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CDC Conf Call-Follow-up Poll: Would YOU do 2-day CPET if in CDC Multi-Site Study?

Discussion in 'General ME/CFS News' started by waiting, Sep 15, 2013.

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IF you were a CDC Multi-Site Study participant, would you agree to do the *2-day* CPET?

  1. Yes

    92.8%
  2. No -My ONLY concern is the physical toll of a 2-day test (vs 1-day) might be too high.

    1.4%
  3. No- I have concerns about the physical toll AND other concerns (overnight is ok)--see my reply.

    0 vote(s)
    0.0%
  4. No- My ONLY concern is I travel a long distance to clinic and don't wayt to stay overnight.

    1.4%
  5. No- I have concerns about the overnight stay AND other concerns (physical toll is ok)- see my reply.

    0 vote(s)
    0.0%
  6. No -I have concerns about BOTH the physical toll & overnight stay, but nothing else.

    2.9%
  7. No -I have concerns about BOTH the physical toll & overnight AND other concerns--see my reply.

    1.4%
  8. No -I have concerns but they are NEITHER about the physical toll or overnight stay-see my reply.

    0 vote(s)
    0.0%
  1. waiting

    waiting Senior Member

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    This poll is a follow-up to last week's CDC Conference call with Dr. Beth Unger and Dr. Ian Lipkin.

    It is a hypothetical question (unless you actually ARE enrolled as a participant in the study!) about assessing how many among us, IF we were participants in the CDC Multi-Site Study, would agree to take part in a 2-day cardiopulmonary exercise test [CPET] (Stevens Protocol) -- and if not, why not. **The assumption is that if we were in the study, we'd already have agreed to and be signed up for the 1-day CPET.**

    If you participate in the poll, and you vote "No", please consider posting a reply, listing the concerns that would prevent you from partaking in a 2-day test. If you vote "Yes", additional comments are also welcome.
    _____________________________________________________
    More Information:

    Only 2 consecutive days of CPET testing (approximately 8-12 minute test) provide PEM and metabolic data -- data not available in a 1-day test. Dr. Unger outlined her concerns on the call about the hardship a 2-day test would place on patients in explaining the CDC's decision to exclude the 2nd day of testing:

    "The two-day test would require an additional overnight stay for those patients who travel long distances to attend clinic and excludes those who are most severely affected because of the heavy physical toll. In developing the protocol, we strived to find a balance between testing that would yield meaningful data in the broadest representation without placing an unnecessary burden on the patients." [ transcript reference from Jennie Spotila's Occupy CFS blog.]

    As I mentioned on the CDC Conference call thread, it might be interesting for the CDC to see our poll results, too, no matter what they are. My own opinion is that the 2-day test is an imperative. I wonder if the CDC could consider including 2 subsets -- those who do only Day 1 and those who do both Day 1 and Day 2.

    If you are not familiar with the Stevens Protocol (2-day CPET), you can read this Phoenix Rising article by PR member aka "Lannie in the Lymelight", who underwent the 2-day test and described it wonderfully -- with photos of each part of the test!

    Also, see PR member Jennie Spotila's excellent 4-part article series on PEM on CFIDS.org -- especially Part 2 of the Series that describes the results found by using the Stevens protocol.
    jspotila likes this.
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I am voting yes, but do wonder if there would be any compensation for travel or accommodation.

    Sushi
    Nielk likes this.
  3. waiting

    waiting Senior Member

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    Good question. I wonder if there are any PR members who are enrolled in this study and might be able to post the answer?
  4. rosie26

    rosie26 moderate ME

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    I voted yes. But looking back to my severe years it would have been a nightmare having to do the exercise test. !!!
    So so ill.
  5. Nielk

    Nielk

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    I would say a tentative yes. I would need to stay in a nearby place to rest for the night in between and probably a couple of nights after. I would do it though for the science and the possibility of helping thousands others. I could not do it if I was in a crash though.
    peggy-sue and Iquitos like this.
  6. Tally

    Tally Senior Member

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    I think patients should boycott the one day test. It will do more harm than good.

