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Repeat Test Reveals Dramatic Drop in ME/CFS Exercise Capacity

Discussion in 'Phoenix Rising Articles' started by Mark, Jul 29, 2013.

  1. jeffrez

    jeffrez Senior Member

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    All very good points. From that perspective, the test is actually medically unethical, as it violates the "do no harm" dictum.
  2. SOC

    SOC Moderator and Senior Member

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    Not exactly. :) Doctors do surgical biopsies and spinal taps when necessary for diagnosis. Both these procedures cause some degree of "harm". Some amount of trade-off is accepted.

    The relevant difference between the CPET test and GET is that the CPET is a one-time diagnostic(theoretically) from which one can recover, although it takes time. GET is presented as a continuing therapy, constantly stressing the system and not giving it time to recover.

    That said, I agree that 2-day CPET testing is not ready to be used as a universal diagnostic. First, it needs to be confirmed. Second, there's still a lot we don't know about it and its usefulness. My hope is that using 2-day CPET testing in research will provide enough information that someone will be able to develop a less "destructive" test for diagnosis.

    I have never done the 2-day test. I did the one-day maximal test while I was mild-moderate and had a moderate crash that was a week or two long. Not fun, but not catastrophic. I've had as bad, and worse, crashes from other activities and infections. It wasn't so bad that I wasn't willing to do it again about 5 years later. The second test was not maximal, though, only to VT and was easy -- no crash afterwards.

    We've all had crashes. We get up, we move on. I'm willing to crash (as a one-time event), if necessary, to improve the knowledge base in this illness, especially if it's a planned crash so I can arrange my schedule, and maybe stick a few meals in the freezer. ;)

    Maybe we need to hear, all in one place, from some of the people who did the 2-day CPET -- what their condition was before the test, if they crashed and for how long/badly, what their condition was after the crash. Anybody willing to chime in with their experience?
    rosie26, ahimsa, alex3619 and 2 others like this.
  3. jeffrez

    jeffrez Senior Member

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    Sometimes people don't recover, though, or more commonly, don't recover fully. I think as long as that very real danger exists, it's a bit unethical to test in this way. I guess as long as the patient in an experimental or research setting consents that's one thing, but if a test like this were to become standard for diagnosing CFS/ME, I think it would have the potential to cause a lot of harm, and that obviously less dangerous testing through blood, etc. (or even spinal puncture) would be preferable. It would be psychologically very distressing if nothing else for patients to know they had to subject themselves to a 2- or more day exercise test to get any validation from the doctors.
    Little Bluestem and SOC like this.
  4. Bob

    Bob

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    At the most recent CFSAC meeting, Beth Unger seemed to suggest that they might be including (one-day) post-exercise resting heart rate measures for the CDC's study. (I think it was suggested that CFS/ME patients' heart rates take a long time to return to normal after exercise.) Perhaps this is a good compromise, if she won't include two-day testing for ethical and practical reasons, but I'm not familiar with any post-exercise resting heart rate studies.
  5. Bob

    Bob

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    I agree that this is very important research, and that CPET testing should be carried out with willing volunteers, who know that they will not suffer from long-term consequences from an exercise test.

    But I don't agree that "we get up, we move on" after crashes. Obviously, it's different for everyone, but my ME is very reactive and my crashes tend to be severe, deeply distressing and long-lasting, and I spend my whole life trying to avoid them. I would never agree to any exercise testing unless I was in a very stable period of remission and I was absolutely confident that the exercise was within my safe limits. (Safe enough to avoid a crash.)
    MeSci, Valentijn, Sea and 1 other person like this.
  6. Butydoc

    Butydoc

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    I completely agree with Bob. Unless there is a likelihood of some positive therapeutic benefit, I personally wouldn't subject myself to the almost certain crash that would happen from this type of test. I spoke to people at Pacific labs and was told that some people have crashed for as long as a few months. This seems like a poor trade off just to prove my disease exist.

    Gary
  7. Simon

    Simon

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    Few months? Don't think I've ever got over a relapse that fast. Never mind the malaise, I typically lose over half of my function, and it comes back very slowly. And of course, people like me will self-select themselves out of such a test, making it very hard to know how safe the test would be in general use - as opposed to those willing to volunteer, who are probably people who know their worst case loss is a few months. If I knew that was the worst case for me, I would be more willing to give it a go.
    MeSci, SOC and Bob like this.
  8. urbantravels

    urbantravels disjecta membra

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    I had the test for disability documentation. I can't speak to how they did it for clinical trials, but the disability test includes a symptom questionnaire that asks you about symptoms for a week after the test. I did have PEM symptoms for more than a week, but I think a week's cut-off is practical for the purpose of documenting disability...meaning that being sick for a week after exertion is enough to interfere with your ability to work full-time consistently week to week, and after that going on to be sick for more days isn't relevant for that purpose. Also, self-report of symptoms, as we all know, isn't measurable and objective, so it has only a little usefulness in the context of the whole test. It's more in the nature of supporting evidence.

