In which way could Psychiatry and Psychology help investigate ME/CFS (and what exactly is Neuropsychiatry?)–Discussion Thread

Can you please elaborate, what tests and treatments are you referring to?

This happened to me back in 2014 and I never recovered . When I complained, the ombudsman said it was reasonable to assume a psychological cause if nothing showed up from physical tests. They got away with causing me permanent harm.

 

In which way could Psychiatry and Psychology help investigate ME/CFS ?

My instinct with this kind of question is to break it down into imperative and pragmatic elements i.e the things one can't avoid and things that might be useful given some freedom of action.

For all the reasons we are well aware of, the easiest thing would be to simply say "psychs have had their chance and they blew it, there can't be any role in future research or management of ME/CFS". I think there are imperatives that render that position untenable.

Firstly neither research nor service delivery are in the hands of patients so at best patient advocacy is going to be about making pragmatic choices about how to engage with psychiatry and psychology.

Secondly, in developed countries one in four people will seek medical help for a psychological/psychiatric problem at some point in their lives and more than one in 20 will suffer a serious psychiatric illness, and as there's no reason to think these stats are any different in PwME, psychiatry needs to be informed about the needs of ME/CFS patients who have a co-morbid psychiatric illness - this is an under researched area which needs to be addressed urgently.

Thirdly, although it is comfortable for us to think of ME/CFS as an organic illness having no psychiatric component, if ME/CFS is a condition (or conditions) that involve impacts on the brain, it is poor science to say that ME/CFS can not involve, at least in some patients, psychiatric symptomology. That is not to say that the lazy assumptions of Sharpe, White and others have validity, rather it demands that proper standards for investigating the brain impacts of ME/CFS are set by psycho-neurology and allied specialisms. Although speculative, we should consider how we might respond were genetic studies such as DecodeME to indicate associations between ME/CFS and genes associated with psychiatric illnesses: The role of genetics and genomics in clinical psychiatry

Pragmatically, ME/CFS advocacy will probably benefit from engagement with psychiatry and psychology, and I can't see the patient organisations engaging in a boycott. The questions is how, where and with whom does that engagement take place. Psychiatry isn't a monolithic entity, there exist a whole range perspectives and patient advocacy shouldn't get stuck on one dead end with a small, if influential group of UK psychs.

For example, the US appears to have a very different approach to psychosomatics. James Coyne, not known for his toleration of the UK psychiatry perspective of ME/CFS has been insistent that the way psychosomatic has been used within the UK context is not representative of Psychosomatic medicine, and Coyne himself has written extensively about psychosomatic approaches e.g: Personality and Health in the 1980s: Psychosomatic Medicine Revisited ? Sci-Hub link: https://sci-hub.se/10.1111/j.1467-6494.1987.tb00442.x The NIH has an entire department dedicated to Behavioural and Social Science Research - which is what in the US context psycho-somatic is fundamentally concerned with: The Office of Behavioral and Social Sciences Research (OBSSR) , the professional mirror to that department is the Society for Behavioral Medicine and the American Psychosomatic Society - a copy of the APSJ = APS journal .

 

Yes, potentially (re the tests in relation to PEM). It would be 'A' I guess by how you've listed it. No to the rest BUT ie the one definite area of psychology we don't mean is clinical (so I wouldn't word it that way, because I come at it from a different angle and see clinical as a 'little specific bit') - which seems to be weirdly more allied with psychiatry and seems to operate very differently.

A BSc in Psychology requires certain areas to be covered to a set amount/standard in order for it to be 'BPS accredited'. Stats, research design, methodology and grounding of themes, debates, literature but also the key subjects (which clinical is just one module of over a 3yr degree) is needed. Many of these subjects focus on methodology as 'how' is a key part of the 'what' (e.g. in working out what tasks involve forward or backward processing, why people make certain choices in different situations, how to study perception or autism).

