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

Me too. Surprised to see its reanimated corpse here.

 

In the days before CFS the general feeling seemed to be that ME was more common in people who were not able to rest enough when they became ill. This included medical professionals, teachers, mothers of young children and students, who were also people who were exposed to lots of bugs. The combination meant that ME was more likely but it was not seen as being associated with a particular personality type. Simply, if you never overexert you won't experience symptoms! It was explored as a mechanism of disease, and maybe as a way to avoid it by having a convalescent period an old fashioned idea that was fast disappearing.

After CFS, Yuppy flu was said to occur in people with "second class talent but first class ambitions" The type A thing was used to attack us.

Later SW had the bare faced cheek to do a paper where he claimed that type A people were no more likely to get ME and where he implied that people with ME thought they were a special sort!

The number of ME patients is bound to be increasing because we NEVER GET BETTER. If only 100 people get it every year, after 50 years there would be 5000.

 

Psychosomatics has replaced religion as thing people turn to when there is no hope left.

What they have in common is that they both promise you'll be cured if you become a better person.

The reality is that getting ill had very little or nothing to do with being a bad person. We just like to think it did so that we can feel in control and see a simple way forward.

I would rather become a better person by trying to live according to reality how it actually is, not how we would like it to be.

As for the ME personality, I wouldn't be surprised if it existed in some form. I just doubt it is anything other than a consequence of the illness which makes ordinary activities difficult, and the social context it exists in, which includes horrific neglect and healthy people not being able to understand.

I also doubt that the stuff academic psychosomatic researchers publish is much more than their fantasies, built on several generations of researchers doing poor and misleading science, being guided more by a desire to distinguish themselves with outlandish claims than to actually do anything useful for patients.

 

Those who do tend to have a very different interpretation of what it means, precisely because they have been mislead about what it means. It may satisfy some anecdotally but no rigorous process that fully acknowledges what the model ever got significant support. It is baked into the ideology that the patient must be mislead about the true meaning because otherwise people reject it, as they should.

It's equivalent to false advertising. Some people do buy falsely advertised products and some will even say they are satisfied with it. But that can't be replicated in a rigorous process. That's why so much of the recent literature is built on this frustration, of consent and commitment being rejected unless they find the right deceit.

The expectation from professionals is that they would not do that, it's both implicit and explicit that it's unethical. That is the point of having experts governed by a code of deontology. Some sick people will trust medical professionals, even on BS explanations, because they can't imagine they would just lie to them. That doesn't make it right. If anything it makes it all even more immoral and disgusting, manipulation and psychological abuse from a position of statutory authority, for self-serving purposes no less.

And especially, that does not mean that the far larger % of ME patients who explicitly reject to consent to this BS should have to be subjected to it. Especially with dissent being simply dismissed as non-compliance, itself a moral black hole.

 

@Hutan just wow about Vallings. I had no idea!!!

Is there anything where this is documented?

 

It's not quite what Hutan talks about but there is this

http://www.drvallings.co.nz/who-is-at-risk.html

No references are given for her claims.

 

Interesting. Especially as Lilledalen as a psychologist doesn't seem to agree with her.

 

Is this a new idea? A presentation alone is sufficient to constitute scientific evidence? Surely that would be mere anecdote.

Looks like there needs to be a change of name to ANZMESS. The additional "S" could stand for "secret".

 

"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?

 

That sounds a lot like reversing causality. "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. Which is a perfectly normal and expected response. People with the exact same personality traits but who haven't found the same financial success would not be considered the same as successful "high achievers", because it has little to do with the actual personality traits, which are way more complex than this overly simplistic "you like to achieve things, uh?"

It's really disappointing to see the sheer mass of failures for correlation does not imply causation in medicine. All of this seems to go away when a random correlation, especially one that hides the true causative element, fulfills biases or provides an easy, convenient explanation.

Some people still expect scientific explanations to make intuitive sense. Somehow. It's seriously exhausting.

 

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?

So saying that it's 'driven' types that are vulnerable to becoming chronic with an initial illness that should resolve is to me like saying fish that swim are prone scale rot (or whatever). Once upon a time I think the general consensus was to recommend rest for a time. That is no longer the case and people have lives they want to go back to.

So for me the 'driven' comment is really moot. For all I know rest is moot too except as perhaps helping people who continue to be ill after initial infection be less unwell--which is not nothing of course.

 

It's not possible to tell from this observation if her behaviour played any role in getting ME. It could have made no difference as well.

I think there is the human tendency to look for explanations and speculate about ways a disease could have been averted because it's unpleasant to think that bad things happen to people for no good reason.

 

Of course, which is why I said 'think' and 'might'. I don't think it is proven either way.

 

As far as I understand this is more or less the only doctor in NZ somewhat knowledgeable about ME?

So I guess there might be a certain cohort of NZ ME patients who are able to find their way to her office, and other cohorts that are not. What she then states as a fact might be based on confirmation bias.

I just heard a doctor in the latest This Week in Virology-podcast say that the most fearful words to hear in a ward is "in my clinical experience..".

 

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.

 

It is so strange to believe in psychosomatics. Freud said he had figured out hysteria over a century ago and that he knew how to cure it. Why are all these cures not materializing? A century is plenty of time to refine and perfect the therapy.