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PatientsLikeMe doing a CFS/FMS survey for Petrie (major psychobabbler)

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Feb 1, 2011.

  1. floydguy

    floydguy Senior Member

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    Yes, I guess that goes along with what do you call the sad sack who graduates last in his med school class? Doctor! Yes, unfortunately they are "real" doctors but most are not practicing "real" medicine.
     
  2. Dolphin

    Dolphin Senior Member

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  3. Dolphin

    Dolphin Senior Member

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    If I recall correctly, patients from ANZMES* were used for one or more of the Moss-Morris/Petrie studies. So not sure all flaws in his research and how he interprets data he/they collect can be put down to that.

    * National ME Group in New Zealand
     
  4. Scarlett

    Scarlett

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    Really shocking - it's all so blas and basic. A simpleton could have come up with those tests, and there's nothing conclusive there! I don't understand the catastrophic thinking thing - if only some of the CFS sufferers displayed catastrophic thoughts (which is understandable given some symptoms), then what about the rest of them? Were they actually normal, cheerful, laid back people who are going through a horrible illness but chose not to make too much of a thing of it, by any chance?!

    Bizarre, and scary.
     
  5. Dolphin

    Dolphin Senior Member

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    By the way, that catastrophic study was subsequently quoted quite a lot.
     
  6. Dolphin

    Dolphin Senior Member

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    They have gotten 1100 responses (i.e. questionnaires) so far!
     
  7. Dolphin

    Dolphin Senior Member

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  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    It's pretty sad to see the thankful trusting responses of some of respondents about how they've been so victimized, but now they are so thankful that someone actually cares about them enough to study them.

    I put my letter and a link to here on the thread. and pm'd one of the people. it pisses me off that these frauds have no conscience.
     
  9. Angela Kennedy

    Angela Kennedy *****

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    Good points. Attribution studies are always very dodgy for reasons like this: and I would say the neurological damage is a particular confounder in these cases.

    Also - well done those who have been bringing this to the Patientslikeme people's attention.
     
  10. Dolphin

    Dolphin Senior Member

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    With the link to this thread, hopefully PatientsLikeMe will have looked at the comments (some of the other people on their forum probably have anyway) so well done everyone.
    Hopefully PatientsLikeMe will be more careful in the future and will also have a close look at how Dr. Petrie writes up anything.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I pm'd the people who had posted on that thread and now there is an active discussion; kind of interesting; a different dynamic than PR- people seem to trust the doctors and researchers. I let them know a little bit of the situation and encouraged them to come check out the PR advocacy forums.

    http://www.patientslikeme.com/forum/show/90352
     
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I'm in an involved discussion with the Chairman of Patientslikeme on the thread. His brother died of ALS and he has good intentions, but needs to be educated. If you can spare a few minutes, pls pop in and join the discussion or 'second' what i have said. Thanks.

    http://www.patientslikeme.com/forum/show/90352
     
  13. WillowJ

    WillowJ Senior Member

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    the other thing PLM needs to know is that ME is not merely a variety of FM. They don't even list Fukuda-diagnostic S&S for CFS. Not as important as staying away from Moss-Morris collaborators, tho
     
  14. leela

    leela Slow But Hopeful

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    Great work, Justin, on all counts!

    Those studies made me want to puke--but oh wait, that catastrophizing and somatizing!

    Seriously, I am amazed 1100 people signed on for the BS.

    What makes me sad (uh-oh--I must be depressed) is that they could not even allow that people who experience disabling symptoms for years on end might, just might, have very good reasons to attribute medical/physical meanings to ambiguous words. And one of those reasons might be that we spend a lot of time educating ourselves and doing research because few serious medical people are willing to do it for us!
    Ack! <tearing out fistfuls of hair> --oh wait, that's hysteria, like Incline Village :Retro mad:
     
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Leela- thanks for making me smile!
     
  16. Dolphin

    Dolphin Senior Member

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    :thumbsup:

    justinreilly,

    Thanks for your thoughtful responses on the PLM forum. Very much appreciated. Sorry I haven't been able to contribute but have a lot on.

    For anyone has read any of Petrie's studies through: it'd be great if you could contribute. In particular, I'm sure there are a lot more quotable bits from some of his papers.

    :thumbsup:
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The upshot of the discussion was that Jamie, the chairman of PLM said the study design was already approved, they'll go forward with it, but that PLM has input into the final paper and they won't let anything shady happen and they'll publish it in full on the website.

    So, time will tell. I think this was a good effort to raise their awareness. It seemed they were totally clueless about the fake 'science' that goes on in ME.
     
  18. Dolphin

    Dolphin Senior Member

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    In the latest PatientsLikeMe survey [on telling people about your diagnosis (I got a PM inviting me)], ME/CFS was down as a separate category from fibromyalgia. This may be as a result of people's recent comments (on top of previous comments I presume some people had made)
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I asked PLM if they had asked the survey participants by which definition they were diagnosed and explained the fake definitions.

    Dr. Wicks replied that no they didn't and that he was sure i'd agree that not asking was the right thing to do!

    He did agree to divide it up by country as a rough proxy.

    I asked him not to include British patients in any data upon which conclusions would be based and also to vet the study with patient experts before publication.
     

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