Personality as a risk factor for ME/CFS and similar diseases

[rvallee]

Like @Hutan I agree with most of what you say, but I'm sorry to say I have met patients who do know what the BPSers mean, they do understand the implications and wholeheartedly agree and embrace it.

I have met some in person and online. More than happy for the whole thing to be down to & perpetuated by some past trauma.

You can't even have a conversation with them (at least the ones I had contact with about it) because while they claim that denial of a psychogenic cause specifically in your own case is denying it for everyone, at the same time it's perfectly fine for them to claim that as they believe their illness has a psychogenic cause then everyone else's must be too.

Denial, no matter how carefully worded, is perceived as a direct personal attack on an already traumatised person and you'll also find yourself accused of putting other victims off seeking appropriate psych treatment too.

People are strange.

You can find the same with homeopathy, scientology and every belief system under the sun. My point is that none of this stands up to formal scrutiny in a valid randomized sampling. It can exist as a vague concept out there, like ghosts and astrology, which plenty of people believe in, but it cannot survive as a legitimate scientific theory in rigorous experiments, where efforts are supposed to be made to prevent selecting for the few who would agree.

That a few people can be found to agree with anything doesn't make it ethical and scientifically valid, and even less that that consent can be assumed to apply to all, especially when it explicitly does not. It can exist as a thing, like reiki and other stuff, but not as a scientific discipline with clinical validity.

We unfortunately know for a fact that plenty of people will consent to drink actual bleach as a "cure" to a bunch of diseases, for which you can even find the odd board-certified licensed MD would support. It's important in medical research to not only be aware of the fact but also not to exploit it, which psychosomatics explicitly does.

 

[Invisible Woman]

I agree with what you say @rvallee, but sadly, sometimes these folks have very loud voices.

That a few people can be found to agree with anything doesn't make it ethical and scientifically valid, and even less that that consent can be assumed to apply to all, especially when it explicitly does not.

I agree. Unfortunately I have also been in the position where the conversation has effectively been shut down because, by playing the victim, the willing "past trauma" patient insists that their case can be assumed to apply to all.

In this situation an outsider or a newly diagnosed patient who knows no different is permitted to hear that one side of the story. Thus perpetuating the psychogenic falsehood.

Here someone with that view would be asked to explain and, as long as it's within forum rules, others would be free to post opposing views. That isn't always the case elsewhere online or in person.

In the BPS land of smoke and mirrors what some would like to be the truth carries more weight than what is the truth. Politics and personal motivation outweigh science.

 

[Snow Leopard]

To me the problem is that being motivated to get up and get on with life is pretty much the zeitgeist of our time if we're talking about developed economies at least. Life is pretty amazing with 'living life to the full' something to strive for. And there is so much that many can do and see and experience. Who wants to miss out?

The trap that Vallings and others are falling into is one of ecological fallacy. The patients they see are much more likely to be "driven" and dare I say it, intelligent than the average patient, due to participation/selection biases - less driven people aren't going to turn up in her office as much. Those same biases affect the make-up of forums like this too.
Anyway, these doctors assume incorrectly that the patients they see are somehow representative of the patient group as a whole.

 

[Subtropical Island]

The trap that Vailings and others are falling into is one of ecological fallacy. The patients they see are much more likely to be "driven" and dare I say it, intelligent than the average patient, due to participation/selection biases - less driven people aren't going to turn up in her office as much. Those same biases affect the make-up of forums like this too.
Anyway, these doctors assume incorrectly that the patients they see are somehow representative of the patient group as a whole.

Yes. Those who make it to her office are driven to find answers rather than just accepting either their condition or pseudo explanations like laziness, or simply being too unwell to do or say anything about it. Etc.

I went. And I liked being told that I was a type A, driven person. Because I have been/am in many contexts and because I was so frequently being told (or subtly gaslighted) by a few of those around me that it was my attitude that was the problem, that if I tried harder or better I would be better already. So having someone reputable say that it was obvious that I hadn’t just been too weak or stupid or unenlightened to recover, that actually it might even be my efforts to overcome it (when what I needed was to rest and pace myself) that made me more likely to stay sick, ...all of that was really welcome. A relief.

Not as the universal truth, but as an antidote to the story I was getting from others.

If someone is going to be typecasting me, I preferred Vallings’ version.

But as time has gone on and I’ve lived with this longer, I find myself wanting to strip back all this advice and clinical experience, and deep beliefs etc and just focus on what is known, what can be observed and replicated, and being entirely transparent about what is not known. Being very very clear that if something is not known that it does not create a vacuum for whatever theory you may have. It is simply not known until we can complete further investigations.

