How do we stop charities and influencers spreading bio-babble about ME/CFS?'

[Utsikt]

Maybe the point is that doctors wouldn't understand that by the term 'neuropsychiatric'. And we're talking about the gap between what patients and doctors understand things to mean, for which drivel perpetuated via the internet is in no small way responsible.

Those were lists from official hospital webpages for example. So it’s not just lay people muddling things

 

[Jonathan Edwards]

Those were lists from official hospital webpages for example.

Well, hospital webpages will be curated by lay people!
They are full of medically illiterate stuff.

 

[Kitty]

Those were lists from official hospital webpages for example. So it’s not just lay people muddling things

Sure, but it's not an argument for us joining in. Because of where we find ourselves—whatever the reasons are for that—we need to be mindful about sticking to old-fashioned evidence.

How do you imagine doctors get most of their information these days?

Obviously I'm not saying the internet is a bad thing per se, it was in response to a comment about finding stuff via Google. Which is as capable of serving up dross as diamonds, but it's sometimes easy to forget that.

 

[Utsikt]

Well, hospital webpages will be curated by lay people!
They are full of medically illiterate stuff.

The ones I looked at had notices at the bottom stating they were reviewed by doctor X.

Sure, but it's not an argument for us joining in. Because of where we find ourselves—whatever the reasons are for that—we need to be mindful about sticking to old-fashioned evidence.

I’m not arguing for us joining in on any inaccurate labels. I’m just trying to point out that if there is any possibility to choose between different labels, we might want to go for the ones that invoke less BPS vibes all around.

 

[Evergreen]

I was really struck by a doctor's comment in a recent BBC article about PANDAS.

First, here's what happened to the boy - he got strep, and these symptoms:

Charlie's mother, Kate Drury, noticed something strange about her son's behaviour. It started with an eye twitch and then he kept sniffing his hands. Later in the day, he developed a fever. Drury took him to an urgent care clinic near the family's home in Illinois, US, where he was diagnosed with Streptococcal pharyngitis, also known as strep throat.

In the weeks that followed, Charlie's health deteriorated in ways that baffled Drury. He became so sensitive to smells that Drury had to stop cooking in the house. He developed extreme separation anxiety, yet his own mother's touch caused him to scream and scrub vigorously at the spot where their skin had met. He barely slept, became anorexic and refused to bathe. He hurled objects around their home. He hallucinated. He struggled to read and write.

Now, I think pretty much everyone would be able to recognise those as psychiatric symptoms.

Here's what the doctor was quoted as saying:

Jennifer Frankovich, a paediatric rheumatologist who directs the Stanford Immune-Behavioral Health Program in the US and whose team has produced some of the research on Pandas-related brain inflammation, says such findings are important because they indicate "this is a real disorder" caused by an autoimmune response, rather than a psychological condition.

For parents struggling with a child whose behaviour has suddenly and dramatically changed, that revelation alone can be valuable, particularly as there can be a tendency to blame it on poor parenting, says Frankovich.

It's possible she was misquoted. Or maybe I'm misunderstanding something. [Edit: Indeed, I was! See Jonathan's post below.] But it sounds to me like the doctor is bending over backwards to assure the parents of this kid who has suddenly developed a psychiatric condition that he's not in that camp, with those people, with the unreal disorders. Instead of using this as an opportunity to educate the world about psychiatric conditions.

 

[Jonathan Edwards]

It's possible she was misquoted.

No, I think that is what she would have said and it makes sense. But that is because to medical professionals a psychiatric condition is quite different from a psychological condition. 'Psychological condition' essentially means psychosomatic or neurotic rather than a biological psychiatric problem.

This is completely opaque to the public at large, especially when a lot of psychiatric departments have changed their name to psychological medicine. But a 'psychological condition' to a medic is one that is appropriately managed by psychodynamic psychotherapy because it is a matter of unhelpful ideas that are not due to any underlying biological abnormality.

If Dr Frankovich had been asked if PANDAS was a neuropsychiatric disorder she would have said yes. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections,

 

[Evergreen]

No, I think that is what she would have said and it makes sense. But that is because to medical professionals a psychiatric condition is quite different from a psychological condition. 'Psychological condition' essentially means psychosomatic or neurotic rather than a biological psychiatric problem.

This is completely opaque to the public at large, especially when a lot of psychiatric departments have changed their name to psychological medicine. But a 'psychological condition' to a medic is one that is appropriately managed by psychodynamic psychotherapy because it is a matter of unhelpful ideas that are not due to any underlying biological abnormality.

