The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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NHS infectious disease docs

Discussion in 'General ME/CFS Discussion' started by msf, Dec 6, 2014.

  1. msf

    msf Senior Member


    I don't know if my experience is representative of the NHS as a whole, just the Infectious Disease docs, or just the two docs I have seen, so I am putting my experience here in case it chimes with that of others.

    I saw a different NHS ID doc for my follow-up appointment yesterday. I have not been impressed so far. This has not been my experience of the NHS as a whole, as both my GP and the neurologists I have seen seemed to be genuinely trying to find out what might be wrong with me, albeit without success so far.

    This, however, does not seem to be the case with the ID docs. This is despite the fact that I have tested positive for an infectious disease, which you would have thought would come under their aegis. I appreciate the fact that they probably have never seen a patient who has tested positive for Yersinia Enterocolitica before, and that therefore they have very almost no knowledge of it, but what I find it difficult to accept is that they don't seem to be interested in it. I would have thought that an interest in unusual infectious diseases would be a prerequisite in an ID doc, but apparently not.

    According to the one I saw yesterday, their 'belief system' [sic] dictates that, once certain infectious diseases like Giardia are ruled out, there isn't really anything they can do for patients like myself. I asked whether Yersinia Enterocolitica was one of these diseases and was told that it wasn't. Perhaps someone who is more knowledgeable about ID than me can tell me why Giardia is seen as a serious, chronic infection, yet Y.E. isn't? I think the real reason why it isn't seen as one is that they (the ID docs I have seen) know almost nothing about it.

    I came to this conclusion after I realised that a.) they didn't know that Y.E. can cause chronic illness. b.) they didn't know that IgA positivity has been associated with Reactive Arthritis. c.) they therefore only tested me for IgG, which in their own words is only 'an immunological memory.'

    They also ordered several tests that I had already had done, but this was less their fault than that of the NHS as a whole, which thanks to the database fiasco, seems to be stuck in the pre-internet age (none of the results of my previous tests were available to them).

    I did agree enthusiastically with one of the doc's statements, though: he told me that 'we probably won't find any answers.'
  2. ukxmrv

    ukxmrv Senior Member

    It's been the same as my experience with NHS doctors. They do not believe that many of the common infections that PWME test positive to (let alone one that they have never heard from) can cause a chronic illness or any lingering symptoms. The NHS doesn't even have a test for HHV6.

    This is a hugely controversial topic with patients and doctors on each side.

    What this means in the UK is that the type of medical treatment for infections available from some private doctors is not available on the NHS. Some NHS doctors are more agreeable to trying treatments though if you see them as a private patient.

    Our choices are therefore to

    1. Keep trying to find someone in the NHS who understands the infection(s)
    2. See a private doctor either in the UK or abroad who specialises in treating infections
    3. Treat ourselves with drugs off the internet or herbs or supplements etc

    I don't know if you have ME or CFS but in the UK NHS a "genuine interest" in finding out what is wrong with any of us rarely extends to reading any research (apart from the Govt NICE Guideline or similar).

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