Perfectionism, depression and anxiety in chronic fatigue syndrome: A systematic review, 2020, Cherry et al

[Hutan]

We do know from the Dubbo study that the greater apparent severity of an infection is correlated with an increased likelihood of the onset of ME. This seems somewhat at odds with the development of long-Covid, where the severity of the infection doesn't seem to predict persistence symptoms of the development of new symptoms.

I'm not sure how reliable that Dubbo finding was. From memory, the baseline testing was done after the onset of the acute illness. In some cases, it was quite a long time after the onset. So, rather than measuring how bad the acute infection was, they may have measured how people were feeling some weeks afterwards, possibly with a retrospective bias on that as well. As I said, that's from memory, but I did make a mental note that the study structure may have made the assessment of acute illness severity a bit dodgy.

I think the idea of a more severe illness increasing the risk seemed quite attractive, both to the BPS people who wanted to support a deconditioning hypothesis and to those of us who favour an immune system perturbation cause. But it may not be true.

I think Jason's prospective study may have found something about severity of illness and likelihood of ME/CFS, although I'm remembering the numbers actually developing ME/CFS as being quite low.

 

[Forbin]

I'm not sure how reliable that Dubbo finding was. From memory, the baseline testing was done after the onset of the acute illness. In some cases, it was quite a long time after the onset. So, rather than measuring how bad the acute infection was, they may have measured how people were feeling some weeks afterwards, possibly with a retrospective bias on that as well.

I must admit that I am prejudiced by my own experience of a really severe URI followed by ME onset just at the point at which I thought I'd recovered. I see a lot stories begin with "the worst flu I ever had," but what percentage of the total cases that is, I don't know.

 

[Woolie]

Maladaptive perfectionism

Another concept that seems unassailable because it cleverly capitalises on a "negative moral valence" word.

"Negative moral valence words" is just my own phrase to describe words or phrases used to label a construct that carry an implicit judgement that they are inherently "bad things" - in a way that is insidious, and allows the judgement to pass without scrutiny. Examples are:

Catastrophising. This term conjures up a caricature of someone wildly running about screaming "this is all a terrible catastrophy". No-one can deny that such behaviour is undesirable. By using that label for behaviors that do not fit that scenario at all, you are implicitly labelling them as hysterical and irrational.

Boom and bust carries a similar sense of frenetic crazed activity that leads to its own inevitable consequences. There is a nice causal implication is this phrase - that the "boom" inevitably led to the "bust". "Bust and boom" is just not a thing.

Perfectionism. A clever label, because of course everyone knows perfection is impossible, so anyone who subscribes to it is clearly misguided. But you can see how valenced it is by the contexts in which it is used. Nobody ever calls an air traffic controller, engineer, risk assessor, investment banker, doctor, nurse or artist even athlete "perfectionistic", even when they value high standards above all else. We use other words for that, ones without the negative barb, like "rigorous" "careful", "thorough", "attention to detail", "high standards".

If by perfectionism you mean excessively high quality standards that significantly compromise a person's daily functioning or wellbeing (e.g., people who never clean the bathroom because it will take them too long to do it to their own high standard), then say that. Don't caricature.

We have started to recognise the problem with these negatively valenced words in some areas. We no longer talk about nymphomania or frigidity, because we realise they carry a judgement about the level of sexual desire/activity that is appropriate for a woman. But we are blind to them in others.

I'm not so keen on narcissistic for the same reasons. It conjures up this caricature of complete obsession with one's self image, which is somehow at the root of all that is wrong with the person. Some people use manipulation, deceit or violence to get what they want, some actually want others to suffer. These people may or may not be obsessed with their own self image, my guess is that in most situations there's a simpler explanation: anger, resentement, bitterness, a sense of entitlement, lust for power, or just plain old greed.

 

[Snow Leopard]

What is maladaptive? What's maladaptive for one individual might be perfectly appropriate for another.

