Discussion in 'PsychoSocial ME/CFS Research' started by Trish, Aug 8, 2018.
This paper was mentioned on another thread here.
Shouldn't people use appropriate ill health control groups for things like this?
Google turned up the PID-5 questionnaire:
I can imagine some reasons why CFS patients might have unusual answers for a few of these questions, eg:
29 I can’t concentrate on anything.
30 I’m an energetic person.
31 Others see me as irresponsible.
I should probably read more than the abstract before commenting, but I feel like every 'personality' questionnaire I've looked at seems poorly designed for distinguishing between answers driven by someone's 'personality' rather than just their circumstances.
Don't the first 2 sentences contradict each other? Starts with an assertion, then says there is no evidence to support the very reason for their "research".
Personally I have no problem with anyone who's in an unusual and isolated position being a little odd, I think calling it a personality disorder is OTT, people seem to require other people, and shared experiences, to maintain a "normal" view of "reality", probably because this is, to a large part, what "reality" is, in practical terms.
This applies to everyone, not just PwME - we are not broken, we simply reflect that our lives are different, and this cannot be fixed by simply saying a person has a personality disorder and"treating" it, because the person isn't the problem!!
Seems like classic pathologising of a 'normal' reaction to life with ME (also known as victim blaming) + projection of researcher biases.
Interesting because I think a lot of people might argue that 'personality disorders' (using scare quotes because I know for some it is a useful category but for others can be used oppressively) themselves are a reaction to difficult circumstances (i.e. abusive/neglectful upbringing.)
Think it's helpful to look at some of the mental health advocacy, like work done by Dr Jay Watts (Shrink at Large on Twitter) to get a fuller picture on PDs as a construct.
I've not read the paper, but were they looking to try to validate the PID-5 for CFS patients by using it and comparing it to their other assessments? The whole thing looks built on sand though if their conceptions of how to assess PD are built around the assessment of those living in very different circumstances to those with CFS.
Neither have I, I meant the first 2 sentences in the abstract.
But the next sentence says
So, how can they make the assertion, that PwME have a high likelihood of PD, and then state that there is no evidence for that assertion, as no/very few studies have been done.
So worrying about not having your carer anymore.
Trying hard anyway, sometimes to a degree that seems unrealistic.
Not being as outgoing as previous, due to energy constraints.
Being miserable and grieving because your life has radically altered without your consent.
Perfectionism: the attempt to control those few things that still are within your control. Wonder why.
And the 'unusual' belief you have ME. Giving them the benefit of the doubt: the unusual beliefs some patients construct around their onset experiences because it gives the illusion of control over an uncontrollable situation.
This is not 'personality'.
Sorry - I think I combined the first two sentences into one, so was looking at the first three.
I always wonder who volunteers for such studies. I mean people are told it's about personality disorders, right?
There are those who have bought it, hook, line, and sinker.
I wonder if it helps them with the 'incurable' aspect. Psych diseases are widely considered incurable by default, though able to be modulated through careful intervention. Might also allow the illusion of control -- that if you think positively and work hard, your condition will improve.
Even with a myriad of interventions, even minor ME is wildly unpredictable. Some might be willing to accept a psych diagnosis in exchange for the illusion of additional control over their disease experience.
[Edit: not that this 'deal-making' is conscious!]
Perhaps they were just told it was to help understand whether pwME had any particular psychological issues that could be helped.
As a veteran sufferer I admit it aggravates me that people are willing to believe. But I also think that if it were not for my situation I could understand that it may be (just IMO) because to think of it as a personality thing is to make it first, clearly defined and also within the persons control. If it's personality then it can be modified and the condition be made to go away. To me that's a powerful reason.
As a sidebar, there are a number of media stories out there by all manner of people about their ME. Every time I see one of them posted I keep wondering why we've never heard of this person. Where have they been and why don't they know more? Clearly the need to broaden a better understanding of ME is still very much an issue. I hope that this is changing and that what we're witnessing in terms of false understanding (the reflexology for severe ME as an example from another thread) is just the 'lag time' it takes in terms of the wider community's awareness.
Perhaps if there is the ability to comment on these articles then we can continue to provide links to more accurate info.
Just reading the abstract made me think that the researchers view pwME as slimy beasties pinned to a card that they can go "Ewwww" at and poke with a stick.
But this would breach the Declaration of Helsinki, wouldn't it, and "informed consent"?
In my view personality is fixed (but this is a belief - when it comes to personality, character, the self etc. it's about belief), this is how one is born. You can change/influence minor things and some behaviors maybe, but my personal experience is when it comes to personality, lasting changes are exhausting and most probably will make you very unhappy.
To me it is difficult to understand that people will willingly accept their personality is to blame for their disease (unless it's due to alcoholism or another constant drug usage) - in fact this says one is worthless. It's a degradation of oneself. First, I can't understand how people would accept being seen as worthless, also by themselves, second I don't understand how people can feel fine with feeling guilty - the blame is on them, if it weren't for their personality everything would be fine - and third I can't understand how people can feel fine with being degraded by others and oneself.
I also would like to have control over the disease, but I wouldn't trade my self-esteem for the illusion of control.
Actual article is here (in Spanish):
The descriptive statistics are shown in table 3. They used the 1994 CDC criteria.