If Dr Frankovich had been asked if PANDAS was a neuropsychiatric disorder she would have said yes. PANDAS stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections,

Thank you for explaining! I'll leave my post there so that people can benefit from my mistake.

I've always been clear on psychiatrist vs psychologist. The "psychological medicine" thing has always thrown me.

I thought psychological referred to the mind, thoughts, behaviour, things like that, while psychiatric referred to the underlying disease contributing to those things, and both psychiatrists and psychologists would be involved in the care of someone with, say, schizophrenia.

So I guess what I didn't understand was when "psychological" is paired with "condition". Wonder did the boy's parents?!

 

[Evergreen]

Actually I'm still confused. I might need @hibiscuswahine to recommend where I could read more.

 

[Kitty]

I thought psychological referred to the mind, thoughts, behaviour, things like that, while psychiatric referred to the underlying disease contributing to those things, and both psychiatrists and psychologists would be involved in the care of someone with, say, schizophrenia.

My understanding is that psychology is more about thinking. The patterns of it that can shape attitudes, drive behaviours, etc.

Psychiatric illness might produce disordered thinking and behaviour, but the cause is in the brain, not in conscious thought. Rational discussions about, say, the effect of reframing thoughts and experiences—the sort of things psychology might approach—would be impossible in someone with psychosis. By definition they can't be rational, they're experiencing things that aren't real as if they were. You can't help them reason it away.

 

[Jonathan Edwards]

So I guess what I didn't understand was when "psychological" is paired with "condition". Wonder did the boy's parents?!

Yes, keep your post up. This is an issue I have aired before and put into a book I half wrote that is sitting on my computer desktop festering. It is an important part of the confusion.

I came to realise just how problematic adjectives are when I did an MA in philosophy. I tried to work out why philosophers spent their whole time arguing about statements that clearly didn't relate to reality, like 'why should physical matter come with consciousness'. (I won't go in to the reasons why this question is absurd.)

The nub of the problem is that in natural human languages adjectives do not have the same meaning all the time. They change their meaning for every noun they go with. That change is largely determined by usage and fashion but also by pragmatic limits on what meanings the noun offers.

You might think that physicists were better at this because they are rigorous but they are even worse. The word 'coherent' in physics has a range of completely different meanings and which one applies is completely impossible to know unless you are familiar with the precise context. Even then, physicists get their own words wrong, which is why everyone thinks quantum mechanics is weird when in fact it isn't at all.

The bottom line here, I think, is that if patient advocates want to pronounce on medical things they need to be damn sure they know what the words mean - and most of the time they don't.

 

[Jonathan Edwards]

So the other bottom line is that you cannot work this out logically. It is just the way medics talk.

 

[Midnattsol]

So the other bottom line is that you cannot work this out logically. It is just the way medics talk.

Some medics. Medics get things muddled too, and use language in different ways, and as a patient you don't know what they mean unless you ask specifically (and they might not give an honest answer).

 

[hotblack]

Seeing the approach by BACME take in their recent guide I think reinforces what @Jonathan Edwards has been saying, I’m coming around more to the need to be a bit hardline in this

BACME have no evidence for their rehabilitation approach. Their justification is based upon nothing more than their experience and the idea that rehabilitation is a human right. They are happy to throw in some pseudoscience to confuse matters and say ‘of course it’s a biological disease’ as cover for what they have always been pushing.

It seems clear they want a fight based upon ‘rights’ and ‘experience’ so it becomes patient experience vs expert experience and they as experts win.

 

[Evergreen]

Some medics. Medics get things muddled too, and use language in different ways, and as a patient you don't know what they mean unless you ask specifically (and they might not give an honest answer).

A case in point being when PACE types tell pwME/CFS that they believe their symptoms are real, knowing that that will reassure the patient that the clinician doesn't think they have what the patient thinks of as a psychological condition, when the clinician actually thinks that all they have is some minor biological dysfunctions as a result of false beliefs, aka what the clinician thinks of as a psychological condition.

 

[bobbler]

Seeing the approach by BACME take in their recent guide I think reinforces what @Jonathan Edwards has been saying, I’m coming around more to the need to be a bit hardline in this

BACME have no evidence for their rehabilitation approach. Their justification is based upon nothing more than their experience and the idea that rehabilitation is a human right. They are happy to throw in some pseudoscience to confuse matters and say ‘of course it’s a biological disease’ as cover for what they have always been pushing.

