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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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UPenn talk: "New Frontiers in Treating and Managing Depression and Chronic Fatigue"

Discussion in 'General ME/CFS News' started by Dolphin, Feb 9, 2010.

  1. Dolphin

    Dolphin Senior Member

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    ("Not important" as I think this won't be of interest to nearly everyone. The fact that he shortens CFS to "Chronic Fatigue" makes me suspicious)

    http://www.upenn.edu/almanac/volumes/v56/n21/hr.html

     
  2. gracenote

    gracenote All shall be well . . .

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    Here is an abstract to one of Jay Amsterdam's papers.

     
  3. Dolphin

    Dolphin Senior Member

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    Thanks for that.
    I'm afraid I've got a bit cynical about subjective outcome measures in our condition. For example, if people are slightly "high" from the SSRI, they might rate symptoms as less severe than they really are.

    Or similarly, if they were depressed i.e. at the start (this group was suffering from major depressive disorder along with CFS), they might have rated the symptoms as worse than they really were.
     
  4. Koan

    Koan Be the change.

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    Grace & Tom,
    I wonder if we are giving this paper extended life by publishing it here? This is something I really don't understand. Who do we serve when we put a paper like that out there. There is nothing that any but those with ME would take as being anything other than a very reasonable peer reviewed paper. Do we really help ourselves when we publish them? I'm trying to understand the internet in enough depth to be able to answer that question but I learn sloooowwwwly.
     
  5. Dolphin

    Dolphin Senior Member

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    I have seen instances of this alright. Although research papers are sort of immortalized at: http://www.ncbi.nlm.nih.gov/pubmed/ and other databases.
     
  6. gracenote

    gracenote All shall be well . . .

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    Dear Koan,

    You bring up interesting and important questions. "Who do we serve when we put a paper like that out there? . . . Do we really help ourselves when we publish them?"

    Anyone wanting to know about research regarding CFS will continually come across research such as this. Hundreds of "reasonable peer reviewed papers" are published annually. Students, doctors, and researchers are drawing from these sources. They look very convincing on the surface. On the other hand we, as patients, may not come across as convincing if we don't understand what these "reasonable" papers are saying. We can dismiss them as rubbish, but our opinions will hold little impact in the face of such incredible "evidence" if we're not understanding the basics of the research. We know that so many of these studies do not correspond with our personal experiences of ME/CFS, nor of the more in-depth research provided by doctors and others who have followed us as patients or have been ill themselves. The studies we value are few and far between.

    That this forum has become so easily accessible to anyone who can google is a concern to me. However, my intent is to contribute to our community understanding of what kinds of research is being funded and granted credibility in numerous peer reviewed journals. Is it not to our benefit to be fully aware of what is being read and taken as representative of our disease? Of the kinds of studies being carried out? Of the kinds of questions that are being asked?

    I do think that when I post such an article, it would be helpful if I were to provide a context and perhaps an opinion as to why I think a particular article is worthy of our attention. However, I'm sorry to say, that that requires of me a little more brain effort than I usually have available. I have left the interpretation to the readers of the post. Perhaps that is adding more confusion than clarity which you may be suggesting.

    As to understanding the profound power of the internet and the force that Phoenix Rising is becoming, that is all a bit beyond my comprehension. My intent is to benefit those of us who struggle with this disease and bring information that may broaden our understanding. How this impacts on a larger scale is something I don't know how to reckon with.

    I am open to being told that this is not the appropriate forum for this type of posting. But then I would ask, what would be the appropriate forum?

    Ever learning,

    Gracenote
     
  7. Koan

    Koan Be the change.

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    Hi Grace,

    I don't know what the implications are, at all. One of the things I am presently trying to do, in my own agonizingly slow fashion, is figure out how to use the internet to spread messages and how to use it to limit the spread of messages. You know, how what we post reflects in Google hits, how much exposure certain ideas get and how they get it... that kind of thing. Things I don't really understand. Is it worse, for instance to post just a link or the entire text because it gives the article "hits". I don't know these things but I think I should. You may well have a better grasp of it than I do because I have none at all! It just worries me. For instance, perhaps if we post an article such as this we should surround it with dissenting opinion or set it up in such a way as to diminish the impact. More effort than most of us can manage, I know, but just giving it space leaves me feeling worried. Again, I stress, I don't know enough to say anything more than it concerns me. I truly don't know if it's a problem.
     
  8. gracenote

    gracenote All shall be well . . .

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    A lot I don't know. I found this particular article on Google Scholar. If I remember right, there were many, many listings for it. I can't imagine my posting it here will give it much more visibility. But also, do we stop trying to be a community here, or alter our behavior on this forum to fit what might happen out there?

    At what point do we stop serving each other because of our concerns of the world watching and become irrelevant to our own needs?

    I'm open to your thoughts. This is all new to me. I do worry when Cort purposefully bumps Phoenix Rising to the top of the Google heap. I feel watched and self-conscious. I don't want to become self-censoring in an unhelpful way.
     

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