The highest (mean) score for those with "personality disorders" was 1.69 which lies somewhere between "Sometimes or Somewhat True" and "Sometimes or Somewhat False". That score of 1.69 was for Emotional Lability, followed by 1.60 for Rigid perfectionism and 1.56 for Distractibility. These seem like low scores for a group that is supposed to have personality disorders.
The authors state that the sample was derived from a tertiary care sample and may therefore be biased towards patients with a more severe clinical profile. They also state that the results are limited due to the lack of control groups, both non-clinical and non-CFS.
The authors conclude that this instrument is valid for use with CFS patients and there is a personality disorder subtype of CFS.
As far as the association mentioned in the (English) abstract, that regression (presumably sensitivity analysis?) found only Detachment and Rigid perfectionism to predict personality disorders in this group of patients. Here are the questions reflecting those domains.
Detachment = Withdrawal, Anhedonia, Intimacy Avoidance scales.
I prefer not to get too close to people.
I keep to myself.
I go out of my way to avoid any kind of group activity.
I keep my distance from people.
I don’t like spending time with others.
I’m not interested in making friends.
I say as little as possible when dealing with people.
I don’t like to get too close to people.
I don’t deal with people unless I have to
I avoid social events.
This domain clearly reflects social withdrawal due to severe chronic illness and can reflect depression as well.
I don’t get as much pleasure out of things as others seem to.
Nothing seems to interest me very much.
I almost never enjoy life.
I’m an energetic person.
I almost never feel happy about my day-to-day activities.
I really live life to the fullest.
Nothing seems to make me feel good.
I rarely get enthusiastic about anything.
This domain reflects depression, but several of those will be affected by severe chronic illness - living life to the fullest, nothing making me feel good, energetic person etc.
Intimacy Avoidance scale:
I prefer to keep romance out of my life.
I enjoy being in love.
I break off relationships if they start to get close.
I’m just not very interested in having sexual relationships.
I steer clear of romantic relationships.
I prefer being alone to having a close romantic partner.
This domain reflects the difficulties of having a romantic relationship when you have a severe chronic illness, something that I myself and many others of the forum have experienced.
Rigid Perfectionism scale:
I’ve been told that I spend too much time making sure things are exactly in place.
People tell me that I focus too much on minor details.
If something I do isn’t absolutely perfect, it’s simply not acceptable.
Even though it drives other people crazy, I insist on absolute perfection in everything I do.
I check things several times to make sure they are perfect.
It is important to me that things are done in a certain way.
I keep trying to make things perfect, even when I’ve gotten them as good as they’re likely to get.
I simply won’t put up with things being out of their proper places.
I have a strict way of doing things.
Well these responses are clearly maladaptive perfectionism, and I doubt most people with ME or CFS that I know personally would score highly on this scale.
My own opinion is that there just happen to coincidentally be those with such characteristics, eg rigid perfectionism, due to bad luck in the life lottery. To gather the data, patients were refereed to the Department of Psychiatry after being diagnosed by
Department of Internal Medicine physicians at the Sant Rafael Hospital, Barcelona, Spain. The authors state the response rate for filling in the questionnaires was 95.5%.
perfectionism my ass
I have a high tolerance for mess and untidyness and my paperwork is not filed in any sort of order
I was better on doing housework before I had ME but not that much better..........
Thanks for pulling them out SL.
I don't know. I suspect that the ones in bold could relate to people with CFS becoming more picky about certain things in order to manage their illness.
eg since falling ill I'm much more picky about where/how I sleep, making sure that things are dark enough, etc. I've got myself set up with black-out material, etc, so it's not something that causes me trouble in my own room but I know that it can seem like I fuss too much over these things when I go to stay somewhere new. Before I fell ill I was fine sleeping on sofas in rooms with no curtains.
This is complicated by the fact that I'm also not healthy/wealthy enough to do things the way I'd like in other areas, so could count as being less picky - eg I've always liked good food, but rely much more on ready meals, convenience food, basics, etc now.
It would be interesting if the CFS patients were much more likely to endorse the perfectionism items I put in bold than the others. It's not something I'd request, but the data might be available.
My guess would be this is a learned behaviour at the feet of their parents. They were likely taught this overtly and covertly, and internalized it. For some it may seem like a fait accompli.
Like you, experientially I find it impossible to identify with that mindset. But based on my experience working with folks, it never fails to shock me how cruel some parents can be, and not just physically.
Recently I had a client that identified has having body image problems (but not primarily why he was seeing me). His father was a pro football player and his mother a fitness model. They would critique his body: 2 pounds too much, not enough muscle.
I asked him how he interpreted their comments.
The anhedonia questions could be answered from frustration which is different from depression. My grandchildren were visiting and I was gloriously happy on the one hand (8 months and 20 months, just radiating cuteness) but I quickly became exhausted and it was back to bed a devastating experience so no, I did not enjoy the occasion as much as other people would have.
I need everything exactly in place because I have no energy to spare to find things. I can only get dressed in the morning if I can put my hand into the right part of the draw to pull out the right piece of underwear. Not obsessiveness, bitter experience that the extra movements involved in rummaging means I have to give up and stay in pyjamas all day.
Even chronically ill controls would not show up our problems as the ones as limited as us would not be able to do the trial but even more mildly affected people with ME need to make these adjustments to life. When I was still well enough to go out I became incandescent with rage when the bus did not stop at the bus stop but a few yards further along. I realised that I knew instinctively a few extra yards at that point meant I might not be able to get round the supermarket. My friends with MS don't have to fine tune their illness so much.
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