This is the only route to sanity. For me.

So I’m really appreciating someone who is in fact a psychologist (not just pop-psych) talking about this too: that we need to address actual needs with assistance and with approaches which we know can have some effect (much larger scale psychological needs that all humans have but may have different access to), ...and stop trying to apply pet theories and blaming patients when that unfounded theory doesn’t bear out.

wouldn’t it be wonderful if psychology itself as a discipline could undergo this process?: stripping back all the old ideas and just focusing on what we can prove - by prediction, intervention, results.
It might be a tremendously smaller body of “knowledge”, but far more Enlightened.

 

[Hutan]

Yes, @Subtropical Island.

If the hypothesis is 'not resting when you get sick is a risk factor', fine, let's work out an experiment around that and find out if it is true. There are a lot of studies trying to work out if people with ME/CFS are perfectionists or neurotic, I don't know if there are any addressing the idea that convalescence is protective.

The experience of my family suggests to me that if 'not resting when you get sick' is indeed a risk factor, then it is only a part of the story and not even a necessary part.

But let's assume just for a moment that 'not resting when you get sick' is indeed a major risk factor for ME/CFS. Even if that is true, it doesn't make sense to leap from there to focus on 'the Type A personality' being the problem. There are lots of reasons why someone may keep going when they become ill that have nothing to do with whether they are 'Type A' or not. A solo mother of two children under three may or may not be a driven high achiever with respect to work or education, but, regardless, she may need to soldier on when sick. A young person may or may not apply the same dedication when a bit sick to their work as they do to partying during a holiday on Ibiza.

 

[Hoopoe]

An illness that causes reduced exertion tolerance would lead to affected people often saying they did too much or worked too hard.

That can be misinterpreted as patients having a certain personality.

If a certain kind of patient is more likely to have negative encounters with doctors, that can be interpreted as that kind of patient having a bad personality. Maybe the negative encounter is due to doctors being trained to misunderstand and mistreat or other systemic problems in healthcare.

If a patient is fidgety and inpatient and seems nervous, we can again blame personality, or maybe realize that they're just orthostatically intolerant and not comfortable in the current situation.

I could go on.

 

[TiredSam]

"Those most susceptible are often busy "high-achievers" who probably find it hard to rest up during the onset of their illness".

Everyone finds it hard to rest up during the onset of an illness. This is not specific to ME sufferers. You get ill, you carry on. If it doesn't go away soon, rest a bit until you feel better (a few weeks at most), then get up and carry on. It's what everyone does, and it works for most illnesses, so of course it's how we behave when we first get ill and don't know it's ME and have never even heard of ME and even if we have don't know anything about pacing. It takes months or years to even know you've got ME, so in the beginning you just behave like a normal ill person with a normal illness. It's all very well blaming people in hindsight, and labelling them as "high achievers" in hindsight because they did stuff before they got ill.

Most people who find it hard to rest up during the onset of their illness haven't got ME and get better. How many of us, in our first week of ME, went to a doctor and were told "oh, you've got ME, you need to rest a lot"? Criticizing people for not resting enough at the beginning is completely pointless when there is no diagnosis or information available for at least the first six months, at which point you meet one of the criteria for ME rather than PVFS so your chances of getting taken seriously and receiving any help rise from 1% to 2%.

So leaving aside that most personality testing is useless humbug anyway, even if there was something in it, what's the point of saying "you shouldn't have been such a perfectionist who didn't rest enough"? For that to be at all useful there has to be a solution, for example every time someone goes to a Dr feeling exhausted they are immediately given an accurate diagnostic test for ME, a personality test, a leaflet on pacing and a course of psychotherapy to change their personality before it's too late, provided over the internet if you must, plus support from the welfare system etc etc.

Instead of that we have a pointless reproach in hindsight based on lazy assumptions and junk psychobabble. This woman is on our side?

 

[Sean]

Criticizing people for not resting enough at the beginning is completely pointless when there is no diagnosis or information available for at least the first six months

Context matters.

 

[Barry]

Everyone finds it hard to rest up during the onset of an illness. This is not specific to ME sufferers. You get ill, you carry on. If it doesn't go away soon, rest a bit until you feel better (a few weeks at most), then get up and carry on. It's what everyone does, and it works for most illnesses, so of course it's how we behave when we first get ill and don't know it's ME and have never even heard of ME and even if we have don't know anything about pacing. It takes months or years to even know you've got ME, so in the beginning you just behave like a normal ill person with a normal illness. It's all very well blaming people in hindsight, and labelling them as "high achievers" in hindsight because they did stuff before they got ill.

