BPS attempts at psychologizing Long Covid

For some of these things I can find that I use the terminology of the biopsychosocial school just to more easily allow some discussions to take place, but there is a downside to that and it probably does mean I sound as if I'm coming from a position that is not quite my own. Being able to challenge your opponents on their own terms is useful!

On being 'sure', I think you're right, but also the BPS approach tends to avoid making claims about being 'sure', and instead tries to present itself as a collaborative form of exploration between patients and therapists. This isn't always how it comes across to patients, and even if it were there are downsides to it that seem to get commonly overlooked.

Also, on being 'sure', and the lack of a mechanism that provides a consistent causal link, I think that the fact we don't know much about the cause of ill health in ME/CFS, and the way that many in medicine view themselves, means that the question is often 'is there a better way of me helping my patients?', rather than 'can I be sure?'

I think that we can point to lots of examples of acute stress leading to short term physical problems. I guess PTSD has symptoms that could be classed as 'physical'. There are problems with trying to divide things into 'physical' and 'psychological', especially when psychological diagnoses will often stem from problems seen as 'physical', our beliefs affect our behaviour, etc. Also, with a lot of conditions like ME/CFS, Long Covid, etc, there will be somewhat arbitrary cut-offs for when a patient fulfils the criteria for diagnosis, so almost any 'psychological' problem that makes peoples lives worse could increase the chances of people being classed as being ill enough to fulfil those criteria.

It feels difficult to be clear when talking about these sorts of things so I expect it's easy for little misunderstandings to occur.

 

When someone is afraid or in pain for any reason I thought that it increased output of adrenaline and/or cortisol - and adrenaline and cortisol both have effects on other hormones plus some organs. If that fear or pain lasts for a long time then perhaps the adrenaline/cortisol output might eventually stay permanently high as the body creates a new normal?

 

As Arnie says your GP misses that fear can be caused by processes going wrong in the body too.

The biggest problem though is that the doctor infers the presence of fear by the high heart rate. If the BPS were treating people who felt they had anxiety or depression in need of treatment that would be fine but if you claim not to have these psychological problems they say you are in denial and being in denial is proof you have a psychological problem.

That is arrogance and it has happened to most of us.

 

I don't think emotions are capable of causing many of the symptoms I have.

The sensations associated with emotions are just different and not even similar. Even depression doesn't feel anything like ME/CFS exhaustion. Depression is not doing things because there is no enjoyment in them so activities become pointless. There is no meaningful fatigue in depression and there is constant negative emotion. At least from my experience.

My experience of ME/CFS is nothing like this. Emotionally there is less negative emotion and emotions change according to circumstances (which are often bad, and considering that I think most patients are surprisingly stable). Activities feel rewarding unless they're too painful to do.

There is often the feeling of exhaustion that severely limits what I can do. Lot of fluctuations in symptoms: I often want to do things but symptoms appear so quickly or there are such harsh relapses that I can't do them without feeling like I'm harming myself. My brain wants to do things, it just often has to quickly reconsider when it realizes the impossibility of it.

As for anxiety causing fatigue, I'm not sure how that can make any sense. Anxiety is very activating. It could lead to being fatigued by the sheer exertion of having a lot of anxiety for prolonged time but then the anxiety would be very obvious and patients would bring it up as first symptom.

My ME/CFS also has a "dysregulated" and "frail" character to it in that it behaves erratically and is put out of balance so easily.

 

When I first developed a fast heart rate (100 - 160 beats per minute) it eventually turned out to be caused by very low iron. Improving my iron levels reduced my heart rate, although it has never reliably returned to what it was before the tachycardia first started.

 

The body has homeostatic mechanisms to reduce adrenaline and cortisol to normal. In people with biological vulnerabilities, if the stressor is extreme or prolonged, damage starts to occur in these pathways and recognisable psychiatric disorders become apparent like acute stress disorder, major depression, PTSD.

 

Oh the irony. Maybe this chap should practise mindfulness to improve his ability to pay attention to the evidence, or lack of it.

 

Shouldn't treating low or high adrenaline and cortisol be part of treatment for psychiatric disorders? I discovered that my long-term anxiety and most of my depression disappeared when I fixed my low levels of iron. I didn't need anti-depressants or therapy to get rid of it.

