be a potent risk factor for chronic fatigue syndrome". link: http://www.cdc.gov/cfs/publications/causes_40.htm

    Well I wasn't sexually abused and I didn't have any childhood traumas that I'm aware of... so my message to the CDC is: DO YOUR JOB !

    It really shows you how much of a role politics play with this. The fact is that if you are disabled and have CFS... your employer's disability plan is going to use the argument that CFS could be a mental illness.
  6. Tony

    Tony Still working on it all..

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    Jason and Taylor's study found the opposite:

    http://www.ncbi.nlm.nih.gov/pubmed/11708672

    and that PTSD was a more possible outcome of abuse.

    http://www.sciencedirect.com/scienc...serid=10&md5=c11ba9b7fe14f2467565b013a974fadf

    The CDC are at least a confused bunch IMO. And they do use that ridiculous empirical definition that blows the prevalence out to 3%, includes lots of people with major depression etc.

    Hilary Johnson on the CDC study, whack!:
    http://www.psychologytoday.com/blog...child-abuse-disordered-patients-or-disordered
  7. Frickly

    Frickly Senior Member

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    Cdc

    The CDCs website really ticks me off too. No wonder doctors think we are all damaged individuals who just need therapy and an antidepressant.:mad:
  8. jenbooks

    jenbooks Guest

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  9. Cort

    Cort Phoenix Rising Founder

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    Great article by Pamela and many good points by Hillary. The CDC is apparently going to redo that definition and it'll be interesting to see how their research shows up after that.

    That said the CDC is big on this. I've been reading their papers for years and this was the first one in which I could sense their excitement. They appeared to go out of their way to promote the significance of this study - that was just my sense of it. I think they've bought this idea; hook, nail and sinker.

    I'm more with Jody on this that's what's important is nailing down the physiological problems in this disease. The CDC over the past few years - with Dr. Reeves firmly in control - has been just miserable at this.
  10. RestingInHim

    RestingInHim Realist

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    Of course...ANY kind of immediate trauma or prolonged stress will negatively impact ANY type of disease since the immune system is compromised by these factors. How ridiculous to narrow it to ONE kind of trauma! I'm with most of these others, I had a wonderful childhood and didn't contract CFS until I was 41! I am just grateful for the on-going research for the physiological cause and cure for CFS!
  11. Jody

    Jody Senior Member

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    Hi Resting in Him,

    Welcome to the forums.

    It is frustrating isn't it. First we have such a difficult condition as CFS and then we have this sort of thing on top of it to deal with.

    Honestly for the most part I do my best to tune out this sort of thing so as not to get too focused on it. It is maddening, insulting and there's nothing I can do personally about it. So I try to put it aside and stay focused on healing and developing a life again.

    I hope you will find some things to help you in the direction of healing here.
  12. Dolphin

    Dolphin Senior Member

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    What makes you think this?
  13. Cort

    Cort Phoenix Rising Founder

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    Dr. Reeves pledged to produce an international conference aimed at creating a new definition in his testimony, I believe, to the CFSAC panel and in the strategic draft five year plan. He promised several international conferences - another of which is to create an international network and one I believe to... come up with treatment guidelines (?). That's my recollection.

    I would note that one was supposed to occur this summer.....
  14. Dolphin

    Dolphin Senior Member

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    http://cdc.gov/cfs/draft_5yr_research_plan.htm

    There are these two references in the plan which back up to some extent what you say about the definition:

    B. Goal 2: Improve clinical management of CFS patients by developing and providing evidence-based educational materials that address evaluation and clinical management of CFS.
    1.Develop international consensus regarding diagnosis of CFS in clinical and research settings (i.e., research, clinical, pediatric/adolescent case definitions).
    2.Develop international consensus regarding management of CFS and future research direction.


    and

    2. International Workshop - CFS Case Definition
    CFS is defined by symptoms and disability, has no confirmatory physical signs or characteristic laboratory abnormalities, and the etiology and pathophysiology remain inchoate. Difficulties with accurate case ascertainment contribute to this ignorance. To help resolve this, CDC convened an International CFS Study Group, which met in 2000, 2001, and 2002 and in 2003 published recommendations to guide systematic and reproducible application of the case definition. The Study Groups recommendations have been criticized as too cumbersome for routine use in clinical practice and there is a need for current international consensus as to status of the published 2003 Study Group recommendations and as to an appropriate CFS case definition for health care providers. In 2010 CDC will convene an international workshop to discuss research and clinical CFS diagnostic criteria for adults and children and will produce published guidelines as to diagnostic criteria.


    We shall see what happens. The International Study group produced a paper earlier this year (Are chronic fatigue and chronic fatigue syndrome valid clinical entities across countries and health-care settings? Hickie I, Davenport T, Vernon SD, Nisenbaum R, Reeves WC, Hadzi-Pavlovic D, Lloyd A; International Chronic Fatigue Syndrome Study Group. Aust N Z J Psychiatry. 2009 Jan;43(1):25-35. Review.) which included "The present
    study supports that recommendation and suggests an empirical diagnostic algorithm similar to that used by the Centers for Disease Control and Prevention [51]."


    But really the paper didn't see to have any connection with the Reeves (2005) definition at all. Fingers crossed things might change but until it's definite I'm not going to say that the CDC is re-doing the definition. It might - fingers crossed - but who knows what direction it will go. Peter White wouldn't like anything too tight [e.g. he helped organise (and fund!) the Oxford criteria meeting as they didn't like the CDC '88 definition - the Oxford criteria basically just involved fatigue].
  15. Cort

    Cort Phoenix Rising Founder

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    Thanks Tom for finding that reference.

    That's the big question isn't it - who will be involved? Will it be more like the empirical definition or the Canadian consensus definition? Can't imagine the second occurring...On the other hand can Reeves afford another flop?
  16. Dolphin

    Dolphin Senior Member

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    I don't know. But I imagine they won't necessarily want anything that changes the empirical and certainly the Fukuda definition too much. Researchers can have lots of ongoing studies - not just studies that are finished but studies that are still ongoing or even recruiting - so they may not like statements which are too harsh on existing criteria. Just a thought.
  17. Freddd

    Freddd Senior Member

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    I've known quite a few who have been sexually abused and quite a few with CFS/FMS but the intersection of the two groups has been pretty much a null set. It seems really a stretch to me. Of course having worked with statistics I know you can make them say anything you want if you work at it hard enough. Did you know that 93% of all murderers eat tomatos or tomato products?
  18. Frickly

    Frickly Senior Member

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    Freddd

    Wow...thanks for the heads up. I am so releived that my husband hates tomatoes. Unfortunatly, my sister loves them.. I will have to keep an eye on her.:D
  19. Jody

    Jody Senior Member

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    Hmmm, Freddd.

    Always been suspicious of them tomatoes.:eek:
  20. Jody

    Jody Senior Member

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    Frickly,

    Better not turn your back on her ....:D

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