It seems clear they want a fight based upon ‘rights’ and ‘experience’ so it becomes patient experience vs expert experience and they as experts win.

what they mean of course is ‘rehabilitation is their [Bacme’s] human right to still get funded to target others with, whether it works or harms’


oh except that is them just being dramatic because there is no right, nevermind it being a human right level entitlement even if some of them seem to feel that way for them to keep imposing something on others and getting paid for it, no matter what the consequences.

In fact I don't think they actually have the right to call any of these things therapies anymore (and ergo themselves therapists) in the area of/patient group of ME/CFS given that they are still not focusing on evidence or checking it 'produces good'.

And yes I think it probably is time that technical and correct aspect of that term is flagged. And required to be implemented

For example as comparisons:

Just because eg hyperbaric is a 'therapy' in a patient group that needs it doesn't make it a 'therapy' in a group who don't have any call for it, or might even have a condition where going into a hyperbaric chamber would be a bad idea - and I highly suspect for example that those who therefore do said therapy therefore are required to run a check/assessment before they start sitting someone into said chamber with a medical assessment sheet. Oh and check it isn't causing harm.

Chemotherapy is a therapy for those that it has been matched as a treatment for their specific condition. Giving the same infusion of (or tablet/other method of administration or dosage, under whatever name or blurb) chemicals to any old group simply wouldn't be allowed because it is likely to be harmful and there is no evidence of it being needed and as per 'informed consent' the potential benefits and risks making sense

You can't just go selling something as a therapy, nevermind calling it a human right for them to do so, just because you've got some sort of dodgy blurb. Particularly when those you impose it on reported harm and instead of caring because they had good intentions and were therapists they got rude and intimidating with those individuals, and I'll be honest as someone with a psychology background I think they have added in their own cod psych merely in an obvious attempt to undermine patient testimony and right to decline consent. There is no evidence those slurs (if there is no evidence) are there for any other reason.

And no your BS 'theory' doesn't count when it is the old theory with new tropes substituted for the old and uses just as a weak a methodology as the very methodology that was explicitly rated as low quality in the assessment of research for the same illness.

It just doesn't show care and attention and concern for safety that would warrant claiming either that label of 'therapy' for that patient group, nor claims of entitlement to offer something you don't seem to be showing due care that it is safe - which would of course involve you know follow-up rather than mere bald assertion?

 

[duncan]

Some medics. Medics get things muddled too, and use language in different ways, and as a patient you don't know what they mean unless you ask specifically (and they might not give an honest answer).

Generally speaking, it is my experience that although medics are well-educated, they are close-minded. They are governed by their own cultural biases just as everyone else is, but because of the arrogance that seems to be part of their ticket, and because of their direct and immediate impact on patients of all sorts, those biases are amplified.

So if you go to a GP with a pre-existing notion of what constitutes a contested disease, odds are they will regurgitate mainstream BS irrespective of how accurate those notions are.

The last thing we should be doing is handing them anything that re-enforces those misconceptions. If they think ME/CFS is a mental disorder, for instance, vs a disease of the brain, we don't want to feed that nonsense. And I don't think for a microsecond that most doctors reason through mind/body dualism trap.

 

[Jonathan Edwards]

It seems clear they want a fight based upon ‘rights’ and ‘experience’ so it becomes patient experience vs expert experience

Which latter they claim is purely based on the lived experience of their patients.
The same lived experience that is so emphasised by charities and advocacy groups.
Be careful what you wish for.

 

[Kitty]

patient experience vs expert experience and they as experts win.

And they can't see the irony: neither are much use in telling us whether or not a treatment works.

The patients' phrase used to mean something like "My experience is that exercise always makes my symptoms worse." Now it's more "I have lived experience of MCAS and doctors are denying it by telling me I don't have it."

That's a fair bit of drift.

 

[Sean]

We can counter with the much more fundamental human right for patients to have any therapy, rehabilitative or otherwise, to be firmly based in robust evidence of both efficacy and safety.

Besides, all non-palliative therapies are in some sense rehabilitative, in that they aim to improve function, one way or another.

 

[Sean]

I don't have the letter yet, although I have evidence that I received a copy. I think the email trail may be lost though. We may still find it.

If possible and safe for you to do so, then I think it is quite important to get this kind of stuff on the public record, partly to be able to confront those who wrote and signed it and demand an explanation, and partly to expose them to the rest of the world.

It might help enlighten and persuade more clinicians and researchers about how dirty the game is being played by the BPS club. Particularly now there is more robust biological evidence emerging from non-BPS studies, which threatens their long standing stranglehold on the field.

Censoring scientific inquiry like this should raise the hackles of all competent honest scientists. It is totally unacceptable.