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CDC's BAD NEW STUDY

Discussion in 'Latest ME/CFS Research' started by mindykitei, Sep 25, 2013.

  1. mindykitei

    mindykitei

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    CDC's head of CFS research Dr. Beth Unger is slated to do a problematic one-day ME exercise study called the Cardiopulmonary-Exercise Testing, instead of the two-day test favored by most patients and ME-educated researchers.

    What’s wrong with Unger's study--and how to stop it, at CFS Central.

    Mindy Kitei
    CFS Central
    http://www.cfscentral.com/2013/09/cdcs-two-day-exercise-test-not.html
    Jarod, leela, rosie26 and 8 others like this.
  2. Legendrew

    Legendrew Content team

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    I have to say i'm not a fan of the attempts to stop research like this. From a personal view i'd expect some change in a one day exercise test - perhaps not as extreme but how do we know if we get the pitchforks out so often? Perhaps it would be best to just let the researcher know your opinions that a 2-day test is considered more appropriate and leave it there. If a repeatable abnormality could be found during a one day test it'd certainly make this form of testing a lot easier. Certainly it is a little silly to call it a bad study for this reason.
    Firestormm and Marco like this.
  3. Gijs

    Gijs Senior Member

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    I think the tone in your letter is inappropriate. I would not reccomend patiënts to send this letter.
  4. peggy-sue

    peggy-sue

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    I'd only expect to see a change after one day is somebody who has been ill for less than a year, so I'm afraid I disagree with you, Legendrew.
    This study will result in yet a.n. other "published, peer-reviewed article "proving" that we are all just malingerers".

    It will state that; "no evidence for PEM was found."

    It will then get included in some meta-analysis, giving rise to yet a.n. other publication which will state that "No evidence for PEM can be found."

    and so on
    and so on...

    Don't make the mistake of thinking that only one publication will arise from this. That's not the way the BPS school of recursive citations works.
    Mesurfer, Tally, beaker and 4 others like this.
  5. Iquitos

    Iquitos Senior Member

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    Yes, Unger learned how to do fake research under Bill Reeves. Now that we have the internet, she has had to become more subtle with the government's pretend program.

    But that's all it is. Pretend. It is not designed to do anything for the health of patients. It is designed to be able to "prove" what they've been propagandizing all along: mecfs patients are exercise phobic, deconditioned malingerers.

    And to say "Look, we're spending money on research for you ungrateful wretches."

    In fact, it's a waste of money, especially now when research funding is so poor. And it wouldn't cost more to do it right, if they really wanted to find the answers to scientific questions. It's politics as usual.
    Mesurfer, Sidereal, peggy-sue and 3 others like this.
  6. Doogle

    Doogle Senior Member

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    @ Legendrew and Gijs. The CDC has ridiculed this disease from the very beginning. I've waited 25 years for them to do serious research for this illness, and I'm still waiting. I don't expect to live another 25 years. The AIDS epidemic has shown that if patients don't take things into their own hands they're not going to see results they want. Yes, we're terribly handicapped to have to fight for our very lives, but if we don't no one else will. If we want our lives back we need to get involved in the research in every way we can.

    Do you think Unger gives a shit about our illness along with the pain, isolation, destitution, and the other shit that goes with it? She gave a great lecture a year or so ago about how happy she was to move to her nice new comfy digs the CDC built. My suffering doesn't impact her day to day life, her job security, her vacations, or her government pension. If the CDC study is flawed her life goes on, and she has more job security as another study will have to be conducted. I don't think she is a mean person, BUT you and I need results, not the same bullshit that has gone on for so long.

    Maybe there would be more urgency if you had known the 20 or so PWME/CFS I have personally known that have died or committed suicide, or come to the realization that a cure is probably not going to occur during your lifetime, or maybe you have and just can't respond to the situation.

    All I know is that criticizing people for their efforts to change the status quo is not going to get us well.
    Mesurfer, leela, Tally and 5 others like this.
  7. ahimsa

    ahimsa Senior Member

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    If people disagree with the specific wording in that sample letter, but still agree with the basic premise, they can change the wording. There's a whole range of options to choose from. The patient could express concern without phrasing it as a demand to stop the research.

