New Zealand: Dr Vallings

Hutan

Hutan

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At the Association of New Zealand ME Societies (ANZMES)'s AGM on 10 November 2018, Dr Ros Vallings presented an ME Research Update. Dr Vallings is the Medical Advisor to ANZMES and is the only specialist ME doctor in New Zealand. A summary of the AGM itself is on the New Zealand thread.

One of her slides focussed on Dr Markku Partinen's research, which he presented at the 2018 IiME conference last May. Dr Vallings praised his presentation and ideas. I've covered Dr Vallings interpretation of his idea that vagal nerve stimulation may be useful for people with ME in this Singing and Gargling thread.

Here is the Invest in ME C13 summary for Dr Partinen. His presentation sounds a lot more complex than what Ros presented.

In 1934 there was a publication by Lapage that used the term “Autophilia” and Dr Partinen theorises based on this paper that due to reasons such as genetics, microbiome, pregnancy, infancy some people develop autophilia.

These are the persons that develop autopathias (allergies, atopy etc.), spasmophilia, neurological symptoms and psychiatric symptoms (e.g., anxiety is a problem in the autonomic nervous system). In ME one can find all these symptoms. In childhood these patients tend to be sensitive, flushing easily, experience fainting, travel sickness and nosebleeds. They are often lean and catabolic and have lower resistance to infections. As adults they are emotional, sensitive, excitable, mentally active, creative, culturally active and sporty.
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(Autophilia means what you'd expect - self-love, narcissism, sexual attraction to oneself.)

Anyway, Dr Vallings didn't give us all that detail but she did tell us that people with ME are like dogs and sportspeople - we all sleep lightly, always in a state of alert. And that we have 'excitable personalities'.

One person in the audience did question the assertion that we have excitable personalities, saying that there was no good evidence that people with ME have any particular personality or that personality traits have any direct relationship with developing ME. Dr Vallings replied that there is lots of evidence and it's in line with what she sees in her clinic. The questioner noted that studies into the personality flaws of people with ME have many fundamental problems and that it is important to have good evidence before labelling all people with a particular personality type that might make it harder for them to advocate for themselves.

Many in the audience then supported Dr Vallings, saying that having an 'excitable personality' shouldn't be seen as a bad thing, that it just means that people with ME strive to achieve things. The Q and A session was moved on to the next question.

After the meeting, Dr Vallings was asked if she could say what the evidence was for people with ME having excitable personalities. She said that she sees a lot of people with ME and it is clear to her that they have this type of personality. She said that many of the people she sees are sportspeople and other high achievers. She said that the papers on this are quite old now and there hasn't been much done recently because everyone is now doing biomedical research.

She did not accept that there was any problem in labelling all people with ME with a personality type. She said that she herself would not have used the word 'excitable', she would say 'busy'. When it was put to her that, in that case, it is important to explain to people when she presents her slide that the word 'excitable' is not correct, she said, 'Oh, but it is right, I do agree with it'.

The questioner then asked Dr Vallings to please email the relevant studies.

A person nearby, a researcher into ME, admonished the questioner, saying 'don't be so sensitive'. He explained that he had a first class honours degree and had been playing sport at a high level and without doubt his personality and the way he lived his life had resulted in him developing ME.

minor edits to remove some editorialising.
 
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Hutan said:
(Autophilia means what you'd expect - self-love, narcissism, sexual attraction to oneself. :confused: Honestly, it would be hard to make this stuff up...)
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I thought it was going to mean people like Jeremy Clarkson. Oh...hang on....

It is starting to sound like 1990 all over again. It was in part the beliefs that a section of the patient population had about themselves, and their illness, which made it easy for the psychiatrists to spout equal nonsense.
 
There's lots I'd like to respond to about that interaction.

1. The evidence for excitable personalities
There are plenty of reasons why the studies suggesting that people with ME have particular personalities and the perception of clinicians on this topic could be flawed.

a. the problem of retrospectivity
The Dubbo study is one of the few prospective studies that looked at characteristics of people suffering one of three illnesses known to result in CFS in some people. It did not find any psychological characteristic separating those people who developed CFS and those that didn't. I'm not sure what characteristics were examined though. Unfortunately there haven't been enough prospective studies.

Studies that try to describe the personalities of people with ME are confounded by the fact that having a life-changing illness that few people believe is quite likely to change how a person interacts with the world. Another issue is that a symptom of the illness is a lack of energy, and it is difficult to self-regulate emotions when you have no energy. Another issue is that the person may have lost support structures, financial security and roles that give self-confidence, making it harder to deal with the world with equanimity.

There are problems if people are asked to describe their personality and life before the illness too. Some may make their old life sound extremely busy and full in order to counteract any impression that they are lazy or just want to lie around. Some may drink the BPS Kool-ade and search their past hard to identify stressful events and problematic behaviours to try to explain why they became sick.