Psychology is a subject that has many schools within it (like medicine, or politics) not a job area in as far as people might come across 'psychologists' in various settings they are familiar with.
Clinical psychology is one school within that umbrella - ie one small part. You do the training after you've done a BSc but it is only in that area/tends to be 'on the job' too.
Educational psychologists for example do a BSc and then tend to work in a school then do a similar later training to specialise in that. But should be as much about adaptations and set-up being better to accommodate all and increase performance and not cause stress etc rather than 'treating the individual' (which is clinical in its ideas of 'the person needs to cope')
Cognitive psychology is a school (in the subject sense) so large it can be an actual school (in the physical sense) in itself. You will get people who go through the postgrads, PhDs, postdocs and so on and work in universities but also lots of other settings where it is relevant (hence noting the air traffic control example, where it is about how exhausting that task is and therefore timelimits before performance is affected by fatigue and how long breaks should be in order that people can 'perform' that task again at the right level as well as working conditions to make it less of a strain on eyes/reduce unnecessary complexity etc).
overlaps like 'consumer behaviour' (marketing and psychology using decision-making, cognitive models and neuro), and AI (artificial intelligence, computing)

It's not generally about 'treating someone' but understanding making the situation more appropriate. e.g. dyslexia but also air traffic control (I'd imagine eye-tracking could input into hours for lorry drivers), making workplaces less damaging or stressful, increasing performance by providing equipment and set-up that reduces unnecessary strain. Because they know what would harm or be problematic for 'normal', but also that in itself is a distribution, and they tend to label/understand the phenomena vs 'disease' or 'disorder'.

They also study fallacy and traps and group think issues, priming and other 'tricks' that make people think inaccurately/believe untrue things or make decisions based on bad information. It looks at memory like ability to remember a face or what happened under different conditions (fear, busyness, distractions), or memory in a more workplace/exam context and how the different types work and vary over different individuals. They look at intelligence, what it is and whether a test is actually testing what might be claimed it is.

There are a lot of other 'schools' and most will be under this latter format - ie not people you'll come across day-to-day calling themselves psychologists in the sense of 'clinical' but maybe neuroscientists (studying stroke, how it repairs after that, or developmental or injury and processing, recovery and different tasks). This is actually the bulk of psychology. And you have to think of it as a subject that looks at the situation as much as the individual - psychiatry is very interested in 'abnormal' but knows little about 'normal' and doesn't adapt the situation. Indeed it used to not cover strokes, alzheimers, autism as these were the psychology domain that built understanding on a lot of these

Psychology is actually understanding 'the brain' and how it works, but also how on earth you can find that out (they note 'which can't be done by autopsy' and even scans without knowing what complexities layer on what because of the nature of the beast). e.g. perception is sight, sound etc and discrimination of it etc and will involve the architecture of the eyes and so on but also how capable the system is of differentiating speed and whether contrast and distance changes that (think optical illusions in there too)

Due the the accredited degree set-up you can imagine that exempting clinical most of these specialisms need grounding in the basics so you aren't doing silly things like setting up an experiment with an inbuilt optical illusion at a certain time of day or not understanding exhaustion, priming or 'leading questions'/groupthink phenomena. You need to know 'normal brain' abilities and limits to identify issues, but issues to identify which aspects those parts of the brain play a hand in.

They work in labs (psychology labs not test tube ones - though some areas of those will have such equipment if it is relevant) with relevant equipment which might be eye-tracking set-ups or seemingly normal rooms with various cameras for tasks or things like sleep labs, think experiments relevant to the task in hand. They can also be occupational in the sense they'd go in and study a workplace and how it impacts the individuals.

Psychology is looking at how the brain works, and all the complexities of what controls what and is involved with what tasks - conditions often get covered because they help to further understanding of this e.g. injuries to certain parts = certain functions being changed. As they try and unpick how certain tasks and thinking layer on top of each other then studying different injuries or developmental differences provides comparators.

It's why stroop tests and eye tracking and other tests are a big feature because they are trying to unpick the various phenomena of how cognition works, and things like tiredness, priming, multiple information sources (contradicting each other or saying the same thing), factors that increase complexities of tasks. Hence the good at 'controlling for' things others don't know exist inbuilt into their methodology.

