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

Cognitive symptoms are usually categorized as psychological or psychiatric or if the cause is clearly neurological, as neuropsychiatric.

For example, it's rarely disputed that most forms of dementia are neurological diseases. Yet the symptoms of dementia are classified as (neuro-)psychiatric I think.

Investigating cognitive issues in ME/CFS (e.g. brain fog) also seems to fall into the discipline of Psychiatry, Neuropsychiatry or Cognitive Psychology.

What can we expect from these medical / psychological disciplines in terms of research and in terms of clinical examination (e.g. neuropsychological assessment)?

Looking forward to reading your thoughts on that topic.

(Please note that this thread is not meant to be a place for discussing psychosomatic approaches.)

 

Probably nothing without massive reforms. Even most of the DSM constructs don't have much validity, are too superficial.

The technology just isn't there yet, psychiatry is basically at the stage genetics was before the discovery of DNA, along with the technology to do something with it. It basically has to mature up before it can contribute.

Then I think it could do a lot but there's a lot of baggage to clean up before then. Until then I would be shocked if anything useful came out of there. Gotta learn to walk before they can run at a professional level.

 

Once someone develops a proper neurological basis for how neurological function affects thoughts and emotions, it would probably be better to start a completely new branch of science. Psychiatrists need not apply, except as freshmen. Way too much baggage.

What comes to mind is the eastern medical science: it started with a nonsense foundation (four humours, magical energies), and through observation and trial-and-error, arrived at some diagnostic tools and treatments that work for some diseases. This scientific foundation is still a bad one to base studies of new diseases on. Psychiatry would suffer the same fate. Better to scrap it and start fresh.

 

No doubt I will have a different perspective from many as I am a retired psychiatrist and despite many who wish to abolish that speciality in the ME/CFS sphere that is unlikely to happen in my lifetime and currently within our less than ideal medical system, once Neurology has excluded neurological disorders, Psychiatry are the one’s who have to weigh and investigate all the different determinants for cognitive disorders. This includes neurological and any other biological determinants and psychiatric disorders. Often we don’t know, or lack resources like imaging, advanced tests but have to give our best or several different diagnoses based on our clinical judgement and knowledge and often have to just say we don’t know but what can we do to support and use what we know to help (and yes that has gone seriously wrong and we get diagnoses wrong)

All psychiatrists are medical doctors with training in cognitive examination, brain structure, function and development, neurodegenerative disease, neuroscience and all psychologists are trained in neuropsychological assessment including cognition. We work closely together during the assessment stage and can take months to come to any conclusion after history taking, talking to informants about family and childhood history etc. Many do additional training in cognitive disorders and especially neurodegenerative diseases like dementia. Different countries have different names for this.

A neuroscientist is not a medical doctor but their research provides us with advances in neuroscience that we have to learn and consider when making a diagnosis.

Then it all becomes a labelling issue, what is a neurological symptom, a neuropsychological symptom or a neuropsychiatric symptom. It becomes a bit meaningless to me personally as it is all arising from the brain and all of it’s component parts and activity and probably seems like we are still stumbling around in the dark (because we can’t take it out, cut it up and do lots of tests and find out what is going wrong like other specialties).

However what I consider as neuropsychiatric are the more severe disturbances in brain function especially one’s that require rapid assessment and treatment eg psychosis, highly agitated states, disturbances in motor function eg catatonia, chorea because that can cause serious risk to themselves and others and death. They could be psychiatric (including substance induced), medical or neurological disorders eg. Encephalitis, Stroke, Hyperthyroidism, Hypoglycaemia etc etc. And also a psychologist would not be able to diagnose as have not had medical training.

 

Thanks all for your interesting replies.

So cognitive dysfunction in ME/CFS won't be classified as 'neuropsychiatric' but could be classified as 'neuropsychological'?

I think that's what interests me most: Could monitoring cognitive dysfunction (both cognitive fatigability and brain-fog in PEM) give clues about the pathophysiology of ME?

If yes, which cognitive testing and additional investigation (eg. fMRI?) would be necessary?

Would it make sense to combine testing with an activity tracker, a well-designed symtoms-and-activity diary etc?

