"Unraveling the role of perfectionism in chronic fatigue syndrome"

CBS

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I honestly could not find an appropriate section on the forums in which to post this article. I seriously questioned whether or not it has any place on these forums. I have posted it because of the potential damage it will do and the need to challenge the article's premise and draw attention to the real harm it will do.

Kempke, S., et al., Unraveling the role of perfectionism in chronic fatigue syndrome: Is there a distinction between adaptive and maladaptive perfectionism?, Psychiatry Res. (2010), doi:10.1016/j.psychres.2010.09.016

In the current study, we investigated whether the distinction between adaptive (i.e. high personal standards) and maladaptive (i.e. concern over mistakes and doubt about actions) perfectionism that has been found in the literature, is also valid in patients with chronic fatigue syndrome (CFS). We hypothesized that maladaptive, but not adaptive, perfectionism would be significantly and positively related to severity of fatigue and depression in CFS. We examined this hypothesis in a sample of 192 CFS patients using structural equation modelling (SEM). Although the two perfectionism dimensions were related to each other, results supported a model in which only maladaptive perfectionism was positively related to severity of fatigue and depression. Further, we found that depression fully mediated the effect of maladaptive perfectionism on fatigue. The results suggest that adaptive and maladaptive perfectionism are two distinct, albeit related, dimensions in CFS. Findings of this study have important implications for theory and treatment of CFS, particularly for cognitivebehavioral treatment.
The authors claim to be studying and writing about CFS and if the article were not so horrifying in its potential to do serious harm, I would have thought it to be a satirical piece put together by some of the more clever amongst us. I doubt that collectively we could have come up with a more perfect piece of satire.

The authors do an absolutely flawless job of capturing the danger of the diagnostic/cohort issues perpetuated by the CDC as they confound depression with CFS. They then gleefully run headlong down the CBT/GET road with recommendations on how one may refine CBT (apparently we need to lower our standards and expectations - I'd suggest we start by lowering our expectations of the psychiatric community even further - as if that was possible).

Results of this study may have important implications for treatment of CFS and particularly cognitivebehavioral treatments which are considered, together with Graded Exercise Therapy, to be the only evidence based treatments for CFS.
Please understand if I don't participate much in the discussion of this article. After having slogged my way through it, I'm feeling like I need to go take a shower.

Someone needs to respond to this. It is published in the journal Psychiatry Research. People's lives will be impacted.

Jennie, I know this question is likely to ignite another CAA flare up but I have to ask, what is the CAA's policy on responding to articles like this? If the CAA has no policy, does the IACFS/ME have a policy?

I tried to respond to the CDC's article on CFS and personality this past summer and simply I couldn't sustain the effort/went into a prolonged crash. I have a pdf copy of this entire article if anyone who is interested.
 

shannah

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I agree CBS that it needs challenged by one of our more clear thinking and articlulate members here. Hopefully someone can take it on.

This drivel really makes me feel ill. Imagine people with their high priced salaries getting paid to spew out such rubbish. (I see it's from Belgium and not Britain.)
 
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Can anyone explain how this SEM stuff is cooked up? The questionnaires given were Checklist Individual Strength-20, Beck Depression Inventory, Frost Multidimensional Perfectionism Scale. Note that they had no healthy or depressed controls to which a comparison could be made. I thought the point was to demonstrate a statistically significant difference between groups.

One of the primary problems with this sort of research is the patient selection biases, even restrictive cohorts won't fully control for this. You really need to identify factors such as depression and perfectionism BEFORE the onset of the disease to demonstrate whether it has etiological consequences.

In addition, we also examined whether the effect of maladaptive perfectionism on fatigue was mediated by depression. We first tested a model including both direct (MAL - > FAT) and indirect (MAL - > DEP - > FAT) effects. The model showed a good fit to the data (CFI = 0.985; RMSEA = 0.059; SRMR = 0.056). However, the direct path from maladaptive perfectionism to fatigue was not statistically significant (path coefficient = − 0.15, ns). Therefore, a model including only indirect effects was examined. The model provided a good fit to the data (CFI = 0.986; RMSEA = 0.059; SRMR = 0.055). Maladaptive perfectionism was significantly and positively related to severity of depression (path coefficient = 0.82, P < 0.001), which in turn was positively and significantly associated with severity of fatigue (path coefficient = 0.75, P < 0.001) (see Fig. 2). The results support a full mediation model in which the effect of maladaptive perfectionism on fatigue is fully mediated through depression.
How does this work exactly? It seems more like cherry picking to me since the direct path was not significant.
 
