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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. Dolphin

    Dolphin Senior Member

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    I just wanted to post my frustration somewhere about the following.
    I've lots of things to be doing so probably won't do anything more than posting this message.

    I'm a member of PatientsLikeMe.com
    I got an invitation to fill out a survey. I ignored the first message but had a look last night after the second reminder. Once I saw Petrie, I'm fairly sure it's going to be trouble but I admit I didn't go any further.

     
  2. Dolphin

    Dolphin Senior Member

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    Some Petrie abstracts

    I'm not going to look at full papers but hopefully these abstracts will give people an idea of his sort of views.

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    Full Free text: http://jnnp.bmj.com/cgi/pmidlookup?view=long&pmid=8778249
    or
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC486357

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  3. Emmanuelle

    Emmanuelle

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    I'm generally a very peaceful person, but the truly idiotic conclusions to these studies make me want to ..!&^$#*!@&$^#@!!!! They're very UNSCIENTIFIC and really STUPID!!! I'm really angry that supposedly educated, intelligent people can do this kind of "Study" and make sweeping generalizations and conclusions about an illness that they clearly know nothing about except their archaic, preconceived ideas ... It's so dismissive. Thank God we have each other, and that there are a few researchers and doctors who believe us and know what we're going through and that IT'S NOT ALL IN OUR HEADS! Whew ... Thanks for letting me rant. Now I can go back to being a peaceful, loving, spiritual person ... ; )
     
  4. Enid

    Enid Senior Member

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    Don't tell me the Psyches are still at it !. B----- the lot. Ignore it.
     
  5. ukxmrv

    ukxmrv Senior Member

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    Not surprised you are angry and frustrated. How many people on that site have completed the survey without doing the basic research that you did?

    Professor Wessely visited New Zealand in the 90's. He had a warm welcome at Auckland Uni. Sounded like he was on a sabbatical. Even interviewed on their National Radio. Introduced a lot of bad ideas to NZ.
     
  6. Sherby

    Sherby Sherby

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    One of my 101 things to do before i die must be to---Smack a psychiatrist in the teeth. Arhhh
     
  7. Dolphin

    Dolphin Senior Member

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    Don't forget some psychologists (he's a psychologist).
    (In case any is confused. A psychiatrist has a medical degree and then specialises in psychiatry. A psychologist doesn't have a medical degree (unless they do!).
     
  8. Sherby

    Sherby Sherby

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    Which is worse, i don't want to get the wrong one before i go to heaven?
     
  9. Dolphin

    Dolphin Senior Member

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    Hard to say.
    Psychologists don't have prescribing powers generally nor can they request test generally so they can spend a lot of time thinking about nonpharmacological approaches and psychobabble.
    But some, particularly some with ME, can be good "defenders" for the cause. I think for example Leonard Jason and Ellen Goudsmit have done some good work and I've learned a lot from their writings.

    Psychiatrists do have prescribing powers and could request tests but often seem to ignore a lot of medical knowledge.
    So some can be interesting but a lot are also big trouble. And they can have more status.
     
  10. floydguy

    floydguy Senior Member

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    Oh I thought Psychologists were people who are so screwed up they they went into Psychology hoping to figure out why they are so dysfunctional and Psychiatrists aren't bright enough to be real doctors.
     
  11. Dolphin

    Dolphin Senior Member

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    Well perhaps there is a grain of truth in some of that, at least for some people. For example, I've got the impression that quite a few psychiatrists got lost in medical school and don't really know a lot of the biology and the like; specialise in psychiatry and you can get away with not really knowing it. Maybe that's unfair, I don't know.
     
  12. Desdinova

    Desdinova Senior Member

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    I too often feel that way as well. Unfortunately I know that we shouldn't and can't ignore this or accept it. I'll admit I don't know what we can fully do about it. But again I do know that we can't continue to accept this. The Philosophy that the Psychiatric lobby spews in regards to CFS/ME, IBS and FM is a plague.

    How many other disorders poorly understood with no identified cause whether new or already existing will these vultures go after to feed upon? The potential for that is too great as far as I'm concerned. We owe it to the sufferers of those future disorders and even more so to newly afflicted amongst us as well as those soon to be.

