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

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.
 
The following posts have been split from a thread on Grete Lilledalen

Lilledalen said:
"We must stop attributing illness and the absence of improvement to the patient's personality."
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rvallee said:
All it would take is to require any psychosomatic model to show objective evidence before it is treated as having legitimate medical significance and stop the way the field is exempted from the normal requirements of the scientific method and ethical requirements, the least of which is consent. Medicine without consent leads to disaster. Psychosomatics cannot exist alongside the consent of patients.
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I agree with your post @rvallee, except for that bit.

My experience is that plenty of patients are happy to go along with the unevidenced idea of a faulty personality. For example, Dr Vallings, NZ's only doctor specialising in ME/CFS and Medical Advisor to NZ's national ME/CFS patient support organisation, has said that people with ME have excitable personalities, have type A personalities and endorsed Partinen's views. Despite a complaint, she has never been censured for that and has been supported to make it impossible for people disagreeing with her to join the ANZMES Board.

At the 2019 ANZMES AGM, I asked what had happened with my complaint about Dr Vallings' statements as a year had passed. The President of ANZMES said that the complaint had not needed to be addressed because Dr Vallings had only been reporting what other researchers had said. At that point Dr Vallings stood up and said that she did stand by what she had said, she does think that there is an 'ME personality'. And still ANZMES has taken no action. Dr Vallings is not only the ANZMES Medical Advisor but every year is awarded scarce ANZMES funds to travel around the world attending ME conferences. She continues to endorse courses where people are encouraged to find the cause of the illness in their personalities.

The thing is, when everyone seems to be dismissing symptoms, it is a huge relief to find a doctor who is empathetic and says 'yes, your symptoms are awful' and who writes letters for welfare benefits. It's tremendously validating to hear that doctor on the radio saying that the illness is real. So, when she says that your personality is part of the problem, some people are willing to take that onboard.

And if it is just that you are a 'people-pleaser' or a Type A personality, perhaps that means that you can fix yourself and not face a life-time of illness.

There are plenty of people with ME happy to endorse the Lightning Process and Reverse therapy and all sorts of other woo based on the idea that we aren't thinking or behaving correctly. Psychosomatics absolutely exists alongside the consent of the patients.

That's a nice piece by Grete Lilledalen. I wonder if someone could polish the English translation a bit to make it better for sharing with an English speaking audience?
 
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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.
 
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Hutan said:
There are plenty of people with ME happy to endorse the Lightning Process and Reverse therapy and all sorts of other woo based on the idea that we aren't thinking or behaving correctly. Psychosomatics absolutely exists alongside the consent of the patients.
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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.
 
Thanks Grigor.

Dr Vallings' speech at the 2018 ANZMES AGM was videoed with the intention of putting it on Youtube later. Prior to her speech, earlier in the AGM, I was elected onto the ANZMES committee. 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.

I asked for the video to be viewed as I knew it would show that I had not been offensive or aggressive. One of the committee members also asked to see the video but it was not made available. The President and many of the committee weren't at the AGM during the part when Dr Vallings spoke. The well-respected researcher who was there was really surprised to hear about the allegations. He told the President that the allegations were without foundation. (It was incredibly bizarre - with respect to the researcher, we just had a pleasant conversation about his research programme and fundraising. The people who made allegations against me completely made them up).

However, it seemed that facts didn't matter and I was voted off the committee. The President said that it didn't matter if the allegations that I had been offensive and aggressive in the meeting were groundless, the committee felt that harmony was important.

Anyway, as far as I know, the 2018 video was never made public.

The 2019 ANZMES AGM was also videoed, but I'm not aware of it being made public either.

At the 2019 AGM, when Dr Vallings confirmed her belief in an ME personality, she said that she had researched the topic many years ago and had made presentations about it overseas. So perhaps there is some record of those presentations.
 
Hutan said:
At the 2019 AGM, when Dr Vallings confirmed her belief in an ME personality, she said that she had researched the topic many years ago and had made presentations about it overseas. So perhaps there is some record of those presentations.
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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".
 
Andy said:
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.
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"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?
 
Andy said:
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.
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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.
 
Barry said:
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?
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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.
 
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..".
 
rvallee said:
Psychosomatics cannot exist alongside the consent of patients.
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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.
 
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