 

Some people with ME, who can hardly eat or walk or speak have been locked up in psychiatric wards for months or years and bullied relentlessly, been denied help of any kind, been denied pain relief, some patients have had food left out of reach, been told they must get up and walk if they want to eat or go to the toilet or have a bath/shower, can't have mobility aids etc, etc. I find the description of what psychiatrists train for bears little resemblance to what they actually do (or tacitly approve of) in the real world.

 

I wonder if neuropsychology/ cognitive psychology could also help developing a diagnostic tool for PEM, similar to the idea of the CPET 2days test, but with cognitive exertion and testing?

A test that could be used both for diagnosis and as an objective measure, e.g. could validate and/or improve the DePaul PEM Questionnaire?

 

Just realized that I worded some similar/ related thoughts last year for the UK Priority Setting Partnership for ME:

I think I would word this a bit differently now, but still no idea if it makes sense, so any comments on that would be highly appreciated too.

 

I know that in any profession there are good professionals, conscientious, honest and endowed with common sense. Unfortunately, over the course of ME's history, pwme have suffered so much from the pernicious BPS and psychosomatic views of psychiatry and psychology, that my spontaneous answer to this question is: currently, in no way. Too many of their members adhere to these theories, with no proven causation, that I simply cannot trust them, with certain exceptions. It's a bit like the case of a car with a wrong steering, always tending to go to the right, for example, when you take your hands off the steering wheel. It seems that many of these professionals still have a strong tendency towards psychosomatic explanations of illnesses that are little or poorly understood. In fact, in my view, rigorous biomedical research and advocacy remains to me most important.

NB: Perhaps among these rare “ exceptions ”, there are some capable of carrying out rigorous biomedical research in neuropsychiatry, who knows ? And maybe 10 years from now, the technology to more accurate study (and eliminating any doubt !) the complexity of the brain will have emerged ? Lots of "maybe" however...

 

I guess psychiatrists helped me by being the only four doctors who actually thought I was ill in my early years of ME. They couldn't treat me but they believed and supported me, and the last one helped me change from my utterly crap GP to a good one, and I'll always be grateful for that.

Is it useful at the moment to label brain fog as anything but a side-effect, the way it is in pregnancy, some migraine auras, other chronic illnesses, sleep deprivation, etc? Lots of things make people's skin sore, but it usually gets better if you remove the cause—sure, occasionally the pattern of soreness provides important disease clues, but often it doesn't.

Anyway, back to the question: Psychiatrists and psychologists could listen, validate, support people to shape and express their thoughts. They could spot the pattern of symptoms and refer on patients who've been misdiagnosed. They could offer medication and/or counselling if needed. I don't see why they should be involved in investigating ME, though, or treating it. They've already got waiting lists a mile long of people they are in a position to help.

 

@Trish , @Arnie Pye
I will answer your questions first and then spend more time and research on current methods before considering and replying to MSEsperanza (as I can only deal with one thing at a time with my cognitive dysfunction and I think better to acknowledge this first as it is a highly emotive topic for both you and me (and everyone else!)

So I will try and answer your questions from my POV having developed ME as I was starting my training in psychiatry (which took about 3 times the normal duration) due to all the ME relapses (crashes) and the time to recover enough to work again, problems passing the exams due to cognitive dysfunction and PEM, managing the illness while juggling what is often a very high stress job in an under-resourced mental health service that requires good physical and mental health.

I intended to do specialist training to become a psychogeriatrician, my supervisor in this area recommended I do it and wished to support me (so specialising in cognitive disorder and neurodegenerative disease) but as my illness worsened and knew I couldn’t go through the extra study required on top of regular clinical practice, I reluctantly had to put this plan aside and as a senior psychiatric registrar, chose to remain in generalist (community) psychiatry but do advanced training in personality disorder, particularly borderline personality disorder due to the high levels of trauma and their stigmatisation within psychiatry/society, got my Fellowship to my college and then worked in Community Mental Health.

Because of this and my limited capacity to work due to ME and continued relapses, many of my patients were people presenting with complex presentations that other psychiatrists didn’t have the time to properly assess due to caseload demands (but also often didn’t have the degree of severity w.r.t severe mental disorder/risk as I wasn’t able to provide continuity of care). So people with medical disorders and primary psychiatric disorders (usually Major Depressive Disorder, Bipolar Disorder, Anxiety Disorders and some with a secondary Major Depressive Episode due to the impact of their illness on their life (but to a degree that it could not be managed in primary care eg self/harm, suicidality) I only got to the junior consultant psychiatrist stage (so 7 years very part-time) before my ME got to a stage I had to medically retire 10 years ago so I can’t speak for what is going on now in NZ psychiatry as I have severed ties to the college and my colleagues and created a different life.