    Perhaps the key lies in the fact that overburdened overwhelmed well meaning medical Doctors are influenced by this and do no in-depth investigation to rule out other causes. I know that my PCP has ran vary little testing to IMO rule out anything, I also know that my Rheumatologist has ran 0 tests.

    How many other doctors arrive at in their minds a diagnosis of depression, anxiety, Somatization or the CFS psychosomatic belief and inappropriately treat or often don’t treat their patients? How many other testable, identifiable and treatable conditions go undiagnosed because the doctor concludes they have CFS/ME and that it’s all in their head?

    IMO we are not just fighting one Plague that of CFS/ME but that of the Psychiatric lobby as well.
     
  13. sacha

    sacha

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    RESULTS: Although CFS patients were significantly slower in colour naming all of the Stroop word categories than controls, there was no evidence for illness or depressed words creating greater interference than neutral words. However, on the ambiguous cues task, CFS patients made significantly more somatic interpretations than controls and this bias was significantly associated with the extent to which they currently reported symptoms.

    CONCLUSION: CFS patients have an interpretive bias for somatic information which may play a part in the maintenance of the disorder by heightening patients' experience of physical symptoms and helping to maintain their negative illness schemas. Although patients did not show an attentional bias in this study, this may be related to the methodology employed.


    This conclusion is preposterous! I can't understand how the 'study' got published. It is pure conjecture. The only possible conclusions are:
    1) CFS patients executed the task more slowly than controls (possible conclusion - they're brain damaged)
    2) They have no preference for 'depressed' words (possible conclusion: they're not depressed)
    3) They have a preference for body-or illness related words (possible conclusion: they don't feel too well)

    These psychs should repeat their 'study' with a group of malnourished people. I bet they'd show a preference for food related information 'which may play a part in the maintenance of the food obsession by heightening patients' experience of hunger and helping to maintain their negative nourishment schemas'
     
  14. Dolphin

    Dolphin Senior Member

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    Yes. It's for that sort of reason that I don't think others should be facilitating him do surveys on ME/CFS and Fibromyalgia.
     
  15. Sean

    Sean Senior Member

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    Stuff like this what makes me 'mentally ill', as in seriously angry and depressed. Is this the best he can come up with?

    He has completely failed to factor in the secondary consequences of being seriously physically ill, for decades, with a seriously misinterpreted, stigmatised and mistreated disorder.

    Peer review is clearly in desperate need of a serious overhaul.
     
  16. jonc

    jonc

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    Patientslikeme.com lives by people using it. I suggest writing to their researcher (Michael Massagli), politely informing him of your objections to this sort of pseudo-scientific research. What will really get him concerned is if you say that you, and everyone you are in contact with will stop using their site if they allow their facilities to be used for this sort of rubbish.

    Just a suggestion.
     
  17. Dolphin

    Dolphin Senior Member

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    Just to point out that hopefully the information in this thread will allow anyone to do this. I have a lot on at the moment myself.
     
  18. Emmanuelle

    Emmanuelle

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    Actually, psychiatrists are real doctors; they are M.D.s-- they go to medical school and then extra years of training. Most of them just do medication now days. I happen to be married to a psychiatrist who still does therapy with people and actually helps them ... :) And he's the doctor who told me I have ME/CFS. (He used to work with chronic pain patients and multiple personality patients-- so he's used to illnesses/conditions that other doctors don't believe in.)

    Anyway, yeah, most of them are probably messed up and the profession certainly hasn't done a lot for us ... but just wanted to say there's at least one shrink on our side ... thanks.
     
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Good idea to mail them at mmassagli@patientslikeme.com

    Feel free to use any of my text below.

     
  20. Francelle

    Francelle Senior Member

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    "BACKGROUND: Chronic fatigue syndrome (CFS) and depression share a number of common symptoms and the majority of CFS patients meet lifetime criteria for depression."

    I've never been depressed a day in my life........perhaps a microsecond each bout 'tis all, - twice at the most and ten years apart!

    Furthermore......catastrophisers? Wrong again! What about the people that play everything down like moi and probably many of us here? It beggars belief these kind of sweeping, irrational statements.

    All I can assume is that they are using CFS in the non-M.E. sense, as in chronic fatigue with no neurological, immunological or endocrine involvement or symptoms.
     

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