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

Dolphin

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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.

You're invited to participate in a survey.

Living with Fibromyalgia or CFS

Dear PatientsLikeMe Member:

How does living with Fibromyalgia or CFS impact your life? By participating in this new research study, you can share your experiences and feelings directly with leading researchers, while revealing ways we can improve the tools to help you manage your condition.

Conducted in collaboration with Professor Keith J. Petrie of University of Auckland (Auckland, NZ), a leader in the field of understanding illness perceptions and their impact on health outcomes, this survey includes questions about impacts of your condition on your physical activities, social activities and emotional health. Some of the questions are the same as those you may have answered before on the site, but we're asking them again now to understand how those answers are related to new questions that you haven't answered before. This survey will set a baseline and we may survey you again in a few months to learn what has changed and why.

Ready to begin? Click "Yes, I'd like to participate" below.

If you have any questions or comments, please feel free to contact me at mmassagli@patientslikeme.com.

As always, thanks for your participation.
Michael Massagli Ph.D.
Research Scientist, PatientsLikeMe

NOTE:
The results of the research will be shared with the PatientsLikeMe Fibromyalgia/CFS community and may help everyone understand more effective ways of dealing with these conditions. The results may also be presented in educational settings, at professional conferences, or published in professional journals in the field of medicine. No personal information will be presented in any way and all materials will be kept confidential.

No risks or discomforts are anticipated from taking part in this study. The survey takes about 25 minutes to complete, but your time may vary depending on your answers. You can withdraw from the survey at any time without having your answers recorded. If you decide not to participate in the survey or if you decide to not complete the survey after you start it, you will still remain a member in good standing of the PatientsLikeMe community.

Save this invitation. If you start the survey but need to stop before finishing, you can return to where you left off by coming back to this invitation and clicking on the "Yes" link again. This survey will be open for your participation until February 6, 2011.
 

Dolphin

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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.

Experimental evidence for interpretive but not attention biases towards somatic information in patients with chronic fatigue syndrome.

Br J Health Psychol. 2003 May;8(Pt 2):195-208.

Moss-Morris R, Petrie KJ.

Department of Health Psychology, The University of Auckland, New Zealand. r.moss-morris@auckland.ac.nz

Abstract
OBJECTIVE: This study tested whether CFS patients have an attentional information processing bias for illness-related information and a tendency to interpret ambiguous information in a somatic fashion.

DESIGN: 25 patients meeting research criteria for a diagnosis of CFS were compared to 24 healthy matched controls on a modified Stroop task and an ambiguous cues task.

METHOD: In the modified Stroop task, participants colour named a series of somatic, depressed and neutral words in order to ascertain whether the somatic words were more distracting to the CFS patients than the depressed and neutral words when compared to controls. In the ambiguous cues task, participants were presented with a tape-recorded list of 30 words including 15 ambiguous illness words (e.g., vein/vain) and 15 unambiguous words. For each word, they were asked to write down the first word that came into their head. A somatic bias score was obtained for each subject by summing the number of somatic responses to the ambiguous word cues.

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.

PMID: 12804333 [PubMed - indexed for MEDLINE]
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Thoroughly modern worries: the relationship of worries about modernity to reported symptoms, health and medical care utilization.

J Psychosom Res. 2001 Jul;51(1):395-401.

Petrie KJ, Sivertsen B, Hysing M, Broadbent E, Moss-Morris R, Eriksen HR, Ursin H.

Health Psychology Research Group, Faculty of Medicine and Health Sciences, The University of Auckland, Auckland, New Zealand. kj.petrie@auckland.ac.nz

Abstract

OBJECTIVE: There is now greater public concern about how features of modern life pose threats to personal health. In two studies, we investigated the relationship between individuals' worries about modernity affecting health to symptom reports, perceptions of health and health care utilization.

METHODS: In the first study, 526 University students completed a questionnaire measuring modern health worries (MHW), symptom reports and health perceptions. A second study utilized an existing national survey database of 7869 New Zealanders. Part of the survey examined people's concerns of modernity affecting their health in the past 12 months, as well as the use of conventional medical and alternative health care.

