ME/CFS and Long Covid - Digging Deeper 7-8 May 2025 | Stavanger | Norway

[Midnattsol]

This is one of the few presentations I’d be happy for my doctor to watch (or an ME/LC-child’s doctor, which is more the target group here). It might be worth editing out the couple of conference specific references and promoting the video for medical education. Or even do an English version (the subtitles are excellent but quite a few people seem to be allergic to subtitles)

I also like the tactical pragmatic step of acknowledging the BPS approach as being useful in the same way it can be useful in any other chronic illness like for example arthritis, while also pointing out it’s being misused to misrepresent ME as psychosomatic

That view may be a little controversial here. But whatever we might think of BPS, the fact is many health professionals genuinely believe BPS is all about supporting the patient in all three ways and it’s a major part of their professional identity (even if some don’t always practice in as holistic a way as they think they do). So dismissing the BPS model as incoherent is just going to put their backs up, which won’t help patients. Gently nudging doctors away from psychosomatics and towards the supportive aspects that are part of the ‘benign understanding’ of BPS - the one they already believe in or believe they believe in - is more likely to work and create a reasonably positive experience for their patients

His lecture for students at the medical faculty at the university of Bergen was good too Glad at least some health care providers get decent information.

 

[V.R.T.]

Carmen Scheibenbogen (~14 minutes, intro in Norwegian, presentation in English).

A couple of questions from Scheibenbogens talk.

1. If this improvement from immunoadsorbtion is genuine, why would it not be an appropriate therapy for the severe or very severe in the absence of better drugs?

2. She says that she has seen very good improvement from CD19 depleting drugs in trials at Charite. Does anyone know what she is referring to?

I think many here will feel she overstates the evidence in her talk about mechinisms. Nevertheless it is good to see clinical trials happening.

 

[Utsikt]

The basic principle of BPS is nothing more than the foundational scientific principle of taking into account all relevant significant causal factors to explain a phenomenon. It is a truism that nobody could object to.

I don’t quite buy this. Biomedicine was already taking into account all factors, but it only viewed it through the lense of the physical reality.

BPS says that there exists something more, something not already covered by the physical reality. But there is nothing more.

 

[rvallee]

I'm not sure that biopsychosocial can be pinned down as any one thing. It's too vague and generic. In practice it's mostly useless or horrible. In principle it's hard to judge because it doesn't really say anything, which allows anyone to basically say anything about everything.

What matters more than anything is that what it is, in practice, has nothing to do with what is claimed in principle, and that it adds nothing of value.

It's not much difference from political parties with completely different philosophies and policies all claiming to be for justice and order. It means different things to different people, and that's what makes it useless, it's a shapeless void. It's the same as the questionnaires they use: every single answer to their questions can be answered the same way by different people but for completely different reasons, or differently but for the same reasons. It reduces complex matters down to simple numbers, like compressing information and losing 99% of it.

Having read/skimmed hundreds of biopsychosocial papers, presentations, assertions and the like over the last few years, I haven't seen anything at all in there that is worth a damn. And I am 100% certain that over time, nothing at all out of the current ideas will hold up. It's the health care equivalent of thoughts and prayers. In themselves they can be framed as well-intentioned and harmless, but the second they are elevated above a simple complementary set of good intentions, when they are operationalized with fake formality they can't live up to, they only cause harm for zero meaningful benefit.

 

[Jonathan Edwards]

But whatever we might think of BPS, the fact is many health professionals genuinely believe BPS is all about supporting the patient in all three ways and it’s a major part of their professional identity (even if some don’t always practice in as holistic a way as they think they do).

But if we ever to get anywhere and maintain any sense in medicine we need to stop muddling concepts. The BPS theory is a theory of causation. That has nothing to do with supporting patients three ways (there isn't much you can do socially). Whether an illness has a partly psychological cause or not need have nothing to do with whether psychological treatment or support is likely to be justified. Very often it is the people with 'physical' causes for their illness, like cancer, who need psychological support. People with psychiatric disease may be better off with drug therapy.

So I agree with Trish that in terms of therapy there is no 'BPS approach'.

 

[Sean]

Biomedicine was already taking into account all factors,

Not sure that is correct.

(Not a criticism of biomedicine, as such. More a comment on them never being given a solid run at doing so.)

 

[Snow Leopard]

But if we ever to get anywhere and maintain any sense in medicine we need to stop muddling concepts. The BPS theory is a theory of causation. That has nothing to do with supporting patients three ways (there isn't much you can do socially).

I suggest re-reading Engel. Bio-psycho-social was *explicitly* a practise based approach rather than a causative theory. Some may have tried to twist it towards the latter in the years since but the evidence has never been there.

 

[Ravn]

But if we ever to get anywhere and maintain any sense in medicine we need to stop muddling concepts. The BPS theory is a theory of causation. That has nothing to do with supporting patients three ways (there isn't much you can do socially). Whether an illness has a partly psychological cause or not need have nothing to do with whether psychological treatment or support is likely to be justified. Very often it is the people with 'physical' causes for their illness, like cancer, who need psychological support. People with psychiatric disease may be better off with drug therapy.

So I agree with Trish that in terms of therapy there is no 'BPS approach'.

I don’t disagree. The BPS model of causation is neither coherent nor helpful and the sooner we get rid of it the better. I just don’t think a short video like this is the place to take that fight. This video has a few minutes to convince doctors practicing right now to not do stupid things like send their ME patients off to GET and CBT but instead to support them with whatever practical, financial or symptom relief they may need and are able to access

I don’t know about the Norwegian context that this video is responding to but I suspect it’s similar to NZ. Here the situation is that BPS is effectively the official stance of the entire health system at all levels

I’ve discussed BPS with a handful of health professionals and none of them cared one hoot about what Grinker or Engel might have meant or whether it stacks up as a model. As far as they’re concerned today’s BPS is about looking at the whole person in their environment. What that means in practice is vague and seems to depend on whatever the individual health professional wants it to mean. Some do have an undercurrent of psychosomatic thinking, others are all about socioeconomic factors or about family support. But whatever it means to them, they’re quite passionate about it

Which is why I think it’s unrealistic to expect any positive change from attacking BPS head-on right now. In the short term we’re more likely to get helpful behaviour from health professionals if we encourage them in some of the more useful beliefs they already have, i.e. the ones around practical support for patients, and let them call it BPS if they want to

In the long term the hope is that either the term BPS simply goes out of fashion or that people will completely forget what it originally stood for and everyone applies and understands it to mean that patients should be supported in whatever way is best for the individual. That would be language change in action. Unfortunately the process of language change tends to be a messy and confusing affair with unpredictable outcomes. Currently I see at least two opposing tendencies. On the one hand the term BPS is being applied to a pragmatic approach - not a model proper - to addressing economic, cultural and other barriers to healthcare. On the other hand the wellness fad is pulling the term back to meaning something vaguely psychosomatic - also not a model. Anyone’s guess which trend will win out

I don’t know if there’s a way to speed up a change in fashion, linguistic or conceptual, but if there is it has to be at a higher level in the system than a video like the one sparking this discussion

There’s a valid case to be made for not mentioning the term BPS at all in videos like this. It’s usually best to not remind people of any unhelpful notions they may hold. However, that argument only holds if the other side doesn’t bring the topic up themselves. And in Norway the other side very much brings it up at every opportunity, I suspect that’s why it was included in the video

Irrespective of changing terminology, the BPS model itself will, I fear, keep popping up in new disguises for as long as there are humans inclined to magical thinking. The best we can hope for is relegating it to the fringe. For that we need some robust research breakthroughs