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Could someone supply me with the full-text version of this study?

We would like to submit a comment to Psychiatry Research.

Thanks in advance.

Frank
 
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Could someone supply me with the full-text version of this study?

We would like to submit a comment to Psychiatry Research.

Thanks in advance.

Frank
Hi Frank, please Private-Message me your preferred email address so I can send a PDF. A google search reveals one at hetnet.nl, but I'm not sure if that is current.
 

Dolphin

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CIS-20 questionnaire

If one really wants to get deep into these studies, I think it helps to have the questions.

The 20 questions are on page 90 of the file at:
http://arno.unimaas.nl/show.cgi?fid=5389

CIS (Checklist Individual Strength)
I feel tired
I feel very active (R)
Thinking requires effort
Physically I feel exhausted
I feel like doing all kind of nice things (R)
I feel fit (R)
I do quite a lot within a day (R)
When Im doing something, I can concentrate quite well (R)
I feel weak
I dont do much during the day
I can concentrate well (R)
I feel rested (R)
I have trouble concentrating
Physically I feel I am in a bad condition
I am full of plans (R)
I am tired very quickly
I have a low output
I feel no desire to do anything
My thoughts easily wander
Physically I feel in a good shape (R)
(R) = recoded item. - I think this should be "reversed item" i.e. in how it is scored
Here's a description from another source:
http://www.biomedcentral.com/1471-2474/11/142
Fatigue is measured with the "Subjective Fatigue" subscale of the Checklist Individual Strength (CIS) [44]. The CIS is a self-administered questionnaire assessing 20 items, concerning 4 subscales divided in: subjective experienced fatigue (8 items), concentration (5 items), motivation (4 items) and physical activity (3 items). The outcomes per question are given in a 7-point scale, ranging from the statement 'totally right' to the statement 'totally wrong'. The total score is counted in points with a range of 1-7 per question and a total score range of 8-56 points. The CIS is a sensitive instrument with good discriminating power and reliability [44].
 

jspotila

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Hi Shane,

The Board has not set any policy on the Association's role in responding to research papers like this one. That decision is delegated to the staff. In turn, the staff must assess whether to publicly respond to such articles in light of the many other demands on time and resources. The Association's strategy is "To stimulate research aimed at the early detection, objective diagnosis and effective treatment of CFS through expanded public, private and commercial investment." So the staff must constantly ask what activities best operationalize the strategy.

I think everyone, Board and staff, would agree that this paper richly deserves criticism, and it is certainly not the kind of research we think should be funded. The question for the staff is whether the time and effort required to draft and submit a response to the journal should take priority over other tasks, such as designing the next phase of our own research program or working on the two XMRV task forces or advocating for positive action at NIH (etc etc etc). The staff must also consider where our expertise lies and what we can do best. On the issue of responding to these sorts of papers, the Board is comfortable delegating that choice to the staff.

I think it would be fantastic, and probably more successful, for the IACFS/ME to take this issue on. Their membership has substantial expertise and qualifications for this type of work. I think it likely that Psychiatry Research might consider a letter from the IACFS/ME as having more gravitas since that's the association of researchers and clinicians in our field.

To my reading, the article is sloppy and surprisingly divorced from what is really going on in CFS research these days. As I said, the Board believes the decision of whether and how to respond to such articles is best made by the staff, and I've sent them a copy of the article.
 

Dolphin

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Beck Depression Inventory

Beck Depression Inventory
They didn't use the ones in italics for this study.

http://www.oumedicine.com/workfiles/OU MEDICAL CENTER/AdultBeckDepressionInventory.pdf

Choose one statement under each letter that best describes you for the last seven days. Circle the
number to the left of the statement you have chosen.

