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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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New paper: Inability of ME patients to reproduce VO2 max indicates functional impairment

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Apr 23, 2014.

  1. Valentijn

    Valentijn Activity Level: 3

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    The CPET was extremely cheap at KDM's office in Brussels. In the neighborhood of 100 euros I think.
     
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  2. A.B.

    A.B. Senior Member

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    One or two day testing?
     
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  3. NK17

    NK17 Senior Member

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    @alex3619 Dr. Barry Marshall (an amazing Australian doctor;)) proved that the bacterium Helicobacter Pylori is the cause of most peptic ulcers, by infecting himself with H. Pylori and subsequently developing peptic ulcer.

    For this important "discovery", or shall we say reversal of the medical doctrine, which previously supported stress, spicy foods and stomach hyperacidity as causes of ulcers, he was awarded the Nobel Prize in Physiology.

    Makes you wish we had a similar scenario with ME, but I think the situation is a tiny bit more complicated ... ;(

    As far as CPET's cost goes, here in the US, specifically in California the Workwell Foundation charges at least $ 2000, a sum of money that for most of us is out of reach.

    I don't think that any insurance policy, at this time, covers or reimburses it and that is why we need to be advocating studies done by our ME/CFS doctors' clinics, funded by the CDC, but with the 2 Days CPET.
     
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  4. peggy-sue

    peggy-sue

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    How can they justify charging $2000? Have they got a closed-shop union like lawyers do?
    It's not expensive to do.

    To many folk nowadays know the price of everything and the value of absolutely nothing. :bang-head:
    (wearing my grumpy old wumman head today)
     
  5. Kati

    Kati Patient in training

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    @peggy-sue the equipment is not inexpensive. You need gas exchange reading machinery, ECG machinery, a bike, and manpower. These machines need to be serviced. Then there is software costs, including the xognitive testing software which is not particularily free. Then these people have to earn a living, on top of covering the cost of the location.

    And while these services are expensive, oftentime they are priceless in validating illness and for proof of disability.
     
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  6. NK17

    NK17 Senior Member

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    Well @peggy-sue I think you're pretty close when you mention a "closed-shop union", in fact I would call it a monopoly ...

    I also think they justify the high price by the fact that they are the ones who have been putting out solid clinical data on this specific test and the peculiar results in PWME.


    My ME dr. told me to wait until his clinic will have the capacity and proper technician to interpret it, but so far they seem busy with other important clinical trials, none of which involves a 2 days CPET. Eventually they'll run it but if it's with the CDC's money it seems it will be done only on one day only, so we're basically back to square one!

    Eventually if we push for it, more of our drs.' clinics will start to offer it, but for the time being I think our specialists are all overloaded with clinical and research work and have to prioritize and strategize ...

    Also here in the US there is no universal social medicine and prices are inflated by the insurance companies greediness and by doctors who have to buy very expensive malpractice policies to cover their backs. The situation is simply CRAZY!!!

    In sweet old Europe you have cuts to health services and if you have ME/CFS, you're certainly not in a better position, except maybe lucky enough to have the chance to get a CPET done, only not to have it recognized for disability purposes.

    That's why we have to organize an international movement, backed by our doctors, to have this test done properly, by knowledgeable people, over 2 days and in clinical trials settings.
     
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  7. NK17

    NK17 Senior Member

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    Well explained @Kati, as usual you make complex details, quite easy to grasp ;)
     
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  8. Kati

    Kati Patient in training

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    I hear the cost of a cognitive test is close to 5000$-

    You pay for a service. The Workwell foundation are very much the best around. My test was not performed there and their CO2 sensor was de-calibrated, invalidating all of the results and there was no way to fly again across the country to get it done again and I got a 2mo ths relapse from that. i didn't know this ( the problems with the sensor) until after the fact.

    You pay for the equipment, the time, qualifications and ta detail report that will describe abnormalities and typical pathology to all of your physicians including your GP.
     
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  9. alex3619

    alex3619 Senior Member

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    Darn, much cheaper than what I heard some time back about the USA, which is about $2000 for two day testing.

    I spent $500 recently for basic cognitive testing which told me nothing. I was told that I really needed testing that costs thousands, cash please. Cost is relative to what you get.
     