What is perfectionism? Again what's perfectionism for one is appropriate behaviour for another.

Maladaptive is whether it hinders the satisfaction of human needs.

But as you are hinting, a key limitation of these studies (besides participation/self-selection biases) is the lack of grounding of the questionnaires with respect to real-world experiences of patients. These questionnaires also tend to be developed for mostly able-bodied people and so patients may be answering them in a very different context, which always lowers the validity of the scales.

(The questionnaires measuring maladaptive perfectionism were the Depressive Experiences Questionnaire, the Multidimensional Perfectionism Scale and the Frost Multidimensional Perfectionism Scale)

 

[chrisb]

There seems to be a problem with "maladaptive". People are probably only pursuing patterns of behaviour adapted to their prior experience. What they are doing always worked before. They can hardly be expected to display behaviour "adaptive" to a wholly new set of circumstances.

"Adaptive" seems to mean whatever you want it to mean.

 

[Mithriel]

You know, I am not ill with ME but watching a daughter's life destroyed, and watching so much suffering, no wonder there is anxiety and depression--but these are reactive. And 'perfectionism' can also be reactive, to a body over which one has no control, to a life robbed of normal rhythms. I think I have to stop reading this stuff because it's so primitive.

I could easily be seen as perfectionist because I like the house neat and tidy and all jobs kept up to date. However this is because I have learnt from experience that doing things before they build up is the only way I can cope.

For instance, my wardrobe is well organised because I can only get dressed if I can put my hand in and get a skirt without rummaging. That extra effort would use up too much energy. I actually have old bracelets on the hangers so I can find particular black skirts. One is especially comfortable for bad days and the other has a torn hem where it got caught in the wheels and I wear it on the rare days I am going out in my wheelchair another is kept smart for special things.

The things I have given up are not easily apparent - getting rid of rugs and ornaments, not holding celebrations like Easter or birthdays, no outings - so it is easy to think I am obsessive but that does not take every factor into account.

 

[Invisible Woman]

Maladaptive is whether it hinders the satisfaction of human needs.

It is subjective though.

Taking health out of it for moment. If a person is generally thought to be have a maladaptive trait by others but they are happy and fulfilled then is it really maladaptive?

If my husband had a really awful week at work and decided to spend the best part of a day cleaning and polishing his car to get his mind off things, then let him be if it relaxes him. Better than turning to drink and drugs. It's a limited

He might do that once a year or so to protect the paintwork (it's a limited edition) so where's the harm?

If he wanted to do that every week and was neglecting other, more urgent and important tasks that might be a problem for us, as a team.

It's a scale. Everyone will have some trait that appears maladaptive to someone else. The thing is whether it helps or hinders that person & the people around them.

These questionnaires also tend to be developed for mostly able-bodied people and so patients may be answering them in a very different context, which always lowers the validity of the scales.

To be more effective I have to tackle tasks very differently to the approach taken when well. In some ways it's much less efficient - as seen through the eyes of a healthy individual - but it's the only way I can achieve things without destroying myself.

Some examples might be -when well I would set aside some housekeeping time and get the bathroom clean and so on. Now, I might do the sink when it needs it, the toilet some other day and so on. If I'm changing bed linen then while I might want to do it all in one go there's no law says I have to. I could do the duvet one day, pillow cases another and the sheet on yet another.

My behaviour is adapted. I would argue it's appropriate. Who is this person to argue it is maladaptive, let alone that this behaviour perpetuates my illness?

This stupidity can do a great deal of harm when it is used to undermine perfectly good coping strategies. The best person to decide if a coping strategy is right for them is the patient themselves and, for those lucky enough to have family to help, those supporting them.

 

[Barry]

It's possible Barry, although we have no evidence that being a couch potato is protective against ME/CFS and pushing on with exercise while in the acute stage of being ill is a risk factor. Given that there is no evidence, I don't think we have to go with that idea.

