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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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ME / CFS and cervical smear tests

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Scarlett, Feb 8, 2011.

  1. Scarlett

    Scarlett

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    Apologies if I haven't posted this in the right section, I wasn't sure where to put it.

    Has anyone else had problems with cervical smear tests? Every time I have a smear test I invariably have to go back again more than once for repeat tests because they come back 'inconclusive'.

    I wondered if anyone else has had a similar thing, because presumably there is some abnormality with the cells that makes them question it each time?
  2. ukxmrv

    ukxmrv Senior Member

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    I had my first abnormal smear test when I was in my late teens. It was in a pre-cancerous catagory and treated with freezing. My ME started a couple of years later. The abnormal smears recurred over time and been lasered and biopsied. My sister has also had the same problem. We have early cancers in my family but not cervical cancer normally.

    Assuming that it is a XMRV related problem and/or related to my poor immunity and other viruses that keep coming back.

    Don't know what your inconclusive result could mean though. Sorry, not a good thing to go through.

    XMRV+
  3. Scarlett

    Scarlett

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    Thanks UKXMRV - sorry to hear you've been through all that. They're nasty things anyway! Thankfully mine have never been to the point of biopsy, they always take about three or four smear tests before concluding that it's healthy. Just every single time I have one, it comes back inconclusive several times and I wondered if that's a normal thing with other people with ME?

    Thanks all
  4. LaurelW

    LaurelW Senior Member

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    Yup. Me too.
  5. taniaaust1

    taniaaust1 Senior Member

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    Years ago (it may of been before i got CFS/ME?) I had a smear test that the doctor wasnt happy about and I got told I'd have to have more regular smears then normal as there was a need "to watch things". That went on for a 2? years before I could go back to the normal time length between tests.
  6. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    I've wondered about this myself, as mine came back inconclusive for many years, saying there was inflammation that hindered a good analysis. When they started doing the newer thin-prep technique, they came back ok. I have read that the cervix may be one of the places XMRV hides-maybe the white blood cells fighting it cause inflammation there. Scarlett, have they used the thin-prep technique? It used to be a little more expensive here, but certainly worth it if you keep getting inconclusive results.
  7. Scarlett

    Scarlett

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    Thanks all. I'm not sure about the method actually for the last one. I had three recalls and I vaguely remember that the doctor said they'd done something different on the last one which was more accurate... trouble is, my lack of brain means I can't remember!

    I must be due for another soon because it's been nearly 3 yrs I think, so it will be interesting to see what happens this time.
  8. Scarlett

    Scarlett

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    By the way, I haven't been tested for XMRV so I don't know if it's present, but I have 'classic' neurological ME.
  9. justy

    justy Senior Member

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    Yes i have had problems too. I had a couple of abnormal smears about 5 years ago. They came back CIN1. then i had a colposcopy and biopsy - but showed abnormalities. I chose to monitor it, which we did for about 4 years. During the 4 years of monitoring i would have a colposcopy,smear and biopsy every 6 months. By looking the Dr could see the abnormality but my smears started coming back normal. Then i had another abnormal biopsy and decided to have LETZ procedure. This tipped my M.E over the edge back to moderate/severe. When they got the tissue sample back it showed no precancerous cells, but the Dr could definately see something during the colposcopy. I wish id never had the treatment now as i didnt need it.
    I havent been tested for XMRV, but have wondered about this since hearing it shows up in cervical cells. Could that have been the abnormality they saw? no answers im afraid Scarlett, but it something to think about. It would be interesting to see what others experiences are .
  10. Scarlett

    Scarlett

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    That's interesting - I hadn't heard that XMRV shows up in cervical cells. I wonder how many doctors find abnormal cells which aren't cancerous and go on to discount them because it's not cancer - it could be a clue pointing towards some cellular issue with ME patients.
  11. ukxmrv

    ukxmrv Senior Member

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    I think only in monkeys so far (XMRV and cervix). The WPI and Dr Singh will probably have looked in humans but it hasn't been published yet. I'm expecting this to be the case. It's one of the reasons why XMRV has fitted my own circumstances.

    From a post by Dr Cheney to Rich

    http://www.mecfsforums.com/index.php?topic=1916.0

    The virus was also found in the epithelium of the cervix in the female macaque

    XMRV+
  12. ahimsa

    ahimsa Senior Member

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    This first part matches my own experience. Freezing the cervix was the standard treatment back then -- this was 30+ years ago when I was either 18 or 19. I'm not sure whether they do the same treatment now but it was quite painful. The freezing didn't hurt but the thawing part of the process was horrible. For those who have ever had pain in your fingers after being out in the cold, imaging that same kind of pain in your cervix and multiply by 1000. I don't understand the mechanism of this pain, or if everyone has it, but it was bad.

    The good news for me was that after that first treatment my cervical smears (called Pap smears in the US) have always been normal. I do have a history of endometriosis though so the rest of my reproductive system has always been a bit messed up.

    My ME/CFS didn't start until about 10-11 years later. I was 29 when I first got sick.

    Marjorie

    Edited to add that I have not been tested for XMRV.

    Edited again (LOL!) to add a question - isn't it HPV (human papillomavirus) that is the suspected cause of cervical cancer? So why would XMRV be a factor? Or maybe the HPV connection is incorrect?

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