 

I can only think of one example: a friend had a canker sore in his mouth, so his Chinese mother sent him to a TCM doctor, who prescribed 'watermelon frost (fungus on watermelon leaves)', and that worked really well for him. My guess is that TCM tried all sorts of different treatments for this problem based on their nonsense foundation, and somewhere along the line, they stumbled upon something that actually worked reliably. They then may have had to do some creative twisting of their theoretical basis to come up with an explanation for why it worked, and then everyone could look at that and say that it was obvious, and proof that their medical reasoning works well.

As for other examples, I really don't know much about Chinese, Indian or other Asian medical practices. People do support them with money and trust, so there must be some diagnostic techniques and treatments that work reliably enough.

I do believe that Asian medical science has found some reliable treatments for some diseases. I don't believe that they developed them due to their foundation of four humours, yin and yang and chi or whatever else. I expect they developed them despite that foundation.

 

Yes, you need to think outside of 'NHS psychologists' which makes people think psychology is about clinical psychology - whereas it is a little part of the bigger subject (one module of a whole 3yr degree) which tends to focus on things like methodology and how you unpick which bits of the brain are involved with what and situational impacts and so on. Much of the scientific psychology is basically experiments, knowing how to studying things to control for other factors etc. so universities, labs, workplaces of different types.

Here is a link to the type of role in air traffic control to give a sense beyond the 'NHS type': https://thepsychologist.bps.org.uk/...ings-can-have-huge-impact-air-traffic-control

Hard to describe the different areas and how they work succinctly (vs what clinical psychology does) but, I've done separate sections so hopefully 'bit by bit' is possible.

I'd say cognitive psychology for:
I think 'understanding the limitations', measuring the impact of other factors (light, tiredness, noise, multi-tasking), getting to the bottom of what gets tired and when (think eye-tracking as an example and how they can compare to other phenomena e.g. normal people getting tired in different ways, distraction, age, other ailments, as 'curves' and how they could see what was perhaps eyes getting tired and what was brain).

So 'unpicking cognitive dysfunction' rather than the clinical idea of recognising it would be 'measure and understand'. A bit like the difference between a physio (describing a history) vs Workwell Foundation approach for the physical PEM.

Except we don't really even know what has been bunged under that concept of dysfunction across different people until it's looked into (ie for some it could be 'fog' thinking at all, others it could be migraine type thing, for others it can be thinking fine but anomia with words and someone only observing thinks that is 'fog' because it comes out the same, or plain fatigue after a short time). Good psychology research could unpick these different aspects and work out how to separate them so it is more specific.

e.g.: https://www.nottingham.ac.uk/psychology/research/cognition-and-language.aspx

neuropsychology:
could then take these tasks for the different issues and view the scans to see which areas/processes are implicated (and compare to norms and other injuries or illnesses).Study things like strokes, developmental, and in some sub-areas look at processing and issues and work-arounds with different problems like this

e.g. https://www.nottingham.ac.uk/psychology/research/computational-neuroscience.aspx

health psychology:
think the opposite of the BPS/'nudges' using behavioural science stuff - ie studying psychology related to health, but without the emphasis being about someone's health is because they think wrong but how could that situation change to reduce the issue.

There is a lot of situational (ie where the situation has impacts on people in different ways). Whilst ironic given what we know about ulcers now - a still good book to read is 'why zebras don't get ulcers' as it unpicks lots of situational and isn't too hard a read/more 'popular' format rather than textbook. PS one thing that made me smirk was a review of it saying 'there isn't much 'how to deal with this stress' section', because of course these days BPS messages are that rather than the situation being the poison it is how you perceive it etc. - think for example about testing for something serious and the stress involved there (and that bigger subject potentially including timings and manner of healthcare staff in when and how people get news ie what factors could come into play) vs the ideology that if someone is stressed --> send to CBT/therapy to treat them (and don't look at whether it is even necessary at all). What if every kid in a whole school is getting anxiety - what would be the genuinely sensible approach to start looking at?