Understood, but given we are all arguing so strongly that excessive exercise is what often pushes pwME over the edge, then it must surely follow that those not inclined to exercise much are far less likely to fall foul of that particular trap ... else we are all wrong.

 

[Barry]

Taking health out of it for moment. If a person is generally thought to be have a maladaptive trait by others but they are happy and fulfilled then is it really maladaptive?

No, I'd say by definition that is not maladaptive. My assumption was that "maladaptive perfectionism" goes beyond the notion of being a perfectionist, but adds into the mix being obsessively driven to try and achieve the impossible, and being constantly down due to their inevitable and persistent perceived "failures".

 

[Invisible Woman]

No, I'd say by definition that is not maladaptive. My assumption was that "maladaptive perfectionism" goes beyond the notion of being a perfectionist, but adds into the mix being obsessively driven to try and achieve the impossible, and being constantly down due to their inevitable and persistent perceived "failures".

Yes, that's your opinion based on your measure of it. That's how you judge yourself and those around you.

What is obsessively driven? What is impossible?

IM and I have been perceived as being obsessively driven because we couldn't always make it home for Christmas holidays. Sometimes.key stages of projects had to take place in system downtime and the period over the holidays is just the time. If you work in a bank it can be hard to get your head around that as you work regular hours. One of our critics was a bank clerk.

We were accused of perfectism because they thought we felt no-one else could do our jobs as well as we do. This isn't the case, others approach the job in hand differently, but as long as it works effectively, is on time and within budget and the client is happy that's fine. However, at a certain stage in your career only one person of your seniority will be on the team otherwise it's simply too costly so, unless it's a catastrophic emergency, you don't dump a project at a critical stage to someone else, not least because you don't want them to do that to you. Again Mrs 9-5 Banker couldn't grasp that.

Accusing someone of being constantly down due to perceived failures is a judgement call made by a third party unless you admit to such yourself. If you don't feel that way, then why should you accept that's the case.

I have been in the position of being accused of this very thing by a neurologist. Apart from a letter saying I was diagnosed with ME and hearing from me what I did for a living he pronounced me likely to be suffering from prolonged stress as I worked in what he felt was a high stress, high pressure, highly technical role with a lot of responsibility. As you can imagine, we had quite the exchange of views ending in mutual agreement not to see each other again.

Right. Let's ignore the years of study, the years of experience leading up to being able to take on such a role, the team I worked with & relied on etc. Let's ignore that being a neurologist is as akin to my job as a fish is to a bicycle.

It is all, at the end of the day, a means of judging someone else, with no actual yardstick to measure them by. For example, if he had asked I could have shown the neurologist my copies of performance reviews and appraisals, my bonus record - none if which indicated an employee struggling.

If someone feels they can't cope or keep up that's s different thing and I wouldn't judge them for seeking help and changing their lifestyle.

Someone who happens to be sick being judged that way, based on nothing at all as ME patients can be, is an entirely different matter. It adds to the cumulative harms inflicted.

 

[Perrier]

I could easily be seen as perfectionist because I like the house neat and tidy and all jobs kept up to date. However this is because I have learnt from experience that doing things before they build up is the only way I can cope.

For instance, my wardrobe is well organised because I can only get dressed if I can put my hand in and get a skirt without rummaging. That extra effort would use up too much energy. I actually have old bracelets on the hangers so I can find particular black skirts. One is especially comfortable for bad days and the other has a torn hem where it got caught in the wheels and I wear it on the rare days I am going out in my wheelchair another is kept smart for special things.

The things I have given up are not easily apparent - getting rid of rugs and ornaments, not holding celebrations like Easter or birthdays, no outings - so it is easy to think I am obsessive but that does not take every factor into account.

Dear Mithriel, I am glad you added all this. It is an important point. Order does consume less energy. My elderly 94 yr old mother insists that everything is in its place, and it is precisely because of energy deficit.

