Video clip of a Australasian conference on MUS, mentions ME.

Labelling patients as "dependent clinger, entitled demander, manipulative help-rejecter, self destructive denier" reveals an attitude that does not favor good patient-doctor relatonships or empathy.

The psychosomatic belief system seems to perpetuate itself in part by presenting itself as the solution to dysfunctional doctor-patient relationships that it helped make dysfunctional in the first place by negatively stereotyping patients in various ways. The idea that there are somatising patients that waste time and misbehave by refusing to admit that in reality they have no illness but psychological problems is one such negative stereotype.

 

He uses those in the same way as SW: It's others describing such patients as those things, honest! I'm the one with the empathy for patients and telling patients their illness is real!

 

I understand the studies so far showing abnormalties are scientifically still weak. I note the American doctor who answered made bold, unsubstantiated claims that the pathology exists and it’s in the supposed feedback symptoms between brain and body. As you said the important point is these bps supporters refuse to acknowledge their treatments CBT and GET/exercise rehabilitation do not treat the disability in ME.

 

CollegeHumor.com presents: The Four (Wo)Men You Will Date your Freshman Year

 

In this other video from the same congress, Dr Chris Kenedi explains how, according to him, Chronic fatigue is triggered by a virus in vulnerable persons:

https://www.youtube.com/watch?v=uR5HXEoHTaA

Starts around 20:40

“This sort of explain chronic fatigue. You get these patients and they have this hyper arousal state they live, and they're very functional and they go through, they use this hyper arousal to their benefit. They're often quite high functional and engaged. And then they get an infection, a normal virus and that's what, you know, so many patients tell us “oh I was fine until I had this virus” and the virus becomes this key point.

And what does the virus do? it up regulates their immune system, the cytokine release goes through. They feel like crap, they feel all these pains because of this hyper arousal there. They feel more pain in every joints at a higher degree, and we know this from quite a few studies in Germany, that people with increased inverse childhood experiences, people with functional disorders oth feel pain at higher rates and can tolerate pain less than people without adverse childhood experiences and without functional disorders.

And the cytokine release and feeling like crap, and the joint pain and all the symptoms of the virus trigger their sympathetic nervous system, it triggers their limbic response, their fear response “maybe something bad is happening to me”. Their cognition is 'oh, I just have the flu, this sucks, I'm just down, I'm feeling vulnerable” But the emotional mind, the uncounscious mind is shrinking “alert, alert, alert, there's something going on, there's something wrong”.

And it triggers that sympathetic nervous response. And that over activates the immune system and leaves the immune system to secondarily lead to over response. And it leads to a disrupted feedback flow whereas most people, when the virus is gone, the immune system down regulates. But for some of these patients who get caught in this triggering system, they start to feed each other. And the nervous systme feeds the immune system, feeds the responses and the nociceptive system and you're off to the races. And this never subsides. And they live in this constantly triggered state that they're responding to their environment in a way internally trough that hyper arousal; And that's an example of trigger on a vulnerable, vulnerable person.

And there're maintaining factors. They will have maladaptive beliefs. Maybe they'll go online and they'll read about adaptive pacing or take it easy or go through, just the same way with back pain, whereas we know that patient who have back injuries who lie in bed are less likely to recover and take longer to recover than patients who engage in motion. You get a similar kind of problem. These patients with fatigue and functional symtoms tend to engage in activities that maintain their symptoms and maybe get unecessary labels and unecessary explanations and perpetuate these beliefs. And if they don't, we tend not to see them, right. So by definition, we're seeing the ones who are inherently oriented towards maintaining them”

And 7:50

"Key take home message to understand: what we've learned over the last ten or eleven years, primarily in Europe I have to say, is that all functional disorders are the same, that they present in different ways, but they're related to the same neuroanatomy and neurophysiology. It does not matter if you have chronic fatigue, fibromyalgia, chronic pelvic pain […] irritable bowel syndrome or gastroparesis. These are the same disorders that relate to disruption in the feedack system between the anterior (?) the prefrontal cortex and the lymbic system and the organs."

 

Good grief! Sounds like he’s of the magical thinking LP ilk. I find it disturbing and disappointing. He has a fair few assumptions going on there!

 

Can anyone explain to me why these adverse childhood experiences wait for twenty five to thirty years before preventing recovery from a virus? Let us assume a presumed adverse event before the age of ten. Let us also assume that patients are exposed to several viruses each year - that at least was the assumption given for non acceptance of the post viral model. The patient may have been exposed to hundreds of viruses without long term effect. How does his model explain the sudden choice of this particular virus to display such recalcitrance in recovery.

