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ME/CFS: A disease at war with itself
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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. Lake

    Lake

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    Galle, Sri Lanka
    I would absolutely do the two-day CPET test. Even knowing that there would be severe payback or relapse. I already can't support myself financially and have to live with my parents. I'm 38 years old and have been sick (primarily housebound) for the last 8 years and I know we really do need some game-changing results to move research along at this stage.

    I think it's appalling that they're not doing the 2-day CPET test as part of this research and the reply and excuses given by Dr Unger are just not credible. Why can't they make the 2-day CPET test an optional extra? At least that way any patients who are enrolled and actually do want to do it can and this research opportunity can be maximised. Patients are already giving so much to be involved and not doing the 2-day CPET test is not just a wasted opportunity but might actually make much of this research useless or even harmful to the CFS/ME patient community at large. Unfortunately the CDC is starting to look like they're giving us patients the run-around again. Not happy about this at all. :mad:
     
    peggy-sue, Sasha, Iquitos and 5 others like this.
  2. ixchelkali

    ixchelkali Senior Member

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    I absolutely would. If I'm going to participate in a study, I want it to yield accurate results, and in ME/CFS that means a two-day test. Post-exertional malaise is a hallmark of the disease; that's when the real abnormalities show up. Research that doesn't take that into account is a waste.
     
  3. Kati

    Kati Patient in training

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    I got more votes by sharing on FB. i think this is worthy of doing and then sharing with the involved parties.
     
    WillowJ and waiting like this.
  4. waiting

    waiting Senior Member

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    That's great, Kati. Thank you for doing that. I plan to give it some more time (after it appears the voting has ended) and then send the results to CFSPCOCACall@cdc.gov and also to Dr. Unger. I think in addition to the poll results, everyone's comments are valuable. Thanks for participating, PR members!
     
    SOC, Nielk and Kati like this.
  5. Nielk

    Nielk

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    Queens, NY

    Thank you for doing this, waiting.:)
     
    Kati likes this.
  6. SOC

    SOC Senior Member

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    I need to amend my comment to reflect that we are now distinguishing between doing the one day and the two day CPET. The one day test is risky enough that my comment above applies to the one day test as much as to the two day test. As I already said, some people who are managing to work can't afford to risk any maximal exercise test and the resulting crash -- even the one day test.

    Given that one is already participating in a one day exercise test for research, I can't imagine not wanting to do the two day test since it provides highly significant additional data. The damage is already done with the one day test.

    Again, I would certainly do the two day test rather than the one day test for research.
     
    peggy-sue, Sparrowhawk and Kati like this.
  7. shrewsbury

    shrewsbury member

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    I voted yes and have shared. I would love to see the results for the 1day test. I would vote NO, I would not take it as a stand-alone test it does not provide much info on health of PWME and can cause PEM, and perhaps extended relapse. The risk/benefit is not worth it while they are for the 2 day test. Is there any way of adding another poll on the 1day test? It maybe could be a 2 response yes it would provide meaningful data that is worth the risk of PEM and/or extended relapse. OR no as I described above. Oh - and perhaps the kicker would be a 3rd - I would not take the 1 day test, only the 2 day. And then I guess to be fair, a 4th would be necessary of I would take both tests. And 5th, I would take neither test.

    Obviously I haven't thought this through - but think the idea a good one. I'll leave it up to you as am rarely on the forums, and little online these days. Thanks for doing the original poll!
     
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Midwest, USA
    I voted Yes on the, perhaps incorrect, assumption that I would not suffer long-term damage. I share Nielk's concern that I would need one or more nights after the tests before I was able to travel.
     
  9. Keela Too

    Keela Too Senior Member

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    N.Ireland
    I would only do an exercise test if it were a two day one, and if it were part of a scientifically evidenced biomedically based trial.

    I would not do any exercise test (one or two day) without good reason because of the risk of setting my health back for an extensive period of time or indeed perhaps permanently.

    Good reasons for doing a 2 day exercise test might include:
    - Scientific evidence based biomed study;
    - To provide evidence for benefits/insurance BUT only once all other routes have failed (I don't think a potentially harmful test should be promoted by PWME for proofs. It's a bit like the old witch dunking chair thing - should we need to risk our health to prove our health status? Not a good idea in my view.)
    - Personal curiosity - although in my case I am not curious enough to do the test unless I was part of a trial (as above).
     
  10. Snow Leopard

    Snow Leopard Senior Member

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    Australia
    Interesting results on the poll, kind of goes against the (already disproven) ideas about exercise phobias being associated with ME and CFS.
     
  11. waiting

    waiting Senior Member

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    Last call for voting in this poll! I'll send the results to the CDC on Wednesday.

    Thanks, everyone.
     
    Kati and SOC like this.
  12. Ruthie24

    Ruthie24 Senior Member

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    New Mexico, USA
    Have already done the two day CPET so know full well the toll it took on me and the level of PEM I experienced for weeks afterwards. Would gladly do it again for research purposes to show the dramatic change that was demonstrated between day 1 and day 2. Personally I needed to see it on paper or I never would have believed it myself....even though my body had been telling me for years that it was happening.