 

[cfsandmore]

I asked the psychologist what happens when you are in the back of an ambulance and receive an impure IV of Lactated Ringers? What happens when you need an IV of Dextrose and receive a bag of Saline? It fell on deaf ears, I was given homework about perfectionism.

 

[MEMarge]

I must admit that I am prejudiced by my own experience of a really sever URI followed ME onset just at the point when I thought I'd recovered. I see a lot stories begin with "the worst flu I ever had," but what percentage of the total cases that is, I don't know.

Intereting about the Dubbo studies @Hutan.

My daughter's viral labyrinthitis was quite mild compared with many I know. My sister was unable to even keep water down due to the nausea, so her husband had to call out the GP (It was New Year's day). Others I know have longstanding vestibular/dizziness issues for months or years.
Her specific symptoms of feeling she was on a ship and slightly nauseous went within a few weeks, but she never got well.
She was able to go in for a few lessons while she had the labyrinthitis and keep up with a fair amount of A-level work as well, before the ME took hold.

 

[Sly Saint]

We use other words for that, ones without the negative barb, like "rigorous" "careful", "thorough", "attention to detail", "high standards".

conscientious

 

[Barry]

Yes, that's your opinion based on your measure of it. That's how you judge yourself and those around you.

What is obsessively driven? What is impossible?

IM and I have been perceived as being obsessively driven because we couldn't always make it home for Christmas holidays. Sometimes.key stages of projects had to take place in system downtime and the period over the holidays is just the time. If you work in a bank it can be hard to get your head around that as you work regular hours. One of our critics was a bank clerk.

We were accused of perfectism because they thought we felt no-one else could do our jobs as well as we do. This isn't the case, others approach the job in hand differently, but as long as it works effectively, is on time and within budget and the client is happy that's fine. However, at a certain stage in your career only one person of your seniority will be on the team otherwise it's simply too costly so, unless it's a catastrophic emergency, you don't dump a project at a critical stage to someone else, not least because you don't want them to do that to you. Again Mrs 9-5 Banker couldn't grasp that.

Accusing someone of being constantly down due to perceived failures is a judgement call made by a third party unless you admit to such yourself. If you don't feel that way, then why should you accept that's the case.

I have been in the position of being accused of this very thing by a neurologist. Apart from a letter saying I was diagnosed with ME and hearing from me what I did for a living he pronounced me likely to be suffering from prolonged stress as I worked in what he felt was a high stress, high pressure, highly technical role with a lot of responsibility. As you can imagine, we had quite the exchange of views ending in mutual agreement not to see each other again.

Right. Let's ignore the years of study, the years of experience leading up to being able to take on such a role, the team I worked with & relied on etc. Let's ignore that being a neurologist is as akin to my job as a fish is to a bicycle.

It is all, at the end of the day, a means of judging someone else, with no actual yardstick to measure them by. For example, if he had asked I could have shown the neurologist my copies of performance reviews and appraisals, my bonus record - none if which indicated an employee struggling.

If someone feels they can't cope or keep up that's s different thing and I wouldn't judge them for seeking help and changing their lifestyle.

Someone who happens to be sick being judged that way, based on nothing at all as ME patients can be, is an entirely different matter. It adds to the cumulative harms inflicted.

All I was saying is that if someone's ME/CFS deteriorates due to over-exercising, then no matter what the reason for over-exercising, it will be the physiological consequences of that over-exercising that is the problem, and nothing whatsoever to do with any psychological cause.

 

[Invisible Woman]

All I was saying is that if someone's ME/CFS deteriorates due to over-exercising, then no matter what the reason for over-exercising, it will be the physiological consequences of that over-exercising that is the problem, and nothing whatsoever to do with any psychological cause.

Apologies, if I misunderstood.

However, as someone who did overexercise in the first number of years this was more due to a complete lack of any decent available advice rather than being driven or perfectionism.

If the only advice you receive is to do what you can do, keep moving etc and there is an incorrect, preconceived notion that exercise - even if it's a tiny, tiny amount compared to what you used to do - cannot harm, where the onus is on you to prove you want to get well, then you will do what you believe is necessary to get well.