A. 0 I do not feel sad
1 I feel sad
2 I am sad all the time and I cant snap out of it
3 I am so sad that I cant stand it

B. 0 I am not particularly discouraged about the future
1 I feel discouraged about the future
2 I feel I have nothing to look forward to
3 I feel that the future is hopeless and things cannot improve

C. 0 I do not feel like a failure
1 I feel I have failed more than the average person
2 As I look back, on my life, all I can see is a lot of failure
3 I feel I am a complete failure as a person

D. 0 I get as much satisfaction out of things as I used to
1 I dont enjoy things the way I used to
2 I dont get real satisfaction out of anything anymore
3 I am dissatisfied or bored with everything

E. 0 I dont feel particularly guilty
1 I feel guilty a good part of the time
2 I feel quite guilty most of the time
3 I feel guilty all of the time

F. 0 I dont feel I am being punished
1 I feel I may be punished
2 I expect to be punished
3 I feel I am being punished

Choose one statement under each letter that best describes you for the last seven days. Circle the
number to the left of the statement you have chosen.

G.
0 I dont feel disappointed in myself
1 I am disappointed in myself
2 I am disgusted with myself
3 I hate myself

H.
0 I dont feel I am any worse than anybody else
1 I am critical of myself for my weaknesses or mistakes
2. I blame myself all the time for my faults
3 I blame myself for everything bad that happens

I.
0 I dont have any thoughts of killing myself
1 I have thoughts of killing myself, but would not do it
2 I would like to kill myself
3 I would like to kill myself if I had the chance

J.
0 I dont cry any more than usual
1 I cry more now than I used to
2 I cry all the time now
3 I used to be able to cry, but now I cant even though I want to

K. 0 I am no more irritated now than I ever was
1 I get annoyed or irritate more easily than I used to
2 I feel irritated all the time now
3 I dont get irritated at all by the things that used to irritate me

L.
0 I have not lost interest in other people
1 I am less interested in other people than I used to be
2 I have lost most of my interest in other people
3 I have lost all of my interest in other people

Choose one statement under each letter that best describes you for the last seven days. Circle the
number to the left of the statement you have chosen.

M.
0 I make decisions about as well as I ever could
1 I put off making decisions more than I used to
2 I have greater difficulty in making decisions than before
3 I cant make decisions at all anymore

N.
0 I dont feel I look any worse than I used to
1 I am worried that I am looking old and unattractive
2 I feel there are permanent changes in my appearance that make me look unattractive
3 I believe that I look ugly

O.
0 I can work about as well as before
1 It takes an extra effort to get started at doing something
2 I have to push myself very hard to do anything
3 I cant do any work at all

P.
0 I can sleep as well as usual
1 I dont sleep as well as I used to
2 I wake up 1-2 hours earlier than usual and find it hard to get back to sleep
3 I wake up several hours earlier than usual and cannot go back to sleep

Q.
0 I dont get more tired than usual
1 I get tired more easily than I used to
2 I get tired from doing almost anything
3 I am tired all the time


R.
0 My appetite is no worse than usual
1 My appetite is not as good as it used to be
2 My appetite is much worse now than it used to be
3 I have no appetite at all anymore

Choose one statement under each letter that best describes you for the last seven days. Circle the
number to the left of the statement you have chosen.

S.
0 I havent lost much weight, if any lately
1 I have lost more than 5 pounds
2 I have lost more than 10 pounds during the past week
3 I have lost more than 15 pounds during the past week
4 I have purposely been trying to lose weight by eating less c Yes c No

T.
0 I am no more worried about my health than usual
1 I am worried about physical problems such as aches and pains
2 I am very worried about physical problems and it is hard to think of much else
3 I am so worried about my physical problems, I cannot think about anything else

U.
0 I have not noticed any recent change in my interest in sex
1 I am less interested in sex than I used to be
2 I am much less interested in sex now
3 I have lost interest in sex completely
 

Dolphin

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Frost Multidimensional Perfectionism Scale (MPS-F)