Most people who find it hard to rest up during the onset of their illness haven't got ME and get better. How many of us, in our first week of ME, went to a doctor and were told "oh, you've got ME, you need to rest a lot"? Criticizing people for not resting enough at the beginning is completely pointless when there is no diagnosis or information available for at least the first six months, at which point you meet one of the criteria for ME rather than PVFS so your chances of getting taken seriously and receiving any help rise from 1% to 2%.

So leaving aside that most personality testing is useless humbug anyway, even if there was something in it, what's the point of saying "you shouldn't have been such a perfectionist who didn't rest enough"? For that to be at all useful there has to be a solution, for example every time someone goes to a Dr feeling exhausted they are immediately given an accurate diagnostic test for ME, a personality test, a leaflet on pacing and a course of psychotherapy to change their personality before it's too late, provided over the internet if you must, plus support from the welfare system etc etc.

Instead of that we have a pointless reproach in hindsight based on lazy assumptions and junk psychobabble. This woman is on our side?

I confess I'd not read it in detail, and missed the notion patients were being blamed for aspiring to high achievements. Like I say, when I had glandular fever I was instructed very firmly to rest and to do a lot of it. If there is any blame to be attributed it would seem to be toward the medical establishment for not providing similar advice to others.

 

[Mithriel]

"Those most susceptible are often busy "high-achievers" who probably find it hard to rest up during the onset of their illness".

I may be taking this out of context (not sure) but to me that comment seems to fit with what I think may have happened with my wife. She had had an operation, and came down with a horrible flu bug literally the day after her operation. In retrospect, if we'd known then what we know now I would have done my damnedest to make her stay in bed and rest up for at least a week, and probably to do a stint of light duties for some while after. But my lovely wife, being the press-on-regardless-and-get-back-on-your-feet-as soon-as-humanly-possible sort of person she is, insisted on getting on and doing stuff with barely a single day's rest after her operation, even though she still had this ghastly flu bug. It was only as she failed to recover properly that it became apparent something else was going on ... eventually leading to her ME diagnosis.

I really do think she might have escaped ME had she been a lot less driven to get on with her life so quickly, but instead been happy to accept the need to lie up for a while and do nothing. In this sense I feel that people who are highly driven are far less likely to take the rest and recuperation needed, which may be so crucial to avoiding ME.

Am I missing something here?

In the epidemics it was active people who became ill, staff, not patients and in a teaching college the students became ill, the nuns did not. Since the disease was prevalent among medical staff, teachers and mothers of young children (fathers did not do much child rearing in those days!) the hypothesis was that the stress of not being able to rest when ill combined with being around lots of infections, let the virus, assumed to be an enterovirus, get deeper into the body where the immune system could not attack it so well.

In Polio tennis players had damaged arms, football players damaged legs, so there was a certain amount of evidence. Like everything else in ME it remained anecdotal because no one ever came up with research money.

The whole idea of convalescence fell out of fashion along with the downgrading of infections to trivial because of widespread antibiotic use and with a new generation of doctors being given less and less educating in microbiology.

This somehow all became translated into driven personalities or type A when it began as a biological idea not a psychological one.

 

[rainy]

"High achievers" are essentially defined by having demanding jobs that aren't easy to just keep coasting. So they can't just "rest", not because they're "high achievers" but because they get penalized for doing so.

Same for children and teenagers being forced to keep attending school and after school activities when we got ill. Then we're told we got ME because of our good-girl-personality, when it was the adults around us that forced us to push ourselves and we had no other option.

If they are going with the theory that lack of rest early on causes ME, I wish they would put the blame where it actually lies (work, school, doctors, stigma about being ill...), not with the patient's personality.

 

[chrisb]

The result of me asking a polite question about the evidence for an ME personality was that allegations were made that I had been offensive and aggressive to both Dr Vallings and a well-respected researcher, and I was asked to resign.

My post is off topic and I do not wish to derail the thread but I would like to posit this idea for people's contemplation. Is this wholly inappropriate response to a problem driven by an awareness of the CMRC constitution in its early form. There seems an eerie similarity to the much trumpeted approach of someone who shall remain nameless.

 

[2kidswithME]

@Barry commented about his wife’s experience post surgery and his own post glandular fever. I wonder if, in his wife’s case, (unlike his) the medical people may also have pushed for returning to normal activities quickly, ignoring that she had a nasty bug?