    I had no permanent or long-term setback from the test. I think I was fully back to baseline within 5 or 6 weeks and the really bad symptoms only lasted about 4 days. I am fortunate in having no particular responsibilities beyond basic self-care, so with preparation (lots of food laid in and everything otherwise arranged so I didn't have to go out or do anything but rest) the recovery period was long, but not agonizing or stressful. I was hitting my pain pills far more than usual due to muscle pain - that is, flu-like muscle pain, not muscle strain from unaccustomed exercise, although of course I had that too. Easy to tell which muscles got overworked from a bike test. But the muscle strain went away real fast compared to the PEM muscle pain.

    The worst crash symptoms actually did not fully set in until four days after the test. I actually felt OK on the second day in terms of general malaise symptoms - better than I expected. In fact, I got home OK (short flight Sacramento --> Los Angeles, accompanied by my dad) and was all settled in for my recovery period before I started feeling really sick.

    But - and this is important - I still had a *huge* plummet in my performance (workload at ventilatory threshold went down 60%) from Day 1 to Day 2 even though I certainly didn't *feel* 60% worse at that point. From this, I think it's possible that PEM symptoms do not track exactly with the decrease in your energy production capability - the decrease in ability to seems to happen quickly, but all the inflammatory-type symptoms may take longer to fully build up.

    I don't know how this fits with the Lights' findings that pro-inflammatory cytokines go up within hours of an exercise challenge. It may be that the cytokines don't have their full effect for a while after they start being produced. Or, it could be that the cytokines continue to rise after the Lights' relatively short follow-up time...meaning that what the Lights are measuring actually isn't yet enough to provoke major symptoms, but it indicates the disease process is kicking off. Or that the body can clear the cytokines for a while at first but is eventually overwhelmed by them. I don't think this is a fault in their research. They are not looking at the entire life cycle of a PEM episode, but for a biomarker that distinguishes people with the disease from people without it.
    NK17, MeSci, ahimsa and 4 others like this.
  9. SOC

    SOC Moderator and Senior Member

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    Good point. I was a bit too flip there with the "we get up, we move on". Every crash I had in my viral-ish days left me little bit worse. Because my illness wasn't as well-managed in those days, I never lasted long enough between crashes to recover that little bit back. Every crash made me a tiny bit worse, and the accumulation was a slow but steady downhill slide.

    I guess I was thinking of participating in research -- I would plan ahead for a crash and do everything I could to ensure I had the opportunity to go into mega-rest mode for up to a couple of weeks afterward. This is what I've done for other important things -- my mother's funeral, for example. Not exactly "we get up, we move on" :whistle:. More like, we sometimes do what we have to do.

    No ME/CFS patient should be required to do a two day CPET. The potential consequences are too high to require that from anyone. I hope some people at all stages of ME/CFS will choose to do the test for the sake of forwarding our knowledge. I also hope those patients will be under the care of a good ME/CFS doc who will help deal with the symptoms involved in the crash -- autonomic dysfunction, infections, cardiac problems, whatever they are. To plan research on severe patients without that kind of post-test support borders on unethical.
  10. urbantravels

    urbantravels disjecta membra

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    That's sort of what I was trying to say in my post - creating a big cushion of rest and recuperation both before and after an expected stressor can help minimize the effects and possibly shorten the crash period. So it's important to be able to do that. I'd hate to have a big exertion and resulting PEM happen on top of one of those sort of "snowballing" crash periods. when something keeps happening to set you back a bit more each time. Pile a huge PEM on top of that and you might have a very protracted crash on your hands.

    I'm not sure what deathly things could happen to you once you are done with the test and are recuperating at home that would require specialist medical intervention. I think people often imagine a huge risk of permanent damage from taking the exercise test and I just don't see that happening. But the only way to know for sure would be to do long-term follow-up on a group of patients.
    ahimsa and SOC like this.
  11. urbantravels

    urbantravels disjecta membra

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    I always tell healthies that I'm actually capable of rapid movement in an emergency, though I couldn't sustain it for long and would pay consequences later. I kept saying "I could run from a bear if I had to" so often that my friend asked me if bear attacks were a big problem in my neighborhood. :eek:
    ahimsa, peggy-sue, Valentijn and 4 others like this.
  12. SOC

    SOC Moderator and Senior Member

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    I found this particularly interesting. In the days when I was still doing the push-crash thing, my delay was 4 days, which seems longer than most people are reporting. I usually hear of people crashing 24-48 hours after over-exertion. I did wonder if the 2-day CPET would catch my more delayed reaction, but it sound like it did for you, which is promising.

    That was a clear and complete description of your reaction to the test. Thanks for that! Your description of a shorter "acute" phase of PEM, followed by a longer phase where you get back to baseline resonates with me. It's very much the way my (now rare) crashes work, but I've never described it that clearly.
  13. SOC

    SOC Moderator and Senior Member

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    I'm thinking of things like viral reactivations or some kind of resurgence of infections. That seemed to happen to me with crashes when I had a pack of chronic infections. Antivirals and abx might be helpful under those circs. I'm also wondering if some people have some kind of autonomic crash after overexertion that could be alleviated with, I dunno, IV saline or meds...?