These problems can also occur in the clinic. A person who has been looking for answers for years and has lost a great deal may be feeling quite emotional when they finally get to see someone who seems to understand and is encouraging. This is particularly true for people with ME in NZ if they are exhausted from travelling a long way to get to the only ME doctor in the country. The way a person presents to medical staff now may not give an accurate idea of their personality prior to illness onset.


b. Selection bias
The people who participate in research looking at the personalities of people with ME will not be representative of the broader ME population. They may be accepting of the view that people with ME have some personality flaw. They are likely to be well-educated and relatively high-achieving and determined to find a solution to the illness that has disrupted their life.

This is also true of the people that are able to get to the only ME clinic in New Zealand.

c. Assessor bias
It's very easy for personalities to be assessed incorrectly when someone has a prejudice and a desire to find a particular thing. The studies researching personality done by BPS proponents find character flaws in people with ME; the few studies done by non-BPS proponents do not.


 
Astonishing. For the record, I don’t believe personality type has anything to do with development of ME/CFS. But I wouldn’t be surprised if response bias played a role in any research claiming this. It would be understandable if, when asked, people with a stigmatised unexplained illness felt compelled to answer ‘yes’ they’re highly driven ‘type A’ personalities.

In childhood these patients tend to be sensitive, flushing easily, experience fainting, travel sickness and nosebleeds. They are often lean and catabolic and have lower resistance to infections.
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Ha! I’m yes to all of these, except the fainting...
 
Hutan said:
There are problems if people are asked to describe their personality and life before the illness too. Some may make their old life sound extremely busy and full in order to counteract any impression that they are lazy or just want to lie around. Some may drink the BPS Kool-ade and search their past hard to identify stressful events and problematic behaviours to try to explain why they became sick.
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In other words, the appearance of a consistent pattern of pre-illness personality may be driven by a persistent pattern of patients being perceived as lazy and unambitious, which in turn may result from the effects of the illness.

I like to point out that I was happy and had good grades at school before my illness onset. In part to inform the other person that my life suddenly changed, in part because I then had a lot of problems with school attendance, in part because I find it unfair and incorrect to be labeled as lazy.
 
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(can you tell I've been thinking about this a bit over the weekend?:))

The conflation of excitable personalities with Type A overachieving
It was clear that both Dr Vallings and a lot of the audience have mixed this idea of the excitable personality with the Type A overachiever/elite athlete. To me, they are quite different things as most high achievers I know are focused and determined. Athletes in particular are willing to spend long hours on boring training and to take instructions from coaches. One thing they are generally not is 'excitable' in the sense of being flighty or hysterical.

Many people with ME seem to participate in finding character and behavioural flaws in themselves. If they can identify the dysfunctional behaviour that led to the illness, then they can work on fixing it in order to recover. [paragraph edited]

It is quite easy to imagine why Dr Vallings sees so many sportspeople. Sportspeople measure their performance and even tiny drops will be identified and have career-ending consequences. So sportspeople with even quite mild cases of ME/CFS will quickly try to get professional help and will probably have the resources to do so. This is true also of people with other extremely demanding jobs. However, some stay-at-home mothers or the middle aged ladies whose biggest exercise is housework may not have that clarity when the illness is mild. When they go to the doctor they are likely to be told that they just need to get more sleep or that they are stressed or depressed or menopausal. They are less likely to end up at Dr Vallings' clinic.

(Edited to recognise that some stay-at-home mothers also have very demanding jobs, I just mean when people are operating at very high levels, it's easier to notice a relatively small reduction in capacity)
 
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The only personality trait that is claimed to be often present in ME/CFS and that I have is a tendency towards perfectionism (in the sense of spending a lot of time and effort to obtain a good result and setting high standards for myself). That was present long before the illness, but it seems to have become more noticable. But it might not really have become worse, it could be that it's merely more noticable becase my ability to spend time and effort and obtain good results is so much worse.

I don't see how this could cause or perpetuate ME/CFS. At most it would be one in a long list of factors that lead to patients overexerting themselves early on in the illness. Ironically, according to others I also give up too quickly and easily and should learn to push myself more. The messages I receive are a bit contradictory.
 
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These ideas have consequences

Labelling people as 'excitable' isn't just annoying. It undermines our ability to argue against stupidity. It even undermines our ability to believe what our bodies are telling us. Excitable is only a stone's throw from hysterical.

Labelling people as 'excitable' or 'Type A' makes us sitting ducks for expensive quackery that claims to fix us.

There was a young boy in the meeting with his mother - I'm sorry that I can't remember his age well, but let's say 13. He was sitting there, with an illness he and everyone else can't understand, listening as Dr Vallings confidently told the audience that people with ME have excitable personalities (and other things like people with ME die earlier because our telomeres are shorter - as far as I'm aware that was one small study). Does that make it easier for him to deal with the illness and live his life?

Promoting unproven ideas as fact can result in funds being wasted on silly studies, and valuable studies never being funded. I'm not against a hypothesis that people who are unable to rest when they get a viral infection may be more likely to get ME. But people don't have to be excitable or pathological go-getting strivers to do that; laid-back mothers of young children also have to keep functioning through illness. So, study the activity that might actually be the pre-disposing factor - the lack of rest during a viral infection - not a supposed personality type.
 