Times have changed and whereas maybe 50 years ago being allowed or actually encouraged to take time to convalesce was the norm, now it isn’t.

Four decades ago, in my youth, I had major surgery (a bone graft in my femur), and I wasn’t made to get out of bed for 48 hours afterwards, and then only with support for short shuffles (with crutches). I spent a full week in hospital before going home to spend weeks doing very little while it mended. It was accepted it would just take time, and my main challenge was to not trip or fall and damage my leg as it healed.

Times have changed, and IMO not always for the better. How many have been harmed by pushing through, as per advice, and then blamed for it? Not just people who were tipping into ME, unbeknownst to them, but others as well?

 

[Barry]

@Barry commented about his wife’s experience post surgery and his own post glandular fever. I wonder if, in his wife’s case, (unlike his) the medical people may also have pushed for returning to normal activities quickly, ignoring that she had a nasty bug?

No I'm afraid not. The doctors did not really offer any advice either way. But my wife is always driven to push through where she can. These days she moderates this more, so she paces very well to make the most of what she can do. But in those days in such situations she just pushed through to her absolute limits, and was part of how she never let things beat her ... except I now wonder if that went badly wrong in this case.

 

[Joan Crawford]

Hi, great thread.

If i get a chance I'll look up Grete Lilledalen. Thanks for the heads up.

I've only had time to skim but a few comments:

pwME generally describe full active lives - like everyone else - before getting ME. Some will detail not being that much bothered with ambition and so forth too. ie. they are 'normal' people who got ill. The idea that they are more driven etc is I think a belief of the doctors to try and understand why some people get sick when others don't. I see this all the time in NHS physical health clinic and private practice. Also, patients tend to share about how active they were as a defense against being seen as lazy. They pick up that social meme from those around them and society at large and can internalise it. When this gets explored people are really, deeply hurt by it. And of course there is no evidence at all that pwME or chronic pain are lazy - they are in pain or have incredibly debilitating conditions.

People on the whole are loss averse and will work like crazy to try and maintain their lives when they get ill. This is what most people will do in the face of loss(es). With ME that can be a disaster. This also happens across other chronic health conditions and can lead to incredible feats of endurance to keep going in the face of increasing symptoms and pain. Awareness of this often helps - before adjustment can begin. And that often depends on how much resources people have. It's a very difficult tasks and huge ask to adapt and adjust to living well with ME, chronic pain, FM and so forth. At best patients can approach acceptance - but the resources patients have for this will vary day by day and the amount of support and resources they have.

I hope that makes sense. I'm writing quickly as i need to get back to other things.

Great thread.

Joan Crawford
Counselling Psychologist
UK

 

[Kiristar]

I confess I'd not read it in detail, and missed the notion patients were being blamed for aspiring to high achievements. Like I say, when I had glandular fever I was instructed very firmly to rest and to do a lot of it. If there is any blame to be attributed it would seem to be toward the medical establishment for not providing similar advice to others.

Sfair I was given standard "rest and a lemsip" type advice for my ebv from my GP when I had it at 20.

Fast forward 25 years and even after major abdominal surgery and hospitalisation for a week from contracting viral meningitis, I was literally told by the consultant that I would be "fine in a week" and discharged despite the fact that I had lost 8‰ of my body weight was slim to start with and couldn't even walk!

So my illness was not really taken seriously by them so I followed their lead and expected to be well in the time frame I was told.

Then I tried to go back to work in the time frame I was told to by the operating surgeon (6weeks) and I collapsed and needed twice that to even make it through the door.

So Dr's attitudes do anecdotally seem to have changed more to advising people to tough it out and they'll be fine, even after quite serious illness.

Then I had occupational therapy involved and I came under constant pressure to return ASAP. A return to work plan was developed that said it was flexible on increments but in reality was similar to GET and I felt pressured to stick to it.

Anyway I then lasted six gruelling months at half time before collapsing and progressing the ME I hadn't know I had (I was waiting on a referral , and definitely didn't yet remotely understand pem) into permanent severe grade illness.

So I used to feel guilty for pushing through but I guess when you look at it I was more guilty of just being a pretty conformist personality type and just conforming to society and medical expectations (or at least attempting to), which was more or less "rest as little as possible before getting going again" with no tolerance for needing more time.

Then when I had the temerity to feedback to the hospital about the advice and suggest warning patients to not push through,I was gaslit and my illness was quite deliberately psychologised with a superfluous FND label ("on principle because mecfs is a subtype of FND" designed to discredit me in revenge and self protection .