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ME/CFS and Beating the Clock
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Article in UK Royal College of GPs Journal

Discussion in 'General ME/CFS Discussion' started by olliec, Nov 30, 2013.

  1. olliec

    olliec

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    I wrote a piece for this journal which is read by British GPs.

    https://twitter.com/ollie72/status/406845530673651712/photo/1

    I'm pleased they highlight the point about the fact GPs typically see patients at their best, as we're too sick to see them at our worst. I am also glad they have left in it mention of the UK ME Association's "purple book" about ME which is a well-written summary of the state of research and treatments.
    NK17, WillowJ, Jenny and 11 others like this.
  2. justy

    justy Senior Member

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    Thank you for writing this piece Olliec. However I cant read the print its much too small - even when I click on it to get a bigger version. Would it be possible for you to paste it here so that we can read it?

    Thanks,
    Justy
    MeSci and Allyson like this.
  3. alex3619

    alex3619 Senior Member

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    "You look fine" is something we hear a lot, and something that doctors observe. Most doctor no longer visit the very sick at home, they have no idea what happens when we are too sick to travel. Ollie is completely right that doctors have a filtered and biased view.
    merylg, MeSci, justy and 2 others like this.
  4. aimossy

    aimossy Senior Member

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    Thanks Olliec.
  5. Allyson

    Allyson *****

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    yes - yet they never say that to someone with cancer who can also look totally fine even in very late stages (esp if not on chemo); same for diabetics and people with MS....we need more concrete tests IMO

    Ally
    merylg likes this.
  6. alex3619

    alex3619 Senior Member

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    Yes, but we also need the tests we already have to actually be used. The policy that is widespread of not doing tests is a policy of ignorance. While possibly not relevant to EDS (which has its own tests) in ME we do have one reliable test for which results cannot be denied ... that 2 day CPET. Of course this cannot be used on bedbound patients or patients close to being bedbound.

    I am hopeful that if the current range of biomarkers are shown to be consistent and replicated independently that we can get those out as well. Things can be demonstrated to be wrong, and if we can get doctors using these tests then their attitudes will change and they will wake up to what is really happening. Medical regulators and HMOs however will resist testing ... they will argue that without a treatment what is the point. The point is that demonstration of disability is an important social change, and the evidence of disability can improve our social context.
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  7. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    When I had my first severe attack of hyponatraemia, had a violent Parkinson's-like tremor and could barely stand up, talk or hold the phone and was even having some difficulty breathing, I phoned my GP two or three times to try to get him to visit (partly because I was extremely frightened, not knowing what was wrong and worrying that I might even die, which turned out not to be so far-fetched) he kept telling me to come to the surgery! There was no way that I could. It was weeks later that I was well enough to get there, when my blood sodium was still low (no longer dangerously so), but of course all the severe symptoms had gone, ditto any obvious physical abnormalities, hence the incident being recorded as a panic attack despite my repeated assertions that it was physical. :(
  8. Firestormm

    Firestormm Guest

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    Try this Justy et al. Hope you don't mind @olliec but I had it already from another source :) Congratulations on getting this published :balloons:

    Attached Files:

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  9. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Great - thanks, @Firestormm
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  10. Allyson

    Allyson *****

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    again lost my post as it closed out the page....

    here it is again

    never heard of that one Alex - could you enlighten please?

    also testing for OI/POTS - common ME symptoms - is rarely done

    this is easy to test and requires no special equipment - you do not even need a special tilt tablt for a TTT -til t table test

    blood volume testing is also easy yet rarely done either

    Ally
    justy likes this.
  11. alex3619

    alex3619 Senior Member

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    Hi Ally, CPET stands for cardio-pulmonary exercise testing. Day one can be poor for ME patients, but not usually. However that induces a crash, which can be measured on day 2. This is the only disease in which this is known, and can distinguish between healthy and ME/CFS (I don't think they always use an ME definition) at around 95% accuracy. MS patients do not show this abnormality.

    This is what is studied at the Workwell Foundation.

    In time I expect this test will become diagnostic. Its darn close to that already, but needs some papers specifically aimed at convincing the medical community. In particular it might have to meet strong evidence-based requirements for diagnostic testing. If that happens then it may become the Gold Standard for ME, and any research not using it can be labelled sub-standard - and that might include psychobabble.

    Here is what I think psychobabble will do though: they will come up with a new name for CFS and label everyone who is not proven to have problems using the 2 day CPET with that new name.

    Seeing patients at their best is what the day one test is about. Seeing patients at their worst is what the day two test is about. These are then compared.

    I do expect resistance to the 2 day CPET though as it is not cheap and requires a dedicated facility or the right equipment which I think costs around $50,000 without taking into account the need for trained staff.
    Last edited: Dec 1, 2013
  12. Allyson

    Allyson *****

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    - oh I give up!

