Clinical psychologist Grete Lilledalen about ME and CBT/GET.

"On the trail of a less inflamed ME debate."

Clinical psychogist Grete Lilledalen about ME and CBT/GET. Well worth the read and share!

"We must stop attributing illness and the absence of improvement to the patient's personality."

"Instead of building the stigma of "treatment resistance" and "victim blaming" one should look at whether treatment options can be improved and changed."

English: https://bit.ly/2Yax8uD

Norwegian: https://psykologtidsskriftet.no/debatt/2020/03/pa-sporet-av-en-mindre-betent-me-debatt



The link to the piece by psychologist Charlotte Ryhl is not working but it can be found here:

"Psychologists also have a responsibility for children and adolescents with ME."

English: https://t.co/0mRkMTJgKl

Danish: https://t.co/sdVsCxL4CD

Excellent as well!

 

A real breath of fresh air. A psychologist with her finger on the pulse. I wonder if @Brian Hughes may be interested in this. Also perhaps @PhysiosforME.

Interesting that Grete Lilledalen describes herself as a psychologist who is also a relative of an ME patient. The greatest insights for people without ME (and I speak for myself here as much as anyone) typically come from having real day to day understanding of a pwME. There is something crucial in that day to day understanding that scientific studies are very poor to glean, yet for ME is especially important.

 

In the second article I'm guessing something may have got lost in translation here ...

Given the rest of the article, did Charlotte Ryhl really say these children lack motivation? At least in the context it sounds like here? I'm guessing the sentence might need better translation?

 

I would say so. Considering the rest of the piece. Hopefully someone here can clear it up for us!

 

Yes, translate-error.

The original text actually say:
"They DON'T lack the motivation, but physical energy and....."

As the motivation is good/not the problem

 

That is exactly what I suspected.

 

Grete Lilledalen is superb and has written some other great texts as well about ME:

https://www.s4me.info/threads/news-from-scandinavia.647/page-44#post-224743

https://www.s4me.info/threads/news-from-scandinavia.647/page-41#post-211746

 

That would require ending psychosomatics as it has existed for decades. As long as psychosomatics continues to be treated as a serious topic, this can't happen. The only reason this happens is because of the "default" reflex and general beliefs in magical psychology on which psychosomatics operates.

I am 100% in favor of this. The whole thing is anachronistic nonsense that belongs right along ghosts and demons. It has caused nothing but harm, regress and suffering. I have personally been ruined by it, against my explicit rejection of this nonsense, which is deemed irrelevant because psychosomatics has deprived me of my agency, of my ability to testify to my life experience, a dehumanizing and cruel practice that serves no purpose other than propping up this wretched antiscience nonsense.

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. It also cannot show any evidence of anything. None of those exemptions are justifiable and they are the reasons why psychosomatics is a death machine that creates suffering in exchange for mediocre careers while propping up the alternative medicine industry.

This will inevitably happen with time. Might as well be on the right side of history, turn the whole thing upside down and work on the actual biopsychosocial consequences of illness, rather than its causes. Now that will help people. Finally

 

The other pieces are equally as impressive!

 

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.