    For me, the one-day tests have not been bad. You described it quite well. No long-term effects. I never did one when I was in the bedbound stage, though, so I don't know what it might have done to me then. Still, having done one before I was bedbound, I don't think I would have been afraid of trying it when I was. It might have been miserable, but I've been miserable with this illness, so that's not a big deal. I wouldn't have expected any permanent damage.
  14. Bob

    Bob

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    Yes, I had the feeling that you'd experienced worse crashes than it appeared from your comment.

    Yep, we all plan for big days, by resting before-hand etc., but a day visiting family, for example, is completely different to a maxed out exercise test. I've been through long periods of my illness where I only have to take a short walk and I crash severely. I can't think of anything worse for me than a maxed out exercise test!

    Obviously many patients might feel confident that an exercise test is OK for them to participate in. But we've all got to safely make that decision for ourselves.


    Each individual is different. A number of us here seem to be saying that an exercise test would be really bad for us. For myself, it could mean years of added distress if I had a bad crash. And it's very likely that I would have a bad crash if I exercised to the max, just once. Two days could be asking for a life time of hell. Remember that we're all different, and so the extent and severity of flare ups, in reaction to exertion, is different in all of us.

    I'd like to see this research taken forwards, but it's got to be done safely, and not every one will be suitable to get involved.
    MeSci, Simon and SOC like this.
  15. urbantravels

    urbantravels disjecta membra

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    Well, then the reasonable question would be: for those who have had crashes lasting months or longer, how often have they started from baseline (i.e you were at your personal average level of unwellness, not already extra unwell) and been triggered by one single episode of over-exertion?
  16. peggy-sue

    peggy-sue

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    My worst "crash" was after a 3 month prolonged overdoing under severe stress, while my Dad was dying (in a hospital 70 miles away). I did not stabilise to a new, but lower baseline than I had been at before, for 6 years.

    I have just come home from a 6 day period of big overdoings - travelling a long way to cram as many friends and family members into the short space of 4 days (2 full days travelling).
    I got home early Tuesday am. (this is now Friday afternoon)

    I haven't crashed yet. I will monitor what happens and report. :)

    Normally, I try to ignore it as much as I can. I had a lot of fun and it was very mentally uplifting. I anticipate a bout of depression as part of it (getting happy has its costs:cry: ) But I most sincerely hope it does not happen.

    I generally find resting as much beforehand, taking a carnitine supplement daily while away, and carrying on with the carnitine supplement when I get back really does help to minimise suffering, and I have been doing that.
  17. SickOfSickness

    SickOfSickness Senior Member

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    I would like to see the results if they waited longer between tests... 36 hours, 48 hours, perhaps more.

    Some doctors are bound to say that the results can be faked. The terrible ones who think we want to be sick.
  18. peggy-sue

    peggy-sue

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    SickofSickness said;
    "Some doctors are bound to say that the results can be faked. The terrible ones who think we want to be sick."

    You mean the ones that are already "faking" their results? Possible. They would, I'm sure, expect everybody else to be as deceitful as they are. :p

    However, I don't think these are the sorts of results that CAN be faked, SoS. Honestly! :)
    Valentijn likes this.
  19. urbantravels

    urbantravels disjecta membra

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    It's important to define what information you are looking for and why. Since the two-day exercise test is cumbersome, expensive, stressful, and contraindicated for many people, I certainly don't want and don't expect it to become the standard diagnostic test to confirm the presence of ME/CFS...or at least the ONLY test available.

    A blood test for cytokines after a mild exercise challenge may become accepted as diagnostic. That would be quicker and cheaper and much more widely applicable. (Actually I've no idea how cheap it is to measure what the Lights are measuring, which is, as I understand it, activation of the genes that produce certain cytokines, not the cytokines themselves.)

    Here's one problem though, drawn from my personal experience, that goes beyond the need to diagnose. For a disability claim, they may acknowledge that you have CFS, but refuse to accept that it is as severe as you say it is, or severe enough to prevent you from working. So in that situation, you need some way to objectively demonstrate how much your functional capacity is impaired by the disease, not just the fact that you have it. Being able to measure the severity of disease would also be useful for research. The really tricky bit would be developing a test that shows impairment of functional capacity without requiring the patient to do anything, or a test that "measures" a PEM without provoking a PEM. Unless it turns out that the most severe patients are in a more or less permanent state of PEM, which might be measurable.
  20. Valentijn

    Valentijn Activity Level: 3

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    This is why it's especially important to have this test included in the research. By seeing which patients have the non-deconditioned abnormal response, they can look to see what non-exercise-induced markers are present in those patients. Then every patient can benefit by having the results of a blood test stand in as indicating vulnerability to exertion, versus having to do the two day exercise challenge themselves to prove that they're ill.

    They are NEVER going to take our word for it that exertion makes us sick. There has to be objective, unfakeable, physical testing clearly associated with the quick-and-painless testing methods that we want to be developed.

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