 

Yes I agree, my response to any claim for biopsychosocial factors causing longcovid is - prove it! Nullius in verba.

The standard of proof remains the same for longcovid as for ME, as for drugs treatments for COVID-19, empirical data is required proving or disproving an hypothesis.

We should expect no less empiricism regarding social phenomena, which as a student of animal behaviour I know can be measured and we cannot waive the need for empirical data because its a muddled idea intended to bamboozle in the first place, which would be compounding the error.

I would also comment that IMHO the idea that the pandemic is somehow a different kind of medical phenomenon risks pandering to class errors, i.e. just because lockdown can change social behaviour does not mean that biopsychosocial explanations are more likely to explain post-viral syndromes. We have to find out what is really happening.

There are dozens of psychology "academics" out there trying to get funding to research the idea that changes to social behaviour cause problems. This looks to me like the kind of research which is likely to be biased towards self fulfilling prophesies like the PACE trial, due to the conflict of interests created for BPS researchers by their need to prove their research deserves funding, which contrasts markedly with the ideal conditions for a dispassionate pursuit of pure science.

With regard to the BPS cult, the promise of compassion is the hook which seeks to persuade medical people of its validity. On which basis I would comment that it strikes me as deeply ironic that those who justify BPS as a source of compassion have nevertheless been willing to treat ME patients with great cruelty, disregarding the patients' valid concerns, which is an hypocrisy and double standard if ever there was one.

My feeling is that while there may be some well intentioned medical people out there who have been willing to consider BPS because of the hope it offers an argument for a better quality of life for everyone, by making our leaders think about human happiness and health needs for a stress free existence, which are undoubted, the quest for compassion via BPS theory has been hijacked and exploited by those who use it to justify reducing financial liabilities for patients with real medical needs meaning BPS theory and therapy are tainted by mixed motives.

Consequently the superficial good intentions of BPS theory historically paved the road to a hell of ignorance and misconceptions for post-viral patients, offering them advice which was the opposite of the advice many need. This situation has at last been recognised by our medical establishment as the recent changes in NICE advice reflect, which I hope will be food for thought for the neutral spectators on the debate.

I would add that you cannot serve humanity by incorrectly labelling a large patient group with mixed needs using pejorative and condescending stereotypes to facilitate dismissing their claims for assistance, which is what BPS was really trying to do.

 

No, only if they are clearly deficient of raised, as tinkering with the HPA can cause problems with the ability of the body’s homeostatic systems to fight infection and undergo surgery. Low levels of iron make people tired and depressed. All clients that I saw for depression had to have a variety of blood tests to rule out medical disorders that cause depression.

 

More incoherent ramblings from people who are themselves the problem, arguing the problem as a solution to itself. Medicine has refused to apply science to this problem despite having decades to do so, and so the solution can only be more of the same pseudoscience that is reaching a crisis point. Specifically in this case, the same junk Sharpe has been peddling: "liaison psychiatry", whatever that is.

Oddly enough, this article recognizes the crisis point of medicine, seemingly unaware that medicine only ever progresses through technology and science, neither of which psychiatry has ever contributed to. Psychiatry is largely at fault for this crisis. And so the solution must be more psychiatry, ideally with ever lower standards, because psychiatry can't meet any. And of course completely oblivious that they are making the same point the patients have been making, just backwards. Good grief. Most rocks are more self-aware than this.

This is exactly like fossil fuel executives arguing for clean coal as the solution to climate change. It's absurd that medical professionals find themselves making the very same arguments for the very same reasons, even more so after this very failure has just faced its most spectacular failure point in Long Covid.


Long COVID: my work with sufferers reveals that western medicine has reached a crisis point
https://theconversation.com/long-co...rn-medicine-has-reached-a-crisis-point-167417

Nothing worth quoting, just the same generic fluff that only means one thing: take us seriously, not our patients, us, give us work and money and awards and importance.

 

A Scottish Government (Health Improvement) hosted webinar for GPs on long COVID has been posted to YouTube; a copy of the slides is available here. One of the slides from this webinar was screenshotted & critiqued by one of the doctors with Long COVID who attended it last month.