 

Yes, assumptions claimed to be recognised facts. Hypotheses presented as proven mecanisms.

 

I am afraid that scientists frequently persist with studies that are meaningless. So we cannot say they must be of value because people do them.

And if none of them is reliably repeatable then they should not be used as supportive evidence because they may well prove to be artefacts. We do not actually know that multiple systems in the body are affected other than that symptoms are felt in many places.

Like everyone else I would like to think these studies may be picking up hints. However, my impression is that much the most likely effect on mentioning studies like this to doctors is that the doctors will feel that their suspicion that ME is all about false beliefs is confirmed.

 

That exposes the nonsense base of his thinking.

I think people who think this way will always cluster together and convince each other they are right. The task, I guess, is to stop this nonsense keeping out into routine healthcare.

And it is not so much that what these people speculate is impossible. It is just that they have no concept of how to gather reliable evidence for what they already believe.

 

Exactly. He is entirely wrong in his theories about me, too!

I was affected by food poisoning and/or virus I was bed bound a few days, then weak and exhausted (housebound) - I recovered and resumed work and life.

I was affected by Krypto Sporidium in the water supply - guess what? I pushed through it, regained fitness and work and life!

When I got ME I (like you) pushed myself back to work - this time I struggled, it was different, nothing was coming back - no energy - no nothing! I got sicker and sicker.

My experience is the reverse of their theories too.

 

Their theories depend on assumptions, never tested, about their patients which a simple history taking would correct. One patient with documented proof that they exercised but did not become better invalidates everything.
We could have a long debate about large campfires being lit in the arctic causing ice fields to melt rather than global warming but all that is needed is to look and see if there are any.

I did not realise what the doctors were thinking when I was "assessed" in hospital but if they had been straightforward with me I could have given them proof that I was not doing what they said I was (I did a lot of walking and did not rest much)

This line is sneakily put into the talk. Easy to miss, but anything that needs an "unconscious mind" to work is pseudoscience. It is unfalsifiable and untestable so meaningless. It gives the impression the speaker is not accusing the patient - they are not deliberately making themselves ill - but it is patronising and offensive. It is a way to be horrible to your patients while denying you are abusive. (I have to smack the little woman for her own sake or she will give in to her fears and be worse off)

 

Especially when he makes the "unconscious mind" say the exact contrary of what the person really says. The possibilities are endless, you can make the unconscious mind confirm literaly any of your theories.

 

I once asked a psychiatrist why my subconscious mind should want the exact opposite of my conscious mind but he had no answer, or maybe he didn't think I was worth arguing with. He had proclaimed that my subconscious mind did not want to work! He did not ask my conscious mind why I disagreed with this. I could have explained that staying at home with 3 young children was tiring and boring while my mother would have been quite willing to look after them while I did something with all the qualifications I had spent years acquiring.

 

Another problem with their theories is the dependence on "adverse childhood events" For one thing it smacks of Freud and psychoanalysis where they will search for the "event".

How many people could dredge up an adverse event? Very few people get to adulthood without something veering from the ideal - death of a grandparent, moving school, bullying, divorce, illness the list is endless. How do you know when you have found the event and who judges that the event was bad enough?

It is an indirect measure of the "hyper arousal state" they claim we have. They have not proven that any random adverse event leads to this and they have not proven that having it leads to MUS and they have not proven that we have it anyway!

 

I wonder if he realises that anaphylactic shock is triggered by peanuts in vulnerable people.

Its just a peanut for god sake, just a normal peanut!

How about epileptic fits triggered by strobe lights? Just a light, just a normal light!

Celiacs and their diarrhea, gas, fatigue, weight loss, iron-deficiency anemia and constipation? Just from bread, simple bread?!!

 

There was another thread a while back with a presentation in it that had a list of these "adverse childhood events", and it had everything from being abused to "falling out with a friend". Absolutely anything goes.

 

That little laugh from the female, right after the questions is asked - says it all, doesn't it...?

It actually really got to me, stepping away from this thread for now.

 

It’s infuriating because if they listened to actual pwme the repeated refrain is people sharing they kept trying to push through whilst just getting worse and worse. It’s just the same nonsense about ‘chronic fatigue’ (criteria is always v loose) that has been pushed since Wessely.