I was asked to work in the Pain Clinic because of my skills but declined due to it being a part of Liaison Psychiatry (but also didn’t have the capacity and would require extra study).

In addition I live in a very small country (5 million) that lacks psychiatrists and is dwarfed by it’s neighbour, where the college is based, in terms of number of psychiatrists and research money so a high proportion of our psychiatric research is looking at mental health determinants arising from health disparities in the population especially focussed on ethnicity (Maori and Pasifika). We also have a different culture to the UK, other commonwealth countries and the USA so we may conceptualise things differently due to this.

We have little power to change your Royal College of Psychiatry and my college (RANZCP) has not shown any movement itself that I know of, nothing published, not spoken about except a few challenges to BPS in the letters to our main journal and some research at the time of Q fever outbreak in Dubbo. I saw that 2 Australian psychiatrists with ME were going to present at a conference in 2007 but when I arrived early to the room it was packed and couldn’t even sit on the floor to rest and listen (so definite interest!) but could not talk to these women and sadly that was my last opportunity to network with them and never heard of ME again at a conference level.

Yes, I share all your anger and frustration and totally agree Psychiatry as a profession has a lot to answer for and do deserve to publicly acknowledge the harm they have done and apologise, (yes, cold comfort for everyone and won’t bring back the lives lost to the illness from all the neglect and suffering to our lives and our families/carers). Ideally this should come from the discipline of Liaison Psychiatry but since all sectors of Psychiatry are complicit with it because they have did not collectively stand up and denounce the psychosomatic model for ME/CFS. So maybe World Psychiatry could do this one day. I think their thinking is outdated, they are like dinosaurs to the way I view and think about things. So there will be a wide range of what psychiatrists think and do in terms of their training, culture and what personal biases they hold, loads of unprofessional behaviour continues.

Why did psychiatry think they were appropriate to take control of this sphere - no one else stepped up. I think it is a specialty of medicine. Unfortunately many physicians are uncomfortable with clients having any emotional or mood response outside what they consider normal. Many find it difficult to interpret different emotions and behaviour and stigmatise people who have anything they consider a mental health disorder - so a referral to liaison psychiatry (and in the medical/surgical hospital setting we are stigmatised by them). So really reflects society who still have a deep distrust for people with mental disorder and psychiatrists. And the history of psychiatric treatment is not good and still needs improvement but with all disciplines of medicine this takes time for things to change.

To be totally frank and honest, I have yet to see Liaison Psychiatry get to a stage when they actually own the problem but there are many Liaison psychiatrists that who have updated their knowledge into newer models of care including the biomedical model of ME/CFS and many community mental health psychiatrists too as we see it is a chronic medical disorder.

I started training with all the psychosomatic models being used, the stress model had started to predominate and when I had one client with ME/CFS referred to liaison outpatients, my supervisor was not interested in their functioning and distress of having the illness and only wanted to know about the psychodynamic model - personality, stress, did they have a mood/anxiety disorder etc and when I said they didn’t have a primary disorder was told to discharge back to GP with no guidance or direction (and yes they were incredibly judgemental, one of the reason I rarely discussed my illness with colleagues).

So basically BPS, I don’t know if any got formal GET (we have no ME/CFS clinics here) but likely a strong encouragement to exercise and gaslighting based on the previous NICE guideline. They certainly didn’t get treated as having a disability and still are not recognised as one by our government and although pwME can get social welfare benefits based on a health condition and a disability allowance, it can be harder to get full disability benefit.

I don’t know if anyone got CBT like described in UK but probably some form of it, as per the treatment of somatoform disorders (akin to health anxiety - don’t focus on symptoms etc). From my experience most ME/CFS is managed in primary care and only referred to community MH as described above. The pwME I saw in my clinical practice had developed mental disorders that were comorbid or primary psychiatric disorders and we’re treated with the appropriate psychological therapy and help with improving social networks and support.

What did I think of any psychiatrist who held BPS views, disgust, but you have to find the right way to tell them as you do have to work with them, very difficult if they are your superiors and you have no position of power.

 

@hibiscuswahine , I'm sorry if it came across that I was having a go at you personally. I wasn't - I was having a go at not just psychiatry but the medical profession as a whole.