The intense desire to attribute everything that is poorly understood to deconditioning and anxiety still manages to surprise me. The doctor from RCGP Scotland's "Common Stories in Clinic" (~00:31) is a good example of this; he warns that post-COVID patients' Fitbits are making them anxious and promotes a deconditioning / anxiety / avoidance-based understanding. Carson also presents on the neuropsychiatry of long COVID, focussing on functional cognitive disorder (starts around 00:40), but also mentions the "large chunk of people with chronic fatigue syndromes and functional neurological disorders".

This is, sadly, what GPs are being taught; there is a complete lack of awareness of ME/CFS or PEM, and the emphasis on "rehab" - largely unevidenced, as we know all too well - is very strong throughout.

 

Meh. Just skimmed and found those gems in the same list:

They are simply not listening, at all. Or paying attention. Not even a bit.

And yeah there's Alan Carson, where I stopped, so they are just so completely out of their depth it would actually funny if it weren't for the consequences, and how much it says that we are soooooo very far from being out of it.

 

Could anyone illuminate why Al Carson is treated as some luminary in the post-infectious disease space? What are his qualifications to opine on these matters? And perhaps more importantly, why is anyone listening?

 

They are right in there with their functional cognitive disorder, 4 slides…with criteria, a few sentences showing each with an examplar and a table. No additional cognitive testing.

“Up to 20-25% of patients report persistent cognitive problems 3 months after COVID 19. We don’t know why but functional cognitive disorder seems common cause with vascular disease and neurodegeneration distant seconds; encephalitis rates are negligible”

At bottom of each page the bio-psycho-social approach like a ticker tape. OT involvement the only useful inclusion.

CFS and functional cognitive disorder have their own railroad system to recovery. Below every-one else’s. It appears dashed and uncertain but they hopefully think they will recover. Choo Choo.

 

He says things his medical peers want to hear. Same as Sharpe and Wessely or Stone. Nothing special, certainly not a luminary. These people are in the marketing business and there's plenty of demand for it, they don't even have to make any effort at it and there's basically infinite money considering how cheap this is and the massive profits they make by throwing us in the dumpster.

 

The most amazing thing here is that the public health messaging from the start, and still is, has been that Covid is mostly harmless to those below 60, in part because of this belief system. So much emphasis on mild illness, in addition to asymptomatic cases being rather common. As a result, the vast majority of people have either not heard or heard so little about LC they wouldn't think twice about it. In fact many long-haulers said just that, that they had no idea.

So in essence public health messaging has created the very condition that should lead to this so-called nocebo effect not to come into play at all. Again, this is easy to verify. And yet, it's as if it never happened. Even as it's still happening. It's amazing seeing the twists and turns people do to justify their beliefs when they conflict with reality. Orwell was completely wrong, there is no need to fix historical records, it doesn't even matter. I hope general lessons are learned out of this. Because otherwise... I frankly doubt our species survives very long.

And of course this thread channels some of the prominent political voices in the pandemic denial crowd who minimize everything, like Alex Berenson. LC denial is as intensely political as pandemic deniers and minimizers.

https://twitter.com/user/status/1464860284527464454

 

That was one of the most incompetent and depressing twitter threads I have seen recently. The author seems hopelessly lost to this reality-denial and unfortunately they seem to have a voice.

That's the point - long COVID is the illness and the damage the body is sustaining is severe. Why is this so hard?

Quelle horreur! Encore une fois, c'est le magnifique article français.

The particular trait of this virus to cause infection without detectable seroconversion at follow-up in so many people is symbiotic with the denial/psychologising mind-set.

Ah yes, that'll explain the many healthy, highly functional, financially secure, well-balanced, nutritionally-optimised sportspeople coming down with long COVID then. Better add in some internalised misogyny to cover all bases.

Time for my least favourite emoji again.

 

Her profile links to https://www.pandata.org, which has the heading "The Ugly Truth About The Covid-19 Lockdowns".

I suspect that part of her motivation may be in minimizing the potential harms from COVID in order to promote her viewpoint.

(I am in fact very sympathetic towards wanting to discuss the potential harms of perpetual lockdowns, so it pains me that they are constantly minimizing the risk of long COVID.)