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A comparison of sex-specific immune signatures in Gulf War illness and CFS

Discussion in 'Latest ME/CFS Research' started by Firestormm, Jun 27, 2013.

  1. Simon

    Simon

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    Well, glad they got that right, though I would like to see a replication before insisting patients undergo two maximal exertion tests in 24 hours. To me, it seems a bit reckless - I certainly have relapses at way less than one maximal exertion, let alone two.

    As for PEM, I do think that's an intersting way to go, eg the VanNess 2010 single maximal exertion study:

    While a White (not that one, think Light) 2012 study found a highly significant increase in symptoms in CFS patients after moderate exercise, while there was no increase in either controls or MS patients, though the sample size was very small.
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  2. Bob

    Bob

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    I've never understood how patients can undergo exercise testing. A moderate to heavy exercise session could probably be enough to make me bed-bound for years.
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  3. Bob

    Bob

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    Yes, that's an interesting study. We need more studies like that, with large numbers of participants.
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  4. Firestormm

    Firestormm Senior Member

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    I was catching up with Jennie's earlier blogs this morning. Thought this might be of interest to you gents it's from her 3 June blog about the CFSAC Meeting:

  5. SOC

    SOC Moderator and Senior Member

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    Dr Sol, the exercise physiologist at Dr Klimas and Rey's office does exercise testing only up to, but not exceeding, the patient's anaerobic threshold. This does not give a VOmax number, but my impression is that she believes the VOmax info is not necessary. It the AT that is significantly lower in PWME and that can be tested without causing PENE. Also, it's the AT number that patients can use to adapt behavior; the VOmax isn't useful to us from a treatment point of view.

    Unfortunately, disability testing requires VOmax testing (I think), so that's still done for people applying for disability services.
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  6. SOC

    SOC Moderator and Senior Member

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    ETA: Clinicians probably do believe that 2-day exercise testing is bad for patients. We all know it is. Should patients get routine 2-day exercise testing. No. However, is it important for diagnosis and research outcome information? Probably. Two different conditions/needs.
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  7. Simon

    Simon

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    Thats interesting. I think that in contrast Snell found VO at AT was normal, but work output, and hence efficiency was low. It looks to me like there is still quite a lot of uncertainty about how patients react to exercise: still a work in progress rather than a diagnostic test.

    I hope it will be possible to show up the problems with this illness without resorting to VO2max, as in the Light/White study I mentioned; not so good having a diagnostic technique that can cause a relapse :(. As well as the PEM, that moderate exercise study also found differences in gene expression.
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  8. SOC

    SOC Moderator and Senior Member

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    Yep, still plenty of work to be done. I'm still hoping they'll eventually settle on a less damaging test.
    Not so good is definitely an understatement. :) I've done it twice and it wasn't fun either time. Still, anesthesia and biopsies or spinal taps aren't all that hot for anyone, either, but they're done when necessary for diagnosis or research. I really hope we'll have a less damaging diagnostic, but if that's what we've got in the short term I'd rather use it than have no diagnostic at all.
  9. Bob

    Bob

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    I've just been watching the CFSAC video, and I don't agree with this specific assessment of Jennie's, here. Dr Unger said that they have so far relied on questionnaires, but stated that they are now moving on to (objective) physiological testing. She also seemed to suggest that the study will evolve, and may be open ended, until they get some useful results that can be used to clearly subset patients.

    For example, Unger said, at 0.43.07: "We are going to do an exercise component; it will have cardiopulmonary testing in it; at this point it's not a two day protocol. And we are going to be doing cognitive testing."
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  10. Firestormm

    Firestormm Senior Member

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    Thanks. So not the 2 day test that was of concern above but something possibly similar over the one-day maybe. Have to wait and see then I guess.
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  11. Simon

    Simon

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    Beth U
    Beth Unger was equally clear in her FDA Workshop presentation that they would be doing both cognitive and exercise testing on a subgroup in the next stage of the study.
    I'm not sure we have a diagnostic yet. Are we looking for changes in O2 consumption at Anaerobic threshold, VO2max at first test, or VO2max at second maximal test? Or efficiency at anaerobic Threshold at first or second maximal test? Or even PEM after moderate or maximal exercise testing? I think exercise challenge is a very important research tool, but I'm not convinced the evidence is there yet for true diagnostic use (though I am delighted if there is something that insurers will accept as one).
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  12. Ember

    Ember Senior Member

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    I completely agree with Jennie's assessment. Dr. Unger's refusal to administer the test-retest cardiopulmonary protocol is unacceptable. I transcribed her responses to those questions here.
  13. Bob

    Bob

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    Then you didn't read the quote that I provided.

