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.
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.
(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.
Discussion here:New Zealand: Dr Vallings' view on the personality type of people with ME
