Neuropsychiatry referral NHS - any point ?

[Valentijn]

I'd never contemplate any in-patient psych program for ME/SEID. The very thought of it is indescribably creepy.

 

[Research 1st]

I'm concerned about the false dichotomy according to which there is true ME and misdiagnosed depressed patients because it does in part agree with the psychosocial narrative.

I doubt that these psychosocial treatments are actually helping anyone except perhaps in a few cases. One need only look at the PACE trial to see a lack of results even in a "chronic fatigue" cohort. Whatever problems these patients ultimately had, the psychosocial approach was a failure.

Hello, I'm confused as to what you mean (I've having big problems understand cognitively so please excuse me if I have missed your message or am getting my wires crossed, which is most probable! I think I know what you mean and I'd agree.

The OP was asking about should they go see a 'shrink' and I was saying if that's OK and you need one, but otherwise be very wary. I don't see how there' a false dichotomy re: ME vs misdiagnosed? I mean I can see if you haven't had my life, so I guess that's where we agree to disagree. I can still respect your opinion though and out of (my experience) I can see, structurally, what you mean.

Here's why I know I'm not biased, as many times I have 'road tested' and 'viewed' the products of CFS/ME - various human beings in various states of health, in hospital in patient admissions. (I've been incarcerated in these CFS 'rehabilitation' units as a youth and as an adult. Some patients as severely affected as me who are as old are now deceased). So on this basis, I have an most unusual 'life time experience' engaging with UK NHS psychiatry over decades and just wanted to let you know this, that I don't have an axe to grind, my bias (we're all biased) is based on experience of in-patient admissions that I think if you're outside the UK, is hard to find because the cost if funded by the UK tax payer. In America, for example, my bill may have been $500,000 or more each time, because bed's cost a lot of money over months. Ironically, as cost is not an option in a 'specialist' state funded neuro psych ward, you can piratically live there. That is not fun, if you need to leave!

I've been inside for months at a time, months, not days or weeks. I therefore know precisely what goes on be it ER, Respiratory wards, Psych wards, Neuro wards, because the hospitals became my home and I learnt all the staff's names and befriended them even. I saw 'CFS' patients (walking around into my room who said they drank alcohol, smoked, traveled independently), I saw a few 'ME' patients (some with eye masks, can't speak or move). This is all inevitable with a heterogeneous group of people all labelled with the same 'thing', who never had any tests!

I experienced lots and lots of mistakes. and of course, mistakes lead to neglect. Neglect is form of abuse. It wasn't just psychiatry that did this to me, they all did it. (Psychiatry was just the worst).

When I told the staff what they did to me and other patients was wrong, they ignored me, and sang from the hymn sheet that i was being 'resistant' and should 'comply' with what the others did. To me, this demonstrated the attitude of these 'experts' to not be able to differentiate form people moderate or mild affected and someone bedridden. They would not accept that 'severe' forms exist, and people are only severe because of their attitudes and beliefs making them 'deconditioned'. I was chastised for failure and others, they were praised for recovering. ('They', being the visiting patients they told me about, or the odd one that would pop in to say hello). All nice people, I got on with, but didn't recall any of the classic ME symptoms at all. As I was mild, then moderate, then severe I can remember what ME feels like, when not housebound and actually able to participate, initially, in some form of life although restricted in nature.

The recovered people told me they were not on any medical treatments. They were on behavioral modification programs. (Diary, writing down how far they walk, going to bed at exactly the same time, almost obsessively).
Not once did they report the barriers to this I had when even moderately affected at first: Pain, Low blood sugar, Vertigo, Shortness of Breath, Orthostatic Intolerance, Chest Pain, Insomnia, Infection, Severe headaches, Tinnitus, Seizures. Thus they 'complied' very well with increased activity and were back home. Good for them, but they didn't have ME obviously, because ME does everything I just listed.

Thus the 'cured' ME patients in Hospital I met (or told about also) are living, walking proof that people diagnosed (I call misdiagnosed) with CFS (who have no symptoms of signs of ME) are indeed, mentally ill, because the cure, was their mind, via alteration in beliefs. These are the clients psychiatrists see, but they give an unfair bias, because psychiatrists believe that if some patients can be helped with psychological therapy, then all patients can. And there is your danger in terms of hospital based therapies and neuropsychiatry in the NHS in the UK. Psychiatrists know very well that you need an inpatient admission for someone housebound, they can get you in, they will offer you 'treatment'. The naive patient, walks in not knowing failure is not accepted. When you fail, they will deface your medical history, by making wild assumptions as to why you fail with CBT and GE. Future doctors read this garbage. You thus will find it harder to be believed in the future.