    As far as the two day test goes, I can understand some people are hesitant, but I would do it without a second thought. If done properly it could be a definite proof ME is a physical illness and for me that's worth even a few months of being bed bound.
    peggy-sue, Molly and Sea like this.
  7. Sparrowhawk

    Sparrowhawk Senior Member

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    I voted no -- my additional concerns include that I can't afford not to be able to work right now. I recognize I may be digging myself into a bigger hole longer term trying to continue working but that's just where we are at the moment.

    Just the effort and emotional involvement of going to see Montoya at Stanford took me to a new, lower baseline even after the two weeks it took me to recover from the trip itself. So three or four hours of my life, which was a plus from a diagnostic confirmation standpoint, still put me further behind the 8-ball for the last several months than I was before I went.

    So yeah, I'm chicken about the effects of the two day test when I can't even walk 2000 steps a day at this point, but the main sticking point is that a two day stress test, plus the travel, plus the overnight stay in odd surroundings, might be the last straw causing me to have to stop work (which for the time being, thanks to my understanding employer, I can do from home/bed) and possibly make me completely bedridden again.

    I honor, respect and am humbled by those above who are willing to take part in such research and bear the attendant physical costs. I don't feel like I have that freedom as I have a family to provide for, which is the priority even given my current state.
    peggy-sue and jspotila like this.
  8. Sea

    Sea Senior Member

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    So in your current state Sparrowhawk would you do a one day test? I'm guessing that you probably wouldn't be in a position to be able to do that and I completely understand and respect that decision (or the decision to do one day not two)

    This is not directed at you Sparrowhawk but what you wrote made me think it would be a shame if the poll results are skewed by responses indicating no to a two day test when that person would also answer no to a one day test. That wouldn't help us collect the info we need because I think what we're really looking at here is for those who could do a one day test would you be prepared to do two? I can't see a poll option that someone could choose to say they would do a one day test but not a two day test.
  9. Sparrowhawk

    Sparrowhawk Senior Member

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    West Coast USA
    Fair question, no worries about seeming to single me out -- it's worth clarifying for anyone answering the question about the two day test.

    There's simply no way I could do either one without making a sacrifice I can't make. I know someone who did the two day test but that person was already out on disability and could literally afford to have help hired to do everything needed around the house.

    And I just read Cort's good summary of how ill-advised (trying to be kind here) the one day test approach is anyway, so now I understand why some are calling for a boycot of the one-day test.

    I mean I would love to be surprised that the one day test showed something useful, but I thought the whole point of the two day test is that is the thing that shows the dramatic decline in metabolic/exercise capacity.

    CDC does itself no favors in our eyes when they make choices like this. "Yes, I see where you say there are several directions you say we can pursue that have already shown dramatic potential to highlight causes or biomarkers of the disease. We are going to choose not to pursue any of them, or so hopelessly muddy the waters by test design that specifically doesn't get at those indicators and may in fact discredit them by omission."

    I'm clear that rage and blame are not productive but sheesh! I'm also not the conspiracy type but again, sheesh!

    Finally, I'm sorry if I skewed the test results because you were in fact looking for people only to answer if they would do the one day but not the two day test. I thought it was just a question of two day test, yes or no, and if no, why.

    ON EDIT: If money were no object, and the two day test were restored to the CDC research agenda, I would consider the two day test in the hopes it would help everyone, increase focus on the subsequent research needed, etc. I would not consider the one day test at this point because the rationale given for it makes no sense to me.
    peggy-sue and Sea like this.
  10. waiting

    waiting Senior Member

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    Another good point. I just edited the instructions to include the assumption that in this hypothetical situation, IF we were study participants, we'd already have agreed to and be signed up for the 1-day study (2nd para).
    WillowJ and Sea like this.
  11. SOC

    SOC Moderator and Senior Member

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    I voted yes, but I am not trying to financially support myself. I don't think I could afford to take the chance of a long-term crash if I had to work.