    With a one day test it would have only shown that I looked "slightly deconditioned". THAT is not what we need researchers to be seeing!!!! The unique result of dramatic changes in VO2 at AT, VO2 max and work produced (as measured in watts) were startling. THAT'S what the researchers need to be seeing! Then they need to figure out WHY it's happening.

    Like others have said, I've lost my ability to work and have a spouse who is supportive and can help me get to the test etc, so I have the "luxury" of being able/willing to participate and have weeks/months to recover. :rolleyes:
     
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  13. Keela Too

    Keela Too Senior Member

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    For what it;s worth, I find I have the biggest effects 2 days after over-exertion rather than just one day later. I suspect this is typical of many PWME.
     
    MeSci, peggy-sue and Little Bluestem like this.
  14. waiting

    waiting Senior Member

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    Here's the text of the email I just sent to HHS and CDC: (Note: the poll results did not copy properly here so I just put an indicator for PR readers. In the actual email, I inserted the poll results.)

    Subject: Please consider poll results from Phoenix Rising that indicate 93.3% of our members (international ME/CFS patients) would agree to the *2-day CPET* if they were in your CDC Multi-Site study
    --------------------------------------
    To: HHS Secretary Kathleen Sebelius,
    HHS Assistant Secretary for Health Dr. Howard Koh,
    CDC Director Dr. Thomas Frieden,
    CDC Acting Chief (CVDB) Dr. Elizabeth Unger,
    CFSAC.

    Many ME patients and advocates have expressed deep concern over the CDC's decision to conduct only a 1-day CPET as part of the CDC Multi-Site Study. I think I need not reiterate our concerns here. However, on Phoenix Rising, a patient forum, we held a poll to see if members of our community have the same concerns Dr. Elizabeth Unger cited in the recent CDC PCOCA conference call as the reason for not conducting the "gold standard" 2-day CPET (8-12 minute tests):

    (1) the additional physical toll on patients of a 2nd day of CPET testing and;
    (2) having to stay overnight for those patients who must travel a long distance to clinic.

    The poll results, after 11 days, currently show that 93.3% of our members (56 of 60 votes) would agree to do the 2-day CPET. You can see the full results below. I believe the poll results are representative of our patient population (of those who would be prepared to participate in the 1-day CPET at a minimum, which they would be doing if they were enrolled in the study).

    Our members also included comments that would be worthwhile reading for you at this link: http://forums.phoenixrising.me/inde...-2-day-cpet-if-in-cdc-multi-site-study.25286/

    I implore the CDC to reconsider their decision and not lose this important opportunity to conduct a 2-day CPET in the Multi-Site study.

    Many of our members have already done the 2-day CPET at Staci Stevens' lab in California or at Dr. Betsy Keller's lab in New York. There is no other way to obtain this valuable data for our patient population.

    Regards,
    "Waiting"
    ----------------------------------
    Poll question: IF you were a CDC Multi-Site Study participant, would you agree to do the *2-day* CPET?

    [poll results captured yesterday, Sep 25 2013 were inserted here]
     
    SOC, Sparrowhawk, Sasha and 3 others like this.
  15. Kati

    Kati Patient in training

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    Thank you waiting, that's awesome. Please let us know if there are replies.

    (Other than automatic email replies like Sebelius has!)
     
    WillowJ and Little Bluestem like this.
  16. Sasha

    Sasha Fine, thank you

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    Well done, waiting - great initiative and great piece of advocacy. :thumbsup:
     
    peggy-sue likes this.
  17. peggy-sue

    peggy-sue

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    I voted yes, but I would not be willing to do a one-day trial at all.
    There is no point in making myself ill for a study which does not measure how ill it makes me; which will not contribute to knowledge about the disease;
    and which will only serve to "prove" I am not ill at all.

    I would be happy to undergo a couple of months of PEM to take part in the 2 day test, which would show the true result of exercise, for the sake of all of us who suffer.

    I would cope with it for something as important as this.
     
    MeSci, Sasha and Keela Too like this.
  18. Sparrowhawk

    Sparrowhawk Senior Member

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    West Coast USA
    Really well done on this, waiting -- thank you for your efforts on behalf of this community.
     
    WillowJ and peggy-sue like this.
  19. waiting

    waiting Senior Member

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    Thanks, everyone. We all participated in this one. It's so great that PR has this poll tool. I will definitely post any replies I receive.
     
    Sasha likes this.
  20. WillowJ

    WillowJ Senior Member

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    There was a point in time when i would have done a two-day test (when I had better function). I would never do a one-day test, ever, because that's not necessarily sufficient to show what is wrong in my disease. (I think I'd fail the first test, but it wouldn't be specific to my disease).

    At this point I wouldn't do any CPET testing, even the proper kind, because I am just not healthy enough to risk a long-term collapse. Any deterioration and I'd be bedridden or worse.

    (so I didn't vote the poll because I wouldn't be enrolled in the study--not the exercise part because I'd refuse, and not any part because I can't get to any of those clinics. I can barely get to clinic in my own town, or sometimes cannot get to clinic in my own town)

    Still I would prefer the 2-day testing were offered for those patients who are healthy enough to do it, and research continue to look for ways to distinguish patients like me (who cannot do exercise testing) from patients with other diseases, and document post-exertional relapse in a scientific way in patients like me.
     
    peggy-sue and rosie26 like this.

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