    - I wrote a longish rpely - copied as I went in case server ate it

    sure enough server ate it

    my copy was not saved or would not post


    so frustrating!!!!

    anyone else having this issue? no drafts were saved! happens every time I post - on this forum only
  13. Allyson

    Allyson *****

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    anyway @ alex thanks
    my post was about using exertional dyspnoea as a similar kind of strong indicator as I think it is a near universal symptom in us


    A
  14. Mark

    Mark Acting CEO

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    Could you post about this in tech support forum please Allyson? Say what browser version (Internet Explorer/Firefox/Chrome/etc + version number) and operating system (Windows/Mac) you're using. For me the browser now always saves a copy as I go along and it's there at the bottom of the page when I go back to view the thread. If you're using Firefox or Chrome you could also install the Lazarus plugin which saves everything you type into web forms so you never need lose a post again.
    Allyson likes this.
  15. alex3619

    alex3619 Senior Member

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    Write to a text file, then cut and paste when you are done.
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  16. biophile

    biophile Places I'd rather be.

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    Sometimes I think "you look fine" is a misguided attempt at encouragement. Recently I was told I "looked well", even though I was staggering around struggling to stand up with a headache and my eyes were droopy and half closed and blood shot.
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  17. PDXhausted

    PDXhausted Senior Member

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    Yes- my in-laws, both psychiatrists, always make sure to tell me how well I'm looking, despite the fact that I look terrible. I'm sure they mean it as an encouragement, but all it does is invalidate my experience. You'd think psychiatrists would know better, but no. At least they do seem to realize something is physically wrong with me, but only because they knew me pretty well pre-illness.
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  18. Firestormm

    Firestormm Guest

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    @alex3619 re CPET I am confused by your comments above pertaining to this being diagnostic potentially of ME.

    On another thread I was in agreement with you, when you said this is more likely (I paraphrase) to be diagnostic of the individual being disabled, and until we had a disease marker for ME, and hence a far better understanding of what ME actually was, CPET cannot be considered diagnostic of the disease itself. At best I would think it is diagnostic of an individuals inability to recover following specific exercise testing.

    And, of course, we need to see much more work on CPET: to ensure it really is something unique to those who meet the current criteria for ME (let lone is capable of diagnosing what we term PEM (Post Exertional Malaise) which I for one am not convinced it is - at least not to the extent that many of us have come to experience and recognise PEM); and through independent replication and larger cohorts.
  19. alex3619

    alex3619 Senior Member

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    Hi @Firestormm, currently it is only diagnostic of functional incapacity of the patient until it undergoes more validation. I have said repeatedly though that I think that it will finally have the right studies for this to be diagnostic, presuming the results are as we expect. That is why I said:

    Currently its most useful for individuals, and is only fully diagnostic of functional incapacity. To prove diagnostic validity of ME requires a much higher standard of evidence. We do not have that yet. That doesn't mean that studies that are being planned cannot do this.

    We need to know specificity and sensitivity. Specificity basically means ruling out other causes, sensitivity basically means ruling in ME. In a study with a cohort of healthy controls it was about 95% accurate, which meets the threshold for diagnostic in terms of percentages, but does not meet the other requirements. I think I have read the full paper but I can't recall the details, but here is the press release:

    http://www.workwellfoundation.org/wp-content/uploads/2013/08/Press-Release-2-day-CPET-Final1.pdf
    (This link is from the foundation research page, but currently does not appear to be working.)

    Phoenix Rising had a blog about related stuff here: http://phoenixrising.me/archives/17902

    It notes, and I agree with Simon on this:

    Please note the Workwell Foundation pose this as a question.

    http://www.cebm.net/?o=1025

    Now if EBM is used, then for ME to be fully validated also requires multiple prospective cohort studies with follow-up to ensure accuracy, or for the test itself multiple diagnostic studies which are found to be consistent. In one survey I read recently about 75% of doctors (in Australia) approve of the EBM approach, though most don't actually use it ... another issue for EBM.

    There is also the issue about what is meant by validation. Validation is usually something that independently verifies findings by another method, at least in science. In terms of medicine it can have different meanings, and be different again for the general public. In part this was why I set up this thread:

    http://forums.phoenixrising.me/inde...r-perspectives-in-medicine.26765/#post-408762

    In the eyes of the wider medical community, government, the general public and institutions like NICE and the IOM, validation will require substantive research that is not yet done, or dissemination of the current research with some extra justification, or widespread use of the 2 day CPET so that the medical community convinces itself from experience.
    Last edited: Dec 2, 2013
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  20. alex3619

    alex3619 Senior Member

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    Critical Path?

    I think for ME to be fully accepted as validated by basically everyone except die-hard dinosaurs will require a few steps. Multiple independent replication of the 2 day CPET with moderate sized cohorts and good control groups will be required, then they will have to show consistent results. Then we can disseminate this far and wide and gain some limited validation. Then we advocate hard.

    If a prospective cohort is followed then this removes even more potential bias, and multiple prospective cohort studies with consistent results is even better. However I doubt this will happen as its way too expensive, and takes too long, and we aren't exactly being deluged with research money.

    In the meantime the test is completely good for demonstrating incapacity in individual patients.

    One thing I do think will work is widespread use of the test will create a massive real world validation experiment. Once thousands of doctors are using it for hundreds of patients apiece this will change the landscape. It did for MS anyway as a result of MRI etc.

    PS Databases like that of the Open Medical Institute might well create the validity we need for the test to be considered diagnostic of ME. With enough data things can begin moving.
    Last edited: Dec 2, 2013
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