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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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Interesting Google Searches

Discussion in 'General ME/CFS Discussion' started by PhoenixDown, Jun 11, 2013.

  1. PhoenixDown

    PhoenixDown Senior Member

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    If you Google:

    CFS "turns out"

    with the quotes, you'll find numerous people who were misdiagnosed with CFS.

    Attached Files:

  2. Valentijn

    Valentijn Activity Level: 3

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    I take those with a grain of salt. Most of them are common co-infections or additional diseases ME patients are likely to have. But the "I really have ..." post gets made as soon as the diagnosis is made, not after treatment for the new diagnosis is complete and the patient can determine if the symptoms are actually gone.

    Though in either case (misdiagnosis OR comorbid issue), it should be a clear indication that ME patients require thorough biological investigation.
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  3. snowathlete

    snowathlete

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    This happens a lot, and as Val says, it highlights the need for thorough investigations. In one of De Meirleir's recent videos he talks about ~50% of his patients turning up with other infections that are treatable; i think he says Borrelia, Bartonella and Brucella but I guess they were just examples and things like parvo, herpes viruses, enteroviruses, etc. are part of that figure. But he also says not to lose the ME diagnosis on this basis alone.

    My recent Bart, Parvo and likely Borrelia don't mean I don't have Me/CFs at this stage, and even after treatment, if successful, I don't know that would rule it out either necessarily.

    Well worth testing for all this stuff and trying to treat, IMO.
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  4. Allyson

    Allyson *****

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    World-renowned EDS expert, rheumatologist Professor Rodney Grahame (University College London) points out that, in America, almost 650,000 cases of EDS are missed ANNUALLY, based on studies that suggest almost 95% of cases presenting to clinics are missed, most often diagnosed with other things (Fibro/ME/csf/POTs
    etc.). [/SIZE]
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  5. ahimsa

    ahimsa Senior Member

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    There are patients who were misdiagnosed with ME/CFS and who turned out to have something else. I completely support looking for an alternative diagnosis if ME/CFS seems like it's wrong.

    But there are also a lot of patients with more than one diagnosis. These folks might post saying "turns out I had" when they were just adding information about a new problem, not necessarily overturning their ME/CFS diagnosis.

    I did the same google search that was posted. The third link in my results was to a CFS blog where the person is describing how they first got sick:

    http://surviving-cfs.blogspot.com/p/about-me.html
    "Turns out I had mononucleosis. ..."

    So, that's not an example of misdiagnosis as far as I can tell. (I did not read the whole blog)

    To give a personal example, it turns out I had endometriosis (tissue normally found in the uterine lining is found growing outside the uterus, can cause pain, infertility, etc.) long before I had ME/CFS. My diagnosis was confirmed by surgery many years ago. In all the different ME and CFS diagnostic criteria that I have read I have never seen endometriosis listed as an exclusionary condition. So, I think it's pretty uncontroversial to say that I have both ME/CFS and endometriosis.

    In fact, a woman diagnosed with endometriosis is 100 times more likely to have a diagnosis of CFS compared to other women. (I can dig up the reference if you want it.)

    It sure would be nice if there was some sort of a limit or quota, e.g., only one illness per customer. ;) But there are a lot of us here who have multiple diagnoses on top of ME/CFS.

    Often there is a proven correlation (e.g., the well known overlap between ME/CFS and OI). But that does not mean we know the cause. Does one illness cause one or more of the other illnesses? Or does some unknown underlying issue cause two or three correlated illnesses? Or what? It's complicated.
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  6. WillowJ

    WillowJ Senior Member

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    yes, it's complicated, because there is both the problem that people who are genuinely explained by other diseases are getting badly diagnosed (not just with something thought to be a 'wastebasket' diagnosis but someone with MS, for example, may go through diagnoses of RA and bipolar disease before getting proper diagnosis)...

    and the problem of people having multiple illnesses. In the case of ME/CFS, the inclination of doctors is to necessarily discard the 'wastebasket' diagnosis once diagnosed with Lupus, cancer, sleep apnea, celiac, EDS, and so forth, but this is not necessarily correct. Having one autoimmune or connective tissue disease (if ME is either of those) makes it more likely to get another.

    Of course when doing studies it's sometimes preferable to find patients with only ME if possible, but in clinical practice people certainly may have more than one disease and for us this seems quite likely.
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  7. Allyson

    Allyson *****

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    And i just read of a genuine case o f Dx with MS who turned out to have LYme - 2 actually i think.


    mysteries!

    A

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