What I did see, is that there are 'cured' patients, because I met them. Literally. These people, told me they were depressed but took various pills and potions and chose a different way of life to help them cope. For me, that is relevant, and not a false dichotomy because their treatment was that of CBT and they did not report the symptoms of ME when I asked them (autonomic dysfunction, infection feeling,muscle weakness pain, cardiac dysfunction etc). They said they just felt 'tired all the time', or as the English say, ''knackered'.

They told me the way to health was through pacing and antidepressants elevating their mood. This is the converse as to what PWME find, as they can't tolerate antidepressants (many other meds and chemicals) and pacing never cures them as the disease is totally unpredictable and no matter how much you pace, you crash from minimal tasks, or indeed with no tasks at all - it just happens as part of the disease process.

1) I was told this also in person, by the psychiatrists that they get people back to school and in employment.
2) I have met them, they are real people and actually I kept in contact with some of them because I liked them and they came to the same conclusion as me, that they never had ME. That's important, the patient themselves (not my belief) telling me this!

Both misdiagnosed ME (via Fukuda CFS) and ME are victims. Psychiatry can exploit this, because they are partly telling the truth by denying organic CFS and ME. For example:

If you read that bizarre (Post IOM release of SEID) rant by Edward Shorter (not a doctor) and other doctors (who deny ME or CFS exists), they like to point out that its' wrong to tell people without disease, they have a disease. I would agree. The people I met, had joined a CFS charity (pointless as they didn't have it), did socialize with people like me virtually (pointless again), and then later once either instructed how to get out of their 'fatigue syndrome' or indeed personal mental health battles, they had their lives back after years wasted. For these people, they can spend a long time 'stuck' with a belief they have ME CFS when they clearly don't have an organic disease (no symptoms, no signs, no treatment but are 'cured'). This is the fault of health agencies creating a ME (CFS/ME) that requires no tests or signs of neurological dysfunction!

People will always be misdiagnosed, indeed, routinely with Fukuda CFS and now SEID to a lesser degree.

From my own eyes, I saw that UK NHS psychiatry 'invite in' two subsets of patients.

1)They like to snatch bedridden people off wards or their homes for not recovering as they are very severely ill.
2) They like to invite in people who are misdiagnosed with a chronic neurological disease (ME), in which they then promote to other patents as 'recovery stories'. If you talk to these people, as I've said before they don't have any of the core symptoms of ME, even at their worst, but they still were diagnosed, ergo they were misdiagnosed. Without question.

I think as long as patients (with any form of ME CFS) know what they're letting themselves in for with CFS psychiatry contact in the UK's NHS, then there is no harm in psychiatry as long as the patient is needing to see a psychiatrist and isn't misdiagnosed. Conversely, if you are 'accused' of having ME because you believe in ME, then seeing a psychiatrist can be incredibly dangerous if you physically cannot leave the premises once your paths cross and their 'theories' of child abuse, overbearing mother, absent father, having no friends anymore, being unemployed runs riot.

There is a deep irony, that as ME is a neurological disease (like any other), the inflammation in the brain cells and CNS will cause neuro psychiatric symptoms in many patients, such as anxiety, but the patient is too worried to tell anyone, because of keeping within genuine neuropsychiatry (such as when someone with Parkinson's may see a psychiatrist) one tends to get shoved into the behavioral modification psychiatry, and that is where a torrent of medical mistake can begin.

Regarding the start of the thread with the OP asking what to do?
On balance, speaking from direct experience if you have organic disease of unexplained cause, and you aren't overtly troubled mentally, then don't engage with ME CFS psychiatry.
The exception being....
If you can walk, if you can get a bus/car/train and physically be independent then there's no harm in seeing what these people have to offer.

I never was severely affected. I've met psychiatrists walking and 'free' and also not so free! So I know, and I can see the great benefit in engaging with people who can drug you to forget your pains (I'd prefer counseling and psychology personally) when times are awful. For suicidal people that can be live saving. I'd never be blinded enough that because doctors and other staff abused me, to believe all people will do this to others, of course not. (The likelihood just increases when the words ME or CFS appear in conjunction with severe disability).

I hope that makes sense, some sense anyway and that I think all adults should chose their own destiny, but when engaging with health services, just be a bit aware that what can be advertised or what appears to be 'useful' for some, may be detrimental for others!