If you scroll down to the 'Measurement' section (just before half way) of the following: https://thepsychologist.bps.org.uk/volume-24/edition-12/healthy-contribution then you begin to get a sense of the difference between this discipline and biopsychosocial approach (which is why I think more on this forum would be healthy for unpicking the flaws in their rhetoric and methods).

example quotes/tasters from this link, to give an idea:
"Behavioural and psychological measures are increasingly important as health outcomes. There is a growing emphasis on finding objective measures of behaviour, including routinely collected data, such as: the use of electronic monitoring to assess medication adherence; prescribing data to reflect the behaviour of clinicians: the use of exercise facilities to reflect exercising behaviours; and the use of accelerometers to assess activity levels."

"There has been a shift from the much criticised, cross-sectional study of the relationship between two self-report measures to more prospective studies with objective assessments and the development and evaluation of theory-based interventions. Prospective designs offer some progress in assessing causal questions as the hypothesised cause precedes the outcome, but clearly experimental designs are necessary to test causality, and these continue to be rare. Process evaluations are increasingly used to assess whether an intervention has changed the targeted theoretical construct with resulting effects on the outcome variable. "

 

I find it difficult to understand why cognitive testing is not specifically mentioned in the guidelines. Especially when ME is classified under brain disorders in ICD-10.

According to my GP surgery, a neurologist orders neuropsychological testing, if this information is correct then it's not hard to see why hardly anyone with ME will be offered cognitive evaluation based on what most, if not all, neurologists perceive ME to be.

It's difficult but not impossible to have recommendations and referrals for testing although I think you would need a doctor with a specialist interest in ME as a physical disease. Ideally, recommendations will be made by a neurologist or immunologist, which is not great because those are the two specialist areas that appear to no longer exist within ME on the NHS (NHS England).

https://www.nhsinform.scot/illnesse...omyelitis-me-and-chronic-fatigue-syndrome-cfs

The other way is via recommendation and referral through doctors that specialise or are familiar with conditions pwME might also be suffering from. That's how I've managed to have neuropsychological testing recommended on the NHS. Even so, during my appointment, it didn't appear having an ME/CFS diagnosis alone was enough to justify testing. The recommendation was made on the basis of possibly having COVID and other infections.

From what I understand, a clinical psychologist is a trained mental health professional that diagnoses and treats mental disorders, learning disabilities, and behavioural problems. People with primary mental health conditions can also suffer from cognitive issues but of a different cause. So I think a clinical psychologist interested in the BPS model of CFS will attribute difficulties to emotional distress/mood issues/behavioural problems.

A neuropsychologist is a specialised psychologist primarily concerned with cognitive functions — especially functions impeded by the presence of a disease, condition, or injury that affects the brain. They study the connection between the brain and behaviour. Neuropsychology is a sub-field or a speciality in the world of psychology, more focused on neurological brain disorders rather than the person’s mental and cognitive well-being as a whole. https://neurohealthah.com/blog/psychologist-vs-neuropsychologist/


If ME is a brain disorder then it would make sense to have neuropsychologist instead of psychologist involvement when treating pwME.

 

People might be interested in this information from within the health sector of NZ around the cognitive issues that doctors should be aware of when considering diagnosis or for general information.

neurological and cognitive symptoms

• Confusion
• Impaired concentration and short-term memory consolidation
• Disorientation
• Difficulty with information processing, categorising and word retrieval
• Perceptual and sensory disturbances – e.g. spatial instability and disorientation and inability to focus vision
• Ataxia, muscle weakness and fasciculations
• Overload phenomena:
  • Cognitive, sensory, e.g. photophobia, hypersensitivity to noise
  • Emotional overload – may lead to "crash" periods and anxiety

And the diagnostic triage for ME especially of moderate to severe depression (which can cause a range of severity of cognitive disorder very similar to ME on cognitive examination and often needs to be treated to improve the accuracy of a neuropsych assessment and to improve cognitive function). It is also advised to treat any sleep problems, if possible, as this too can worsen cognition.

• Request an appropriate sub-speciality assessment e.g., rheumatology, endocrinology, neurology, infectious disease.
• Note that CFS cannot be diagnosed in the presence of untreated moderate to severe depression
• If there is significant uncertainty about the diagnosis, consider requesting a general medicine assessment

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