    The point is that many folks think that this kind of test might be useless. Or even worse, the results of a study that uses only a single day test, and not a repeat test, might label ME/CFS patients as malingerers who are deconditioned and simply need more exercise.

    I thought Mary Schweitzer's blog post about this was quite helpful - http://slightlyalive.blogspot.com/2013/09/why-cdc-must-use-two-day-cpet-testing.html
    leela, MeSci, Tally and 3 others like this.
  8. alex3619

    alex3619 Senior Member

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    Given the decades of inaction, messed-up studies, poor diagnostic criteria, failure to adequately debate key issues or engage with the patient community, low research budgets and general ignorance from supposed researchers, both inside and outside the CDC, how can making "threats" of valid patient advocacy be a problem?

    By the time a cure comes along I probably will have spent my entire adult life too sick to have a life.

    We need people to understand that dubious approaches, and bad justifications, and ignoring the science will not be tolerated. That advocacy will continue. That we are unhappy with current administration in these areas. That if further poor quality research is produced we will not accept it and will be very vocal about it. If they are not part of the solution they can get out of the way and do something else - it would be better than continuing to mess things up.

    We now have good research leads, and good evidence for certain biological abnormalities, including using the two day CPET test. If this test turns out to be inappropriate let us at least do the science that shows that. If it turns out to be a key test, then nobody can ignore it without looking either incompetent or with a biased agenda. (I said something much less flattering in my first draft, but decided to keep this cold and technical.)

    Playing nice is only good if the other side is engaged and listening. People who play in politics and play nice all the time inevitably lose. While there are definite scientific issues here, there are also economic and political ones. We make a huge mistake if we ignore those influences.

    So far as I am concerned a 2 day CPET test is not negotiable. A study that ignores this and tries to claim to be using the most advanced science is in reality a joke. (Oooops, that was a bit less cold and technical.)

    Alex.
    Mesurfer, leela, MeSci and 9 others like this.
  9. alex3619

    alex3619 Senior Member

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    We have a model for what happens when a study ignores the science and avoids anything that might produce objective evidence that would derail their hypothesis: the PACE trials. Objective measuring via actometers was dropped. This left a six minute walking test that showed pathetic results where their success would count as severely disabled if done by other researchers, and subjective SF-36 results. Its acknowledged that the SF-36 results in CFS do not match objective measures in many studies, but they still prefer their subjective measures that they can use to reinforce their unproven hypothesis.

    If the 2 day CPET test is not used then it might not be the CDC who uses it to advance whacky theories like we see from the BPS crowd. Others will use that data. So even if the CDC is doing everything in good faith the outcome could still be bad for the patient community and the science.
    MeSci, Tally, Artstu and 5 others like this.
  10. taniaaust1

    taniaaust1 Senior Member

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    Bad studies are the whole reason why the GET and CBT crap is pushed onto us. I think its highly important for this study not to go ahead in the manner planned for this reason as it WILL be used by others to support that we arent really all that sick. It is already known that we need 2 day testing to show up abnormalities well in those who will be in the study. Push we want more research but we want it to be good research. (please think about what message we are sending out when people hear we are trying to stop research, its working against what we need to be pushing.. We need to be constantly focused on "we want more research, good research).

    I personally can see issues thou too if we are calling for this and that study to be "stopped" as this will too be used against us when we are crying about the lack of studies being done into ME/CFS , we will end up hearing "there is not much research being done into ME/CFS as they (meaning us) keep stopping the studies" and we will then be blamed for the lack of research going on. There are people out there who would love to have an excuse like that about why there isnt much research being done and why much funding isnt put into ME/CFS, it WILL be used against us,some people love to blame those who have ME/CFS too.

    For these reasons I dont think it is a good idea for calling for studies to be stopped (that could be playing in certain peoples hands), it would be better to make a big outcry about the bad studies before they happen and keep pushing to try to get the study procedures changed. Keep up protesting about the bad studies the whole time are being done, keep calling for them to be made into suitable studies.