From paper:
2.2.3. Levels of perfectionism
Perfectionism was measured with the Dutch version of the Frost Multidimensional
Perfectionism Scale (MPS-F) (Frost et al., 1990; Luyten et al., 2006b). The MPS-F is a 35-
item self-report questionnaire consisting of six subscales, i.e. Personal Standards (PS),
Concern over Mistakes (CM), Doubt about Actions (DA), Organisation (O), Parental
Expectations (PE), and Parental Criticism (PC). Factor-analytic studies have shown that
items from the CM and DA subscales load together on a maladaptive perfectionism
factor (“maladaptive evaluation concerns”), whereas items from the PS subscale load
together on a factor termed as adaptive perfectionism referring to more positive
strivings associated with perfectionism (Dunkley et al., 2000, 2006; Stoeber and Otto,
2006). Therefore, the PS subscale (e.g., “I have extremely high goals”) was used to
measure adaptive perfectionism, whereas maladaptive perfectionism was assessed
with the CM (e.g., “I should be upset if I make a mistake”) and DA (e.g., “I usually have
doubts about the simple everyday things I do”) subscales. Higher scores indicate higher
levels of Doubt about Actions, Concern over Mistakes and Personal Standards,
respectively. Estimates of internal consistency (Cronbach's α) were 0.94 for CM, 0.77
for DA and 0.85 for PS.

https://kb.osu.edu/dspace/bitstream/1811/32206/1/FinalThesis.pdf

Frost Multidimensional Perfectionism Scale (MPS-F)
MULTIDIMENSIONAL PERFECTIONISM SCALE-FROST (MPS-FROST)
For each item, please select the option that best reflects your opinion.

1. My parents set very high standards for me.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

2. Organization is very important for me.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

3. As a child, I was punished for doing things less than perfectly.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

4. If I do not set the highest standards for myself, I am likely to end up a
second-rate person.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

5. My parents never tried to understand my mistakes.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

6. It is important to me that I be thoroughly competent in everything I do.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

7. I am a neat person.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

8. I try to be an organized person.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

9. If I fail at work/school, I am a failure as a person.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

10. I should be upset if I make a mistake.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

11. My parents wanted me to be the best at everything.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

12. I set higher goals for myself than most people.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

13. If someone does a task at work/school better than me, then I feel like I failed
the whole task.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

14. If I fail partly, it is as bad as being a complete failure.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

15. Only outstanding performance is good enough in my family.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

16. I am very good at focusing my efforts on attaining a goal.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

17. Even when I do something very carefully, I often feel that it is not quite done
right.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

18. I hate being less than the best at things.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

19. I have extremely high goals.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

20. My parents have expected excellence from me.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

21. People will probably think less of me if I make a mistake.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

22. I never felt like I could meet my parents’ expectations.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

23. If I do not do as well as other people, it means I am an inferior human being.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

24. Other people seem to accept lower standards from themselves than I do.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

25. If I do not do well all the time, people will not respect me.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

26. My parents have always had higher expectations for my future than I have.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

27. I try to be a neat person.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

28. I usually have doubts about the simple everyday things I do.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

29. Neatness is very important to me.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

30. I expect higher performance in my daily tasks than most people.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

31. I am an organized person.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

32. I tend to get behind in my work because I repeat things over and over.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

33. It takes me a long time to do something ‘right.’
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

34. The fewer mistakes I make, the more people will like me.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree

35. I never felt like I could meet my parents’ standards.
1 2 3 4 5
Strongly Disagree Disagree Neutral Agree Strongly Agree
 

TheMoonIsBlue

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A little off track, but I don't know how it ever came to be that ME/CFS patients were dubbed "Type A Pefectionists".......? Does it go all the way back to the Tahoe outbreak, because it was in a wealthy area? It is complete rubbish that all, many, or most ME/CFS patients are Type A personalities, or perfectionists, or highly motivated, etc......It doesn't discriminate. Totally chill laid back people get CFS too :) And what about kids who get this disease?
 
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That is an interesting question. I'm not sure what the history is, but one of the reasons why medical practitioners may get that impression is because people with "Type A" traits are simply more likely to be visible and demanding answers about their condition. Of course that is not universally true, as many of us on this forum are not typical type A personalities.
Such stereotypes are an excellent way for an incompetent investigator to shift attention from their own lack of ability and towards blaming the patient.
 

Berthe

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One of the authors is Boudewijn van Houdenhove, the Wessely from Belgium. He was my physician for ten years. Way to long! He is just retired, but now professor emeritus. Recently he told on the radio that although he was rertired, he would continue with his work in CFS. I know this professor very well. I actually wrote one column in my blog about the devestating effect of CBT and GET on me.
At my very first appointment he made clear to me that because of my perfectionism I was in this mess. I did it to myself. The thing with perfectionism is that you can never live up to your own standards. You are always dissapointing yourself. Now I guess that in front of this professor every patint looked perfectionistic. We weren't mentally ill. Hair groomed, nice make-up, well dressed and despite the symptoms willing to overcome the disease. In comparison with his other psychiatric patints we all looked perfectionistic.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com
 

Dolphin

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Thanks for the background, Berthe.