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OK. Sorry for all that, I had to vent.

As I told the mod team when I got home from the meeting, I am very thankful for this forum and the help it gives us to question what ME experts tell us. It must have been much more difficult to have this illness before we had the internet.
 
Hutan said:
OK. Sorry for all that, I had to vent.

As I told the mod team when I got home from the meeting, I am very thankful for this forum and the help it gives us to question what ME experts tell us. It must have been much more difficult to have this illness before we had the internet.
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Thank you for venting.

As a ME expert, and she has been ‘it’ in NZ for a long time now, she had the responsibility to shield the patients from the BS. She did not do that today. She was part of the BS.
 
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Hutan said:
(Autophilia means what you'd expect - self-love, narcissism, sexual attraction to oneself. :confused: Honestly, it would be hard to make this stuff up...)

Anyway, Dr Vallings didn't give us all that detail but she did tell us that people with ME are like dogs and sportspeople - we all sleep lightly, always in a state of alert. And that we have 'excitable personalities'.
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Sheesh, with "friends" like that, who needs enemies? :arghh:
 
Hutan said:
She said that the papers on this are quite old now and there hasn't been much done recently because everyone is now doing biomedical research.
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Dr Vallings, if you should be reading this, very sadly, you are incorrect. Check out our Psychosocial Research sub-forum sometime.

You are most welcome to join us here, to clarify if I have mis-interpreted what you said in any way or to provide evidence that supports your views.
 
Why Ineffective Psychotherapies Appear to Work: A Taxonomy of Causes of Spurious Therapeutic Effectiveness
https://pdfs.semanticscholar.org/a7b7/3212b3edcfc4ba62ebc03920e92ad5c6f7e3.pdf

It lists naive realism, the assumption that the world is precisely as we see it, as one of the causes. This isn't unique to psychotherapy research. It's human nature.

So someone could be convinced that ME/CFS patients have certain personality traits because it looks precisely like they do. But the way things appear is a function of both reality and our own perception, which is biased and prioritizes some things over others.

Yet if you dug a little deeper and explored all possible reasons why it might appear as if patients had particular personality traits, you could come up with several plausible alternatives.

At the very least, to say that patients tend to have a personality trait we would need prospective studies, because the illness itself could (perhaps in complicated ways) lead to the appearance of certain personality traits.

My guess is that almost none of the "personality trait associated with CFS" kind of studies are prospective.
 
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As adults they are emotional, sensitive, excitable, mentally active, creative, culturally active and sporty
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It's the kind of vague, easy to fit to any person bullshit I would expect from a horoscope or Briggs-Myer personality test. I mean who couldn't be considered to be mentally active in some way? That could apply to a Nobel prize winning physicist, a crossword enthusiast, a chronic daydreamer or just anyone not clinically brain dead and I'm not sure what kind of useful comparisons you can draw between them.
 
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Wessely planted his 'get-out clause' on this nearly 20 years ago: https://www.ncbi.nlm.nih.gov/pubmed/10616232
J Psychosom Res. 1999 Oct;47(4):385-97.
Personality and social attitudes in chronic fatigue syndrome.
Wood B, Wessely S.
Abstract
One hundred one chronic fatigue syndrome (CFS) patients attending a specialist CFS clinic were compared with 45 rheumatoid arthritis (RA) patients on a range of standardized questionnaire measures, to investigate whether CFS patients are characterized by particular personality traits or social attitudes. No differences were found between CFS and RA patients in measures of perfectionism, attitudes toward mental illness, defensiveness, social desirability, or sensitivity to punishment (a concept related to neuroticism), on either crude or adjusted analyses. Alexithymia scores were greater in the RA patient group (p<0.05). Social adjustment, based on subjective assessment of overall restriction in activities and relationship difficulties, was substantially poorer in the CFS group (p<0.001). This was highly associated with depressive symptoms, but remained significant even after adjusting for depressive symptomatology. There was no evidence from this study of major differences between the personalities of CFS patients and RA patients. The stereotype of CFS sufferers as perfectionists with negative attitudes toward psychiatry was not supported.
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[It's #107 in the Wessely files, if you want to see the whole thing]
 
I wish she was strange in not distinguishing between anecdote and science.

This would only be interesting if someone conducted personality tests on a large population of people without ME/CFs or a family history of ME/CFS or any related conditions (eg EDS) and found it a good predictor of how likely one was to get ME/CFS later in you life.

Any study done after the event would at best be describing a symptom.

And it does not sound like she has employed psychologists to do properly validated personality test.

And yes, if it were true what use would this information be to anyone with ME/CFS. It would only be of use to anyone presumed to be at greater risk of getting it if we also knew enough to be able to avoid getting it.

(BTW I find Dr Jacob Teitlebaum's and Dr Sarah Myhill comments on personality just as irritating. )
 
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