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A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
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Once Is Not Enough.....by Simon McGrath

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jun 30, 2012.

  1. JAH

    JAH Senior Member

    San Jose

    Thank you for this fascinating post and your thoughtful replies to comments. I hope to see you again on this forum,

  2. WillowJ

    WillowJ Senior Member

    WA, USA
    thanks, Simon, for the great article
  3. Simon


    Monmouth, UK
    All that positive feedback is much appreciated, I may have to write another now... Thanks
  4. Simon


    Monmouth, UK
    $2m NIH grant to attempt replication of oxidative stress finding in larger cohort
    Here's another good example of the shift to replication of interesting findings in CFS research.

    2 pilot studies using neuroimaging and markers of oxidative stress found differences between CFS patients and healthy controls, though the differences with MDD patients didn't reach statistical significance. But now these promising findings are being followed up to a) replicate and b) show specificity for CFS vs Major Depression. This is how good science is supposed to work. Promising pilot -> larger replication (or refutation), hopefully, as in this case, with a more comprehensive design - the authors are checking in plasma, urine and CerebroSpinal Fluid on 40 CFS paitients, controls and MDD patients.

    NIH project reporter
    User-friendly summary of this study over at Research1st

    Thanks to @TomKindlon for tweeting about this
    snowathlete and Dolphin like this.
  5. Simon


    Monmouth, UK
    This is probably the most caustic comment I've come across about reproducibility
    Ouch. It's taken from a recent opinion piece in Nature:
    And Nature announced today that it and other Nature Group journals will bring in a raft of editorial measures to increase reproducibilty by improving the consistency and quality of reporting in life-sciences articles. Looks like reproducibility is here to stay across the whole of life sciences.
    Little Bluestem and Sean like this.
  6. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I would like to make several comments on the original article by Simon, which I think makes some very good points.

    The Deale article which found cbt/get improved physical functional only used questionairres. http://ajp.psychiatryonline.org/data/Journals/AJP/3674/408.pdf

    I suspect the extreme death of funding in CFS and ME research is partly a cause of lack of reproduction of results. Reproducing someone elses results, and especially your own, might be less favoured in an environment of almost no funding. We usually have to compete with many other proposed studies for limited money. My guess is that what is needed is ring-fenced funding for replication studies, to try to promote them happening, as well as funded methods to publish negative or uninteresting results.

    The interesting thing about NK cell dysfunction is not so much the low killing power, but the disturbance in NK cell subsets. Similar subset distrubances have been found in T cells and B cells, with the further issue is that there appears to be a decline in mature B cells.

    An integrated immune surveillance study looking at all of these issues in large numbers of patients and several types of control groups could prove very interesting.

    Psychology, and indeed psychiatry, are indeed in trouble. However, hiding issues and denying everything will only make the problem worse - it needs debate, full disclosure, and very intense analysis of alternatives to fix these issues.

    Of all the disciplines in psychiatry, I think psychogenic attribution of disease is in the most trouble. In every case where a cause has been found for a "psychogenic" illness, it has been found to be physical. Every case. I think our generation will find the same for fibro, CFS, ME, and IBS. Its already happening. How is psychogenic medicine, in its current incarnation, not considered a blight on medical research and the medical profession itself?

    There is a lot online about The Reproducability Project, for example this:
  7. Lynne B

    Lynne B Senior Member

    sydney, australia
    Thanks, everyone. This information has been fascinating, partly because I'm going to check reproducibility myself at the end of May. I actually think of it as testing for a null hypothesis. Not sure of the right wording. A recent paper linking IBS or SIBO with rosacea, suggested that Rifaxin would cure the first as well as the latter. I have rosacea and some sort of IBS, so after an exploratory procedure later in May, I'm going to take a course of Rifaxin for two weeks and see if it makes any difference for me. Very rough and ready kind of replication, I suppose, but I'm using the resources available to me.

    Other readers here have most likely already tested this link, and I'd love to hear their results.

    Cheers, Lynne
  8. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Midwest, USA
    Lynne B Please let us know how it goes.

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