    (I'm not critiquing Jennie's blog as a whole, I'm just correcting this specific point. I have a lot of respect for Jennie, and I appreciate her advocacy work.)

    Jennie's blog indicates that Unger is not carrying out cardiopulmonary testing, but that the CDC is purely relying on questionnaires and clinicians' observations of clinical course. This is not the case.

    Jennie's blog says:
    But the bolded text is not correct. Beth Unger said (watch at 0.43.07): "We are going to do an exercise component; it will have cardiopulmonary testing in it; at this point it's not a two day protocol. And we are going to be doing cognitive testing."
    (And she has restated this at other times.)

    That's a slightly different issue. Yes, I agree that two-day testing would be more helpful than one-day testing. Considering their resources, it would be a missed opportunity.
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  14. Ember

    Ember Senior Member

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    In the context of the question that Jennie has referenced, there seems to be one issue. (Watch 1:00 – 6:25). Jennie addresses Dr. Unger's refusal to use the test-retest cardiopulmonary exercise protocol:
    Dr. Unger did speak of the CDC's intended reliance on questionnaires and clinical observations for functional outcomes in response to Mr. Krafchick's first follow-up question:
    Pressed again on the two-day protocol, Dr. Unger said that they will use questionnaires and cognitive tests to measure the response to “a maximal exercise test that can be done at one day:” “We're using some patients questionnaires. We're also using some cognitive testing that can be given online.”

    The CDC has refused then to use the second stress test mandated in the two-day cardiopulmonary exercise protocol. Jennie rightly asks, “CDC, how could you refuse to use this test?!
  15. Bob

    Bob

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    Ember, either Beth Unger is not telling us the truth, or they are doing one-day exercise tests which will include cardiopulmonary testing. She has clearly stated that they are using one-day cardiopulmonary testing.
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  16. SOC

    SOC Moderator and Senior Member

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    I agree, we haven't figured out what the correct measure is (or even if there is one) that will be truly diagnostic. But the only way to get that info is for some patients from all ranges/subsets to be willing to do exercise testing of different kinds. :ill:

    In my experience, exercise testing to determine AT and lifestyle/activity management to stay below AT is a substantial factor in improving our health. It's not a cure, by any means, but I think it may be a way to keep from getting worse until more substantial treatments are found.
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  17. WillowJ

    WillowJ Senior Member

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    I understand that, but OTOH, I might become bedbound and unable to speak, or perhaps even die, if I did do such testing. Also there is no practical way to reduce my activity much below what it is now, short of taking to my bed permanently (which I refuse to do so long as I have a choice), or at least never/ almost never, going out to a doctor or family event or any such (which I limit a lot already).

    So I will leave the maximal and two-day testing to people with better physical function than me, and hope they come up with something better for severe and very severe patients.

    I'm pretty good at biofeedback (just too stubborn to implement it quite thoroughly), so I think I'm ok without. I have one or two doctors who would benefit from seeing the results of such testing (one or two I like - I've met lots more I don't care much about who would also benefit), but I can't have everything.
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  18. Ember

    Ember Senior Member

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    Dr. Snell concluded his FDA presentation this way: “A single exercise test may be insufficient to distinguish between CFS/ME and sedentary controls.” And Dr. Unger presented next.:thumbdown:
  19. Bob

    Bob

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    Later in the video (0.43.50), Beth Unger states, in relation to exercise tests:
    "We are going to be doing cognitive testing afterwards, to show that change, and the suggestion of looking at resting heart rate, we can easily incorportate that into that post monitoring as well."

    Here she is responding to suggestions that she incorporates post-exercise resting heart rate tests.
    So this is in addition to the cardiopulmonary testing that will be carried out during exercise.
    The discussion was in relation to ME patients' resting heart rate taking a long time to return to normal after exercise, which was suggested was unique or unusual.
    Unger also made notes when she was encouraged to meet Dr Snell, so hopefully she will act on that, and meet him.
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  20. SOC

    SOC Moderator and Senior Member

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    Exactly! There are people who should certainly not try to undergo maximal or two day exercise testing, at least not unless they're choosing to make a major sacrifice for research. And no one wants to die, even for research purposes. :eek:

    Dr Sol's exercise test was super easy, even though I was housebound or wheelchair bound outside of home and in bed or recliner all but a couple of hours a day at the time. No fatigue at the time and no crash afterwards. That doesn't mean that would be true for all patients. Goodness knows we don't know enough about exercise testing to insist everyone should try it.

    In the end, everyone has to make decisions like this for themselves, as we do with treatments. No doc is going to force me to do CBT (been there, done that, don't need it anymore), or GET (as it now exists), or any other treatment I think is bad or pointless.
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