Being female, and having been tarred with "the mental health brush" in my teens (I'm now in my 60s) I have found getting medical treatment for anything invisible virtually impossible, and dealing with doctors and associated staff has been extremely difficult all my life. Many doctors have done marvellous impressions of brick walls as I try to talk to them. They sit their mute, roll their eyes at me, never offering any suggestions or tests or treatment as I explain why I'm there. Another type of doctor will go the other way and shout at me and then dismiss me. I've been kicked out of one doctor's office with him screaming after me as I left that there was nothing wrong with me, when it was discovered by an IVF clinic just a few months later that I had 6 large ovarian cysts. I can summarise my medical treatment throughout life as being a constant string of insults about my honesty, my sanity, and my morality.

The thing is that these attacks on me can come out of left field in circumstances I couldn't possibly have predicted. One of the more recent attacks on me due to supposed mental illness came from an ENT consultant. I suffer from intermittent eustachian tube dysfunction over the last 12 years or so. I am sure it must be connected with the total loss of hearing in my right ear (which happened over the same period of time), and my continuing loss of hearing in my left ear. The eustachian tubes can't be seen through the ears, they are behind the ear drums. This man implied that he could see my eustachian tubes and that there was nothing wrong with them. And then he cupped his own ears with his hands and said to me "Your brain knows you're a bit deaf and so it assumes your ears are blocked."

This kind of pseudo-psychiatry has been inflicted on me for decades. Doctors use mental health as an excuse and as a way of getting their patients out the door with no treatment, and they are, as far as I can tell, trained to do this to save money.

 

Thanks for sharing and explaining, , I know how stigmatising it can be at any age to have a mental health problem, after having a neuropsychiatric episode in my 30’s (now in my mid 50’s) but also all my clients in MH had experienced significant stigma too, which is why we are taught not to. In MH (In NZ anyway) we try very hard to have person-centred practice which is quite a different approach to BPS. We provide a lot of information on the disorder, treatment and informed consent etc.

Unfortunately our medical colleagues seem to have silly short-cuts in explaining pathology, I think many have communication problems and are too lazy and complacent to give a reasonable simple explanation and be open to clarification/challenge when questioned. Often that is a personal quality- they think they are being funny and approachable but should keep things on a professional level.

I do no think they necessarily get this from psychiatry as that is a explanation based on the neurology of auditory pathways but I do understand he may have looked at your notes and made some major stigmatising inferences on many levels - mental health, woman, age, ethnicity etc. what ever his biases are. It’s a major problem in the health system and society overall and why psychiatric notes are separate from medical ones and cannot be accessed by medical/surgery doctors and staff without a person’s consent.

 

Thanks, yes totally right, psych need to clearly state their limitations, lack of evidence in ME and when they are offering treatments that are based on their usage in mental health disorders and then extrapolated into ME treatment for symptomatic relief.

Psychiatrists and GP’s are doing it everywhere. There are some major dodgy medication practices going on, often arising from ME research and clinicians in USA for example. No proper RCT’s have occurred and although not fail safe they provide some scientific evidence on effect and harms outside anecdotal report. This is an informed consent/ethical issue for PwME as well and I see this often within Australasian Psychiatry private practice and in primary care.

The “expert” opinion is also a major problem in many different medicolegal, disability assessment and insurance settings. One-off assessments especially but also systemically throughout the profession.

 

Just wanted to note, as I did in this thread, that standard psychometric testing can demonstrate cognitive impairment in PWME (or, at least it did in me--and I was still well enough to drive back then). Though having simple measurements for cognitive dysfunction akin to an old fashioned pedometer or actigraph would be very helpful.

I'm not necessarily bothered by the term "neuropsychiatric" to describe our cognitive dysfunction. And do think that psychiatry will be a necessary adjunct discipline in managing the cognitive impairments in ME/CFS when they are better understood.

I AM bothered by using that as a springboard for speculating on my emotional state in ways that cannot be proved or disproved (the pseudo-objectiveness of many screening questions being complete nonsense). If a provider insists that I have appendicitis when I have no abdominal pain, I'm understandably going to question that diagnosis. Likewise, if a provider insists that I have depression or conversion disorder when I'm not experiencing emotional distress, I will also question that diagnosis. At least with appendicitis one can palpate the belly, do a CT scan, or even slice me open and remove my appendix to prove or disprove the diagnosis.