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  10. alex3619

    alex3619 Senior Member

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    Barry Marshal is a hero of mine, has been for like 20 years. Actually I traced the research showing H pylori (actually this family, not the specific pathogen) caused ulcers to 1875, the nineteenth century, in Germany. It was ignored. What Barry Marshall did was prove it in a way that could no longer be totally ignored, which got patients interested, and the rest is history.

    CPET is the first test we have that is soundly backed by independently replicated published controlled studies. We need to push this. Other tests will come along though, this is only the first. I also have high hopes for PET scans, cytokine testing etc.
     
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  11. NK17

    NK17 Senior Member

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    @alex3619 You are amazing, I can't imagine what you would have accomplished if you weren't affected by ME!

    And yes we really need to push for all these tests.
     
  12. alex3619

    alex3619 Senior Member

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  13. Ruthie24

    Ruthie24 Senior Member

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    @NK17- Some private insurance policies will reimburse for the 2 day test. Mine did partially- last year at least. Medicare won't.

    In addition to Kati's excellent analysis for why it costs so much, Workwell also justifies the cost of their testing by saying that the fees are used to support them in doing more research. Since they are no longer affiliated with a university they have to find ways to pay for the research studies they are doing. They say doing the disability evals (2 day CPET tests) are how they are getting money to continue their research- which is what they're primarily interested in doing.
     
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  14. Art Vandelay

    Art Vandelay

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    In spite of all this, I saw a survey last year that showed that around 70-80% of Australian doctors still don't prescribe antibiotics for peptic ulcers!
     
  15. biophile

    biophile Places I'd rather be.

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    I'm weary about the risk of relapse with this test and the cost of it, but in the end I would be OK with saving up $1000 and risking prolonged relapse in a one-off (2 day) CPET test, if it meant we would finally no longer be subjected to psychobabble in the future and unrealistic expectations about mind over body recovery, and would never have to redo the test on a periodic basis, unless feeling much better and testing the objective reality of my own self-perceived recovery.
     
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  16. Valentijn

    Valentijn Activity Level: 3

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    I did a single test, but maybe people can arrange for a two-day test (probably costs double)?
     
    Last edited: Apr 29, 2014
  17. Valentijn

    Valentijn Activity Level: 3

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    The CPET equipment at KDM's clinic wasn't even remotely brand-new looking, but all functional. About what you'd expect to see in a well-used clinic or university setting.

    However, the blood-pressure monitor kept trying to over-inflate and popping off, so they'd probably benefit from having one which isn't as picky about getting a strong consistent reading. A lot of us tend to have low pulse pressure, which results in weak readings that often get missed or ignored by BP monitors. But BP isn't a primary concern in the CPET, so meh :p

    My big batch of results from the clinic included a half-page summary of the CPET results - KDM is a cardiologist, so he knows his stuff! Highlights are an usual ECG wave with a merged T and U wave, VO2max at 52% of expected predicted value, and RQ of 1.23 indicating definite maximal effort from me. Also a page of results with all of the raw data.

    So I think most of the expense from other locations is coming from the equipment used, and probably the software, and possibly to fund research costs as someone else suggested. Basically it's the difference between a clinical setting and a research setting - the clinical setting is much cheaper! A clinical setting doesn't require the absolute perfection needed in a research setting.
     
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  18. alex3619

    alex3619 Senior Member

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    That is scandalous, especially since the research by Barry Marshall was right here and he shared a Nobel prize!
     
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  19. Sean

    Sean Senior Member

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    He and Robin Warren.
     
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  20. peggy-sue

    peggy-sue

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    When on earth did the "avoid spicey foods" come in to it? :wide-eyed:

    I've certainly heard it, but what is the justification?

    The ancient Egyptians used cumin to calm IBS; :thumbsup:
    Ginger is good for nausea; :thumbsup:
    Garlic is antiseptic and antifungal; :thumbsup:
    And we all know about turmeric... :thumbsup:
    it goes on and on...

    Do they actually mean avoid chilli, just so you can avoid the afterburn bit where you discover you should have put the toilet paper in the 'fridge? :p
     
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