RESULTS: We found concerns about modernity affecting health were made up of four major components: environmental pollution, toxic interventions, tainted food and radiation. MHW were significantly associated with somatic complaints and ratings of the importance of health to the individual. We also found individuals with high levels of MHW had a higher rate of food intolerance and chronic fatigue syndrome (CFS). In the second study, we found MHW to be associated with medical care utilization, particularly of alternative health practitioners.

CONCLUSIONS: The results of these studies suggest concerns about modernity do cause changes in the way individuals interpret somatic information and may play a role in undermining perceptions of health. The area of MHW is worthy of study and may hold importance for understanding aspects of functional disorders.
PMID: 11448708 [PubMed - indexed for MEDLINE]
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Discriminating between chronic fatigue syndrome and depression: a cognitive analysis.

Psychol Med. 2001 Apr;31(3):469-79.

Moss-Morris R, Petrie KJ.

Health Psychology Research Group, Faculty of Medical and Health Science, The University of Auckland, New Zealand.

Abstract

BACKGROUND: Chronic fatigue syndrome (CFS) and depression share a number of common symptoms and the majority of CFS patients meet lifetime criteria for depression. While cognitive factors seem key to the maintenance of CFS and depression, little is known about how the cognitive characteristics differ in the two conditions.

METHODS: Fifty-three CFS patients were compared with 20 depressed patients and 38 healthy controls on perceptions of their health, illness attributions, self-esteem, cognitive distortions of general and somatic events, symptoms of distress and coping. A 6 month follow-up was also conducted to determine the stability of these factors and to investigate whether CFS-related cognitions predict ongoing disability and fatigue in this disorder.

RESULTS: Between-group analyses confirmed that the depressed group was distinguished by low self-esteem, the propensity to make cognitive distortions across all situations, and to attribute their illness to psychological factors. In contrast, the CFS patients were characterized by low ratings of their current health status, a strong illness identity, external attributions for their illness, and distortions in thinking that were specific to somatic experiences. They were also more likely than depressed patients to cope with their illness by limiting stress and activity levels. These CFS-related cognitions and behaviours were associated with disability and fatigue 6 months later.

CONCLUSIONS: CFS and depression can be distinguished by unique cognitive styles characteristic of each condition. The documented cognitive profile of the CFS patients provides support for the current cognitive behavioural models of the illness.
Psychological influences on the perception of immune function.

Psychol Med. 1999 Mar;29(2):391-7.

Petrie KJ, Booth RJ, Elder H, Cameron LD.

Department of Psychiatry and Behavioural Science, University of Auckland Faculty of Medicine and Health Science, New Zealand.

Abstract
BACKGROUND: Perception of deficiencies in immunity are common in a number of patient complaints. However, little is known about the way in which individuals form perceptions about the competence of their immune system. In two studies we examined the relationship between subjects' perceptions of their immune functioning, physical symptoms, mood and measures of immunity.

METHODS: In Study 1, 20 healthy volunteers completed global ratings of their immune system functioning, as well as mood and symptom reports, twice a week for 5 weeks. At the same time, blood samples were taken to assess serum IgA, IgG, and IgM antibodies. In Study 2, another sample of 58 subjects completed the same measures weekly for 5 weeks and their blood was tested for concentrations of CD3, CD4, CD8, and CD16 lymphocytes.

RESULTS: We found perceptions of immune functioning to be unrelated to the concentrations of serum antibodies or blood lymphocytes. Immune perceptions were strongly related to mood and in particular, feelings of fatigue and vigour. The experience of recent physical symptoms, while not as strong as mood variables, was also important in perceptions of immune functioning.

CONCLUSIONS: Mood seems to be an important determinant in the perception of immune function, and complaints about immune dysfunction in clinical situation should be investigated with this possibility in mind.

PMID: 10218929 [PubMed - indexed for MEDLINE]
Full Free text: http://jnnp.bmj.com/cgi/pmidlookup?view=long&pmid=8778249
or
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC486357

Neuropsychological deficits in chronic fatigue syndrome: artifact or reality?

J Neurol Neurosurg Psychiatry. 1996 May;60(5):474-7.