To then be assigned a perfectionist label because you following the advice given is unfair and wrong.

This happens to ME patients all of the time. It has happened to me in a number of ways over the years.

Another example is having a consultant chuck a fairly thick file of medical notes on the table and accuse me of attention seeking behaviour because I had been seen by several consultants. What he didn't know was that I had several arguments with my GP, telling him I was fed up to the back teeth of dragging my carcass to hospital appointments that were getting me nowhere and took weeks to recover from. In fact, my GP at the time was under investigation by the health authority for referring patients far too often & for no good reason to specialists.

It's hard to conceive until you've been on the receiving end @Barry, but 20 years ago this completely unfair and inappropriate labelling happened an awful lot. My own husband couldn't get his head around how unfairly we are labelled until he came to appointments with me.

The other injustice with this type of unable to cope, obsessive, depressive, perfectionism label is that, had I been lucky enough to have recovered within a couple of years, it would have had an impact on my career if a label like that appeared on my medical records. My employers took their duty of care seriously and I would have been obliged to undergo some from of unnecessary therapy or counselling so they could be sure I was okay to resume my usual duties. That's something that would have stayed in my personnel file. Fine if it was true, extremely unfair if not. This is something some of the long covid sufferers might end up facing today.

 

[Barry]

It's hard to conceive until you've been on the receiving end @Barry, but 20 years ago this completely unfair and inappropriate labelling happened an awful lot.

Yes I can fully appreciate that. It's all too easy at an intellectual level to think you are empathising with and understanding someone, but unless you have personally experienced that thing from inside, only then do you have any real insights.

I think my "outsider" perception is that two things get conflated, but are important not to:

• Where the BSP types like to promote the notion of perfectionist characters as being psychologically more prone to the false illness beliefs and behaviours they so love. They like to argue that perfectionism supports their notions of ME/CFS being an essentially psychological illness.
  
  versus ...
  
  
• Anyone with a tendency to "exercise through" their illness, especially if encouraged by "experts" to do so, is statistically more likely fall into the trap of ME/CFS - we know and argue that exercise is high risk for pwME. This aligns with ME/CFS being a physiological illness, worsened and maybe made permanent by exercise. No matter what the reason - ambitious nature, love of life, whatever - in this scenario the illness is physiological, full stop, no matter what leads to its propensity.

Conflation of these two things is the BPS crew's stock in trade as I see it.

I think I've rambled a bit but hopefully get my gist.

 

[Invisible Woman]

That's about the size of it @Barry. The good old heads we win, tails you lose.

 

[shak8]

Maladaptive perfectionism: I say to the shrinks, you have to have first-hand (or close family members) experience to postulate theories on ME, or you have to have more objectivity and open-mindedness for opposing thoughts, and you have to have empathy, lots of it. Those attributes are not easily found outside of dedicated clinicians, I would think.

Perhaps off-topic (I've been studying about Aboriginal history and culture) but all these judgmental terms, excellent pointing that out @Woolie, isn't this all very culturally determined?

As we have an extremely achievement-based Western culture, with huge inequalities perceived between people, something our stone age ancestors did not have so that we discount each others' subjective experience in a sort of caste system where the psychs continue to pour out nonsense from on high while ignoring real needs.

So, we are all maladaptively perfectionistic in this culture.

I bristle at these judgments made by shrinks; they may really believe they are on to something, but unless their research means real help for us, well, it's not good.

 

[Snow Leopard]

It is subjective though.

Taking health out of it for moment. If a person is generally thought to be have a maladaptive trait by others but they are happy and fulfilled then is it really maladaptive?

Yes, perception of "maladaptive" depends on who is making the judgement.
I prefer specific frameworks eg https://en.wikipedia.org/wiki/Manfred_Max-Neef but the interpretation is still going to be subjective.