    Even if that doesnt work and the bad studies arent altered so they are better, at least then if we've kicked up a big fuss over them before they went ahead about them being bad studies, at least then we can still point out that we knew they wouldnt show up much (or anything) as they were done wrongly, we could use that to support that we were right and that 2 day testing like we were calling for was needed and slam those who are wasting research money on bad studies
  11. Iquitos

    Iquitos Senior Member

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    If we don't call for bad studies (fake research, redundant research) to be stopped, our silence gives consent. I think we have every right to demand these fake studies be stopped because we and/or our loved ones are taxpayers and it's our money that is being wasted on needless B.S. like this. Not to mention our lives that are being wasted.

    I've been "nice" while CDC used research money earmarked for mecfs research for "more important" diseases like measles and polio (both of which have treatments and their causes are known). I've been nice while Bill Reeves spent all the research money on mind/body studies, while overseeing the Viral & Riketsial Diseases branch of CDC ?!? with Beth Unger as his sidekick. And Suzanne Vernon (CAA) as one of his "research" buddies.

    All being nice has got us is one more sucker punch. It's time for no more nice guys!!!
    Valentijn likes this.
  12. mindykitei

    mindykitei

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    I was actually not asking for the exercise study to be stopped. My post on CFS Central talks about demanding that the CDC change the phony one-day exercise study to a two-day study. If patients don't speak up, the one-day study will remain, and the findings--Dr. Chris Snell has written in his papers on exercise and ME--will show that patients are just deconditioned and the prescription will be exercise. Is that what you want, Legendrew? Because if the study stays as is, that is what's going to happen. That's why CDC is doing it this way--they want it to show that the patients are deconditioned, not sick. Who's going to allocate big research dollars to patients who are deconditioned?

    Patients have been waiting for good research for 30 years. How many more years should they wait? In my view, as Iquitos says, patients have to stop being so nice, or they'll never get any good studies or treatment--and they'll never get back their lives. It's very frustrating to watch so many patients continue to be their own worst enemy. You have to demand good research or you'll get bad research and psychological nonsense studies. Fight, or you'll end up with no life and no help. That's what the AIDS activists found out decades ago. I just don't understand ME patients' reluctance to demand good studies and better treatment--especially when it comes to CDC, an agency that has treated patients' abominably for three decades. I just don't get it.
    MeSci, ahimsa, Sea and 5 others like this.
  13. alex3619

    alex3619 Senior Member

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    mindykitei , I agree with you that we need this fixed not stopped. The kind of study they are doing could be very useful, but not if the number one most useful test is ignored. The data needs to be as complete as possible from as thorough a range of tests as feasible. Not including a 2 day CPET test is abandoning one of the best research tools.
    leela, MeSci, ahimsa and 1 other person like this.
  14. Andrew

    Andrew Senior Member

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    Here's the letter I sent. I was trying to decide between a letter that attempts not to offend. I decided to let them know what I really think. I don't see why I should have to worry about hurting their feelings when they don't worry about ruining my life.

    Chris, leela, MeSci and 6 others like this.
  15. peggy-sue

    peggy-sue

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    I'd replace
    "The following links serve as a bibliography for what I wrote above."


    with
    "References:"

    or simply
    "the following links serve as the bibliography"


    And in the first paragraph, it would be better to loose the last sentence, (which is a repeat of the statement in the previous sentence)

    "and so it’s essential to repeat the test on the next day."

    It could be replaced with;

    "which will not be observed until the second day"

    Hope this helps a little. Ignore me if you like.:thumbsup:
  16. mindykitei

    mindykitei

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    Andrew,
    "I don't see why I should have to worry about hurting their feelings when they don't worry about ruining my life" is the best line EVER.
    leela, MeSci, Iquitos and 3 others like this.
  17. alex3619

    alex3619 Senior Member

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    I agree with Mindy. That's a very nice sentence.
  18. Andrew

    Andrew Senior Member

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    Thanks for the suggestions. If I had known I could get feedback, I would have posted before sending. But too late now.

    I urge everyone else to send an email. Numbers count.
    Tally likes this.
  19. peggy-sue

    peggy-sue

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    Don't worry. :)
  20. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    or to put it another way:
    All together now! :)

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