Moss-Morris R, Petrie KJ, Large RG, Kydd RR.

PMID: 8778249 [PubMed - indexed for MEDLINE]

Final paragraph:

The fact that only psychological rather than organic factors
have shown a relation to neuropsychological deficits
to date point to the key role of psychological factors in
explaining neuropsychological symptoms in chronic
fatigue syndrome.
Patients with chronic fatigue syndrome
consistently have higher self ratings of cognitive impairment
but these deficits are unrelated to objective tests of
cognitive performance. Future research on neuropsychological
functioning in chronic fatigue syndrome should
include psychological states as part of the assessment and
preferably use psychiatric diagnostic groups as well as self
report measures to stratify within chronic fatigue syndrome
samples.' An important focus in future studies
should be to identify the underlying mechanisms involved,
such as the role of the patient's personal illness beliefs in
contributing to their subjective reports of cognitive difficulty.
33 Somatic focus and overconcern about symptoms
may play an important part in speed of information processing
by competing for attentional resources.
As chronic
fatigue syndrome has a profoundly disabling effect on people's
lives, an important omission in previous research has
been the absence of data relating neuropsychological findings
to daily functioning and the ability to work.
-------

The impact of catastrophic beliefs on functioning in chronic fatigue syndrome.

J Psychosom Res. 1995 Jan;39(1):31-7.

Petrie K, Moss-Morris R, Weinman J.

Department of Psychiatry and Behavioural Science, University of Auckland Medical School, New Zealand.

Abstract
This study investigated the association between catastrophic beliefs and disability in the context of Chronic fatigue syndrome (CFS). A sample of 282 CFS sufferers were asked about the consequences of pushing themselves beyond their present physical state. Responses were coded into catastrophic or non-catastrophic categories. While not differing on the length of illness or psychological adjustment, subjects demonstrating catastrophic responses evidenced significantly higher levels of fatigue and were more disabled in terms of their ability to work both in their normal occupation and around the house. Catastrophizers also showed greater disability in terms of their sleep and rest, social communication, and recreational activities. The role of catastrophic beliefs and personal perceptions of CFS in maintaining the illness is discussed.

PMID: 7760301 [PubMed - indexed for MEDLINE]
 
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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 ... ; )
 

Enid

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

ukxmrv

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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.
 

Dolphin

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One of my 101 things to do before i die must be to---Smack a psychiatrist in the teeth. Arhhh
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!).
 
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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!).
Which is worse, i don't want to get the wrong one before i go to heaven?
 

Dolphin

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

floydguy

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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.
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.
 

Dolphin

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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.
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.
 

Desdinova

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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.
 
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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'
 

Dolphin

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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'
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.
 

Sean

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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.
 
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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.
 

Dolphin

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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.
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.
 
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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.
 

justinreilly

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Good idea to mail them at mmassagli@patientslikeme.com

Feel free to use any of my text below.

Dr. Massagli,

Thank you for the good work you do at patientslikeme. I have ME (aka "CFS") and have throughly researched the subject. Let me assure you that Dr. Petrie is a fraud. He and his colleagues continue to publish their anti-scientific studies of what they purport to be "CFS" patients. What they really do is study idiopathically fatigued people, those with fatigue due to no known medical condition. ME ("CFS") is fully accepted by all authorities including CDC, NIH and WHO as a serious, known medical condition. Thus, by definition they do not study anyone with ME (aka "CFS"). They do this by using the patently invalid "Sharpe/'Oxford' 1991" definition of "CFS" which fraudulently defines "CFS" as mere idiopathic chronic fatigue. They do this to help insurance companies avoid making "chronic disbursements" to the gravely physically ill by purporting to prove that "CFS" is just fatigue, some of which is psychogenic. But that "proof" is merely a circular result of their invalid definition.

PLEASE do not collaborate with these charlatans! You would be harming patients like me and patientslikeme.com If you have any doubts, questions or comments, please contact me at [redacted]. Thank you for your consideration.

Representative paper by Dr. Petrie on "CFS"
Full Free text: http://jnnp.bmj.com/cgi/pmidlookup?v...g&pmid=8778249
 

Francelle

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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.