Now I guess that in front of this professor every patint looked perfectionistic ... Hair groomed, nice make-up, well dressed and despite the symptoms willing to overcome the disease.
I hope they start doing spot checks at home on me and I might pass!
 

urbantravels

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I've long believed that you have to have a pretty high baseline level of ambition/drive/whatever to keep from completely disappearing after you contract this disease. I suspect a lot of people who have it just slide out of sight - into homelessness, or living on a relative's couch, or drug addiction, or some other barely-there level of existence. Or, of course, suicide.

I am a HUGE perfectionist and admit it freely. I no more think this is to blame for my illness than I think it was to blame the time I broke my ankle, or any of the times I got the flu. I struggled with my perfectionism when I was healthy and I have a whole different set of problems with it now that I'm sick. It definitely heightens, in some ways, the anguish of being sick, disabled and in pain.

I have to struggle against it in order to better manage my disease - I have to be willing to let things slide, let tasks remain unfinished if they're not essential, take extra time to do things, be willing to break my promises to others sometimes, etc. I certainly think perfectionism might be a contributing factor when people have trouble pacing, or a contributing factor to situational depression because a terribly sick person can't begin to measure up to her own exacting standards.

I'm sure perfectionism makes it hard for people to live with other chronic illnesses and disabilities, too. But I'm pretty sure perfectionism doesn't get *blamed* for people being injured, or falling ill with genetic diseases or autoimmune diseases. Or, for that matter, for their failure to recover.
 

Wayne

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At my very first appointment he made clear to me that because of my perfectionism I was in this mess. I did it to myself. The thing with perfectionism is that you can never live up to your own standards. You are always dissapointing yourself. Now I guess that in front of this professor every patint looked perfectionistic. Love,
Berthe]
Hi Berthe,

Thanks for sharing your experience with this character. All I can say is, "bizarre"!

This reminds me of an account that was shared by one of the members here, [Rrrr - Rivka] if I remember correctly. She related how Jacob Teitelbaum (the guy that claims to understand ME/CFS) said some very similar things to her after only meeting her on the spot at a conference. You just have to wonder where the arrogance comes from that would lead to this type of behavior.

Thanks CBS for posting about this. It's good to keep at least somewhat aware of what continues to transpire "out there" that has the potential to affect us all.

Wayne
 

jspotila

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I've long believed that you have to have a pretty high baseline level of ambition/drive/whatever to keep from completely disappearing after you contract this disease. I suspect a lot of people who have it just slide out of sight - into homelessness, or living on a relative's couch, or drug addiction, or some other barely-there level of existence. Or, of course, suicide.

I am a HUGE perfectionist and admit it freely. I no more think this is to blame for my illness than I think it was to blame the time I broke my ankle, or any of the times I got the flu. I struggled with my perfectionism when I was healthy and I have a whole different set of problems with it now that I'm sick. It definitely heightens, in some ways, the anguish of being sick, disabled and in pain.

I have to struggle against it in order to better manage my disease - I have to be willing to let things slide, let tasks remain unfinished if they're not essential, take extra time to do things, be willing to break my promises to others sometimes, etc. I certainly think perfectionism might be a contributing factor when people have trouble pacing, or a contributing factor to situational depression because a terribly sick person can't begin to measure up to her own exacting standards.

I'm sure perfectionism makes it hard for people to live with other chronic illnesses and disabilities, too. But I'm pretty sure perfectionism doesn't get *blamed* for people being injured, or falling ill with genetic diseases or autoimmune diseases. Or, for that matter, for their failure to recover.
This is all very well said, urbantravels! Where are the studies telling us the role of perfectionism in MS/TB/AIDS/insert disease here? Oh, right. :eek:
 

Dolphin

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This is all very well said, urbantravels! Where are the studies telling us the role of perfectionism in MS/TB/AIDS/insert disease here? Oh, right. :eek:
(saying a similar sort of thing) They don't tend to start talking about such factors if they have good treatments. As Orla has pointed out to me, one never hear them talking about such psychological factors for anemia/anaemia for example.