1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

Learning CFS: the Lerner Antiviral Treatment Trial Succeeds

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 24, 2010.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,591
    Likes:
    5,207
    It is a long time since I looked at this but it seems to make sense. As far as I can see, what they really needed to have was a "rollng" mean - a baseline mean column for the subset that remained at each point.
  2. WillowJ

    WillowJ Senior Member

    Messages:
    2,943
    Likes:
    2,376
    WA, USA
    yet bad psychogenic papers get published all the time, even in the Lancet and what should be a sound journal, BMJ, and researchers have indeed complained that they cannot get published. I do not beileve there is no bias in big publications in general. That's the whole reason the J CFS was born.

    On the other hand, I also believe CFS studies can get published in smaller papers. There is no reason why Cheney has to publish in Science or JAMA if he doesn't have something truly ground-breaking, but there is also no reason why he shouldn't be able to publish in Med Hypoth. and I cannot take him seriously when he (evidently, and now by your report) chooses not to try. I would much rather take him seriously because I think he could have a lot to offer, but he has to publish, even in an insignificant journal.
  3. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    532
    You have to realize that the "psychological" ME/CFS papers are written by teams of people that have a several million-dollar budget and ALL of MOST of what they do is research. So, for what they DO publish, it's not up to par.

    Dr. Lerner is one single practitioner with an office in Michigan with neither the money/ staff/ time to do research. He also had CFS but was able to recover due to self-administration of antivirals. He's in his 80s, I believe? I have to respect his 2 decades of work in CFS and also that he put this data out there for us to see, even if it is imperfect. An easier choice, which many have taken, is not to publish at all.This paper was put together with volunteers, some of whom also have CFS.

    While I believe the bar for CFS research could be raised, I also think it's partly up to people with skills in the CFS community to raise it. So I would suggest that anyone who has the experience offer their constructive criticism and/ or help as possible.
  4. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    Maybe you're confused because this is not "an example of CFS research by the best CFS researchers". This is a retrospective study of a collection of clinical data. It is not "research" in the commonly accepted sense. To suggest that it is an example of the best CFS researchers have to offer is naive at best.

    This review and analysis simply looked at the clinical results of many years of one clinical physician's practice. It is not like formal research where the experiments are planned, the patient set carefully selected, the experiments planned, etc. As such, it would not typically be published in a major journal. A paper like this is more typically written for the benefit of other clinical practitioners -- to demonstrate the clinical results of a certain treatment plan, for example.

    We have asked that successful clinical practitioners report the results of their treatment. Then we criticize one for doing just that because it wasn't something else. :confused: And we want clinical physicians and medical researchers to help us?

    People may not like this review and analysis, and that's fine. But judge it for what it is intended to be, not for what it isn't.

    The fastest racehorse won't win a dog show.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,150
    Likes:
    4,408
    australia (brisbane)
    I agree with you sickofcfs, i thought this study was just a collection of his data on his cfs patients he had treated with antivirals, not a typical placebo controlled type study.

    cheers!!

  6. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA

    Fine. Complain about the statistical methodology all you want. That, at least, is a legitimate scientific argument people can bicker over. :)

    Not a good example, then. This type of paper is not typically published in the better journals.

    Maybe you don't, but others do.

    I'm not up to arguing the statistical analysis of the data, nor do I necessarily want to. I never thought of this as a major paper, so I haven't investigated it in any great depth. You could very well be right about the statistical analysis. If so, you might want to write to whoever did the statistical analysis for the paper and ask him the tough questions. :)
  7. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    Seems like a reasonable plan -- if it concerns you, find some qualified people to help gain perspective. :)
  8. Hope123

    Hope123 Senior Member

    Messages:
    1,141
    Likes:
    532
    The words "Original Research" doesn't mean that it has to be a double-blind randomized placebo-controlled trial but rather that it's not a review of others' work or commentary on the state of a particular medical illness, etc. So observational/ epidemiological/ large database analysis/ etc. studies are also considered "original research."

    I think it is easy to criticize research but what humbles many people is when they try to do it themselves and realize it's much more complicated than anticipated. Even the best laid plans go awry as medical research deals with people and is not lab-based research, which is also not perfect but allows more control of factors. I've worked with some very smart people in the past and what made them even more amazing was how humble they were and how willing they were to learn from others, past studies, etc.
  9. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,238
    USA
    Try to remember that unlike the UK CBT/GET pushers, Dr Lerner is NOT a gov't funded researcher. He's a clinical practitioner.
  10. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,612
    Likes:
    1,241
    Florida
    I just found this. Great article. Super doctor.

    Dr Lerner said he thinks the heart is causing pots. I have a lbbb and pots and wonder how many others have heart problems.

    This along with bodywide muscle spasms were my first symptoms of cfs. I had a massage therapist coming to my house
    3 times a week and she couldn't get my muscles to relax.

    This was paid for by my insurance company and prescribed by a chiropractor. So it wasn't just for fun.

    Only after eliminating my food intolerances, esp gluten, are my muscles able to recover from exercise.

    My ekg is the same after 8 years gf. Rats.

    The damage was allowed to continue for 15 1/2 years post cfs onset. So disappointing but no surprise.

    Bottom line, antivirals probably won't help me now. And maybe wouldn't have in the first 15 1/2 years either since I was still eating gluten.

    tc ... x

See more popular forum discussions.

Share This Page