    For me it's not about the physical toll. I'd have done the test when I was bedbound. I'd have found a way to get there because I think it's critical for research, which we desperately need. But.. I have a spouse who would drive me to the test whatever state I was in and who would feed me if I couldn't get out of bed for weeks or months. If my circumstances were different, I'm not sure I could risk it.
    peggy-sue and Sparrowhawk like this.
  12. Antares in NYC

    Antares in NYC Senior Member

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    Voted yes. I have nothing to lose, and I'm looking desperately for a solution or even a small improvement over my current state.
    peggy-sue and Sparrowhawk like this.
  13. Ember

    Ember Senior Member

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    I took special note of this comment by Dr. Snell at the FDA workshop:
    Cort added:
    Voted yes. I would need help in any case if I were to travel.
  14. Molly

    Molly

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    I have traveled to have the 2-day CPET done. I would not participate in a CDC Study for a 1-day test no matter what. A long term relapse compared to a 10-20 year debilitation with no understanding of what is the "Core" pathology is a "No Brainer." For me, knowing early and all about what is developing and spreading to destroy my organs and tissues and creating diseases that I should never have after the first 3-months of mystery disease onset and initial Medical interventions is worth the extended PER. These career ending CDC Anti-studies only serves to bolster the careers of people who design and invest in them repeatedly. They nullify positive scientific integrity and malign the reputations of Physicians who seriously can and do care to help us recover. Yes, It was difficult to get to the test, and I am currently experiencing that deep Post-Exertion-Collapse. It is miserable, but I have lost everything else to this disease and it is well worth the knowledge I also returned with. For Dr. Unger to dig in her heels and deny significant research and successful studies that are intended to find answers is self-serving. Continuing to develop more expensive Anti-studies, is something she and her leadership will have to resolve interpersonally when they have been pushed from power by another generation. They have millions of tax dollars to throw away to discredit scientific studies that help us improve our Quality of Life. That is more of an ethical violation than ]my choice to know why I am ill, my choice to participate in the 2-day complete CPET study. For many of us it is too late to wait one year longer while the CDC acts defiantly against our million-plus suffering and severely ill patient population. The more the CDC develop defiant anti-studies, while we suffer speaks louder of their denial than any perceived peer publication in in an elite scientific journal. It is a mere delusion if Dr Unger believes she can turn up the heat so our lives remain a vapor, (visibly invisible), or that she can she uses her authority to freeze us out by denying the atrocity of the flood of Citizens who are continually affected with this illness. Some see the Research/Treatment dichotomy water as very clear, while others maintain elite control to walk on the water they continue to muddy. The invisible vapors are seeking serious answers, not power struggles, delusions or defiance. We deserve equality with our Health Care and Scientific Research to back it up.
  15. Kati

    Kati Patient in training

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    I am part of the CDC cohort and I would consider NOT performing a 1 day only exercise test.

    Perhaps all subjects of the cohort could consider this option, that is of course if Dr Unger doesn't come to her right mind.
  16. SOC

    SOC Moderator and Senior Member

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    Wouldn't she simply complete the test with different participants -- possibly less well characterized -- who are willing to do the 1 day CPET?
  17. Kati

    Kati Patient in training

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    i don't know SOC.. I am really worried here. I am one who would need to go out of town to perform this test and I would rather do the test properly than half way there with the risk that it doesn't show 'enough'.

    And remember that patients are not necessarily 'characterized'. They are picked from each doctor's office as patients who are believe to have CFS.
    Valentijn likes this.
  18. SOC

    SOC Moderator and Senior Member

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    I'm with you on this. Why do the test half way? The one day CPET may be just as damaging as the two day, so why settle for less data? I'm just not sure that refusing to do the one day CPET is going to improve the research situation. If the chosen patients refuse to participate, what do we think the CDC will do? I simply don't know and I don't trust the CDC to make a decision that's good for us.
    Valentijn likes this.
  19. Kati

    Kati Patient in training

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    The best case scenario would be to have Dr Unger changing her mind and for once listen to the patient's voice of reason. If she is worried about the cost, how about having only half the patients performing a 2days test?
  20. Iquitos

    Iquitos Senior Member

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    I couldn't have said it better, Molly!!

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