 

It's almost exactly the type of thinking/areas that we want to be considering. Psychology is a science once you take out clinical and social. Things like eye movement tracking (when driving) would be cognitive with some perception and potentially neuropsychology or one of the more specific under that (yes there are ones for neurodevelopmental, neuro something else which related to strokes and one which related to processing and disorders related to that). Memory is cognitive too.

Anyway they are all pretty scientific and focused on clever methodology - think with cognitive you had the stroop test (present words but they are in different colours and you have to say which colour the word is) and other things to work out how things work. Advise on safe working spans without breaks for air traffic controllers for example to avoid decline in performance. Combine this with the areas that study where the flaws are in different movement patterns or complex tasks and that know how to utilise scans well..

Important bit is the good ones should know to control for things, and what is relevant to control for (light, complexity of tasks, what 'load' is involved with things etc) - so the PEM bit if well understood should be on solid ground compared to other areas.

They are a bit less 'treatment' focused (than clinical psych is) but then understanding is a pretty big step towards that with these things, rather than reaching for sticking plasters, labels, and moving on.

 

So to clarify and taking into account other’s comments/requests and also break this up into various priorities/settings that you might like and others.

The specialty with the most training and experience quantifying and doing research into cognition is Psychology (this covers a vast field of disciplines within it and specialisation).

I have a reasonable knowledge of what they all do but things differ depending on their country of training and what they are called and any psychologist in the forum can clarify more.

Once a person has done a Bachelor of Psychology, they then do additional training. (Part of their training is statistics and the requirements and application for doing scientific experimentation (something a psychiatrist has to learn to their level, in their training rather than during a medical degree where it is quite general)

A clinical psychologist has done additional study and training to the requirements of being registered and admitted to their professional Board (usually masters level) and must meet high standards of competence and ethics so they can safely work with people, their job is to

1) assess people - history taking and neuropsychological assessment and application of other questionnaires/screening tools etc pertinent to the field they are working in eg educational psychologists assessing children’s problems at school, mental health assessments, cognitive assessment for neurodegenerative diseases

2) treat people by using a variety of psychological therapies based on particular psychological theories and their scientific research into them

A psychologist who has done additional training in cognitive science, is a cognitive psychologist and is purely research based within an academic environment like a university. Then you can have clinical psychologists with additional training in cognition and specialising in neurodegenerative disorders

So it depends on the setting on what you would like to achieve:

A) “pure” research into cognition of ME (so within an academic setting) and liaising with neuroscientists (exploring brain function)
B) clinical research with pwME but assessment only (no application based on findings and no psychological therapy applied)
C) clinical research as well as any therapy based on trying to improving cognitive function (and ?cognitive decline) in a pwME by using cognitive rehabilitation that is used in other neurological disorders but has yet to be legitimised with scientific research specific to ME.
D) use pre-exisiting medical/psychiatric system utilising the skills of psychiatry in clarifying issues around medical and psychiatric disorders so can get a more real world data of different and diverse groups of pwME

Yes, there is a lot of studies coming out on the cognition, the neuropsychology and brain function of pwME but also some of this information has been available for many years.

I had a neuropsychological assessment in 2004 by the Professor of Psychology at my local university and they had the scientific research and literature available to confirm that my cognitive dysfunction was due to ME. I had a classic pattern of working memory deficits, attention and concentration problems due to ME cognitive fatigue based on my history giving and their observation on what occurred during the assessment like performance dropped off etc etc. It was at the time of sitting and trying to pass the written exams for Fellowship and they gave recommendations on rest periods and and other cognitive-behavioural (no, not BPS!) techniques to apply. It helped. Neuropsych exams also test intelligence, visual spatial and all sorts of things that were very interesting to know and what my cognitive strengths and weaknesses were.

The finding of reduced limbic perfusion in pwME related to the severity of their illness and compared to controls, just a few months ago is a important new finding in the neuroscience of ME and has implications for exploring cognitive function and dysfunction (in my opinion)
https://www.s4me.info/threads/limbi...e-me-cfs-2021-xia-li-et-al.23110/#post-387719

So if you could tell me what you would like specifically and in what setting, I will try to give suggestions over time (as can’t do it all at once as I have quite abit of PEM to sort out myself….) So far you sound like you were on the right track but need some clarification.