In ME CFS in-patient admissions in the UK, the general rule of thumb is, if you are bedridden you are a somatizer and need rehabilitating mentally. If you are recovered, you are to be praised and respected. Where are the videos from the psych lobby showing bed ridden ME patients unable to be treated? Not one has ever been produced! What we see is people smiling and happy, and standing upright. This is the message, the message is you don't have to be severely affected (which is a medical lie).

This needs to change, and will do once patients can know what illness they have, using tests to actually decipher the riddle for their self report symptoms. We need to have tests, such as a TILT test and cognitive testing and move away from labels based on 'fatigue' for this to happen.

All the best to everyone.

 

[Valentijn]

@themjay - There's comments from a couple ME patients in the discussion at

who were patients there. I haven't read them thoroughly, but they seem quite relevant.

 

[Sidereal]

Conversely, if you are 'accused' of having ME because you believe in ME, then seeing a psychiatrist can be incredibly dangerous if you physically cannot leave the premises once your paths cross and their 'theories' of child abuse, overbearing mother, absent father, having no friends anymore, being unemployed runs riot.

Great post and I agree so much with this statement. I don't see why a person would voluntarily make themselves known to psychiatry services. What is to be gained from it? A psychiatrist cannot help you with your ME symptoms. I think a big part of surviving with this illness in psychological terms is letting go of the notion that NHS doctors can help in any way.

 

[Research 1st]

I don't have the guts to name these places, but you can probably guess they are the places you've read other patients talk about, linked to certain highly respected ME deniers! The top dogs are careful not to psychologically molest you directly, they make sure other people do it for them. They can thus plead their personal innocence in future court cases when you are found to have brain damage due to a chronic low grade encephalitis, and blame it on ''policy at the time''.

This also means the people, staff members in hospitals whose names you remember (I remember all their names) you attempt to sue as an adult, will then claim they are an innocent bystander and were only doing what they were told, which of course, is partially true (they should still use their own clinical judgement though).

With an NHS outpatient appointment one would not need to worry about such skullduggery. Just meet them in clinic and if you don't get on and can't see a way forward then don't return. That's how contact with 'hospital' is for most people of course, although with ME it's estimated this is not the case for 1 in 4 of us.

I'm glad to hear people can make their own decisions to be pro-active in decision making, however we are adults. It's the children I worry about the most and the young adults like Karina Hansen and many other un-named families who don't contact social media or charities of forums in desperation to make their family members case public or just ask general questions.

Life is so very complicated and full of chances, a chance is you have loved one to care for you and defend you, if at least spiritually. Perhaps this is a reason so many PWCFS/ME are not depressed.(Our families or partners sacrifice their own careers and freedoms to care for us, thus keeping us going mentally).

We aren't all so lucky though. Even if 'luck' means to have your own chance of a productive life scuppered, and that of your carers who look after you to keep you alive (mental health being a critical component to prolonging life).

I imagine what it must be like to have no one, and what this means when you live in silence. How do people feed themselves? How do you pay bills to heat the house? Are these the forgotten people? Think of how many people have broken families, no money, and can't even apply for benefits (social security)? How do these people live? Maybe the don't and expire with the next coming season.

 

[Tired of being sick]

There are probably Millions of people who have CFS/ME but are too ignorant to know it..

There are 2 in my family alone.

Well 1 now as the other has been dead for 13 years now.........

I know this because I lived it for most of my life..

I myself always knew there was something very wrong with me my entire life..

It took me over 32 years to figure it out......

 

[jimells]

In my opinion it is best not to make yourself known to psychiatry services unless you have a mental health problem that's interfering with your life

Entering that system leaves you vulnerable to future incarceration in a psych ward

Damn scary! Here in the U.S. the usual attitude of malignant neglect seems tame compared to the U.K.

Just what is a 'neuropsychiatrist' supposed to be, anyway? Is it the same old psycho-babble with a new name that sounds more scientific?

The Yorkshire Centre for Psychological Medicine (YCPM) delivers biopsychosocial (holistic) care

biopsychosocial = holistic ????

 

[Sidereal]

Just what is a 'neuropsychiatrist' supposed to be, anyway? Is it the same old psycho-babble with a new name that sounds more scientific?

Yep.

 

[jimells]

When I told the staff what they did to me and other patients was wrong, they ignored me, and sang from the hymn sheet that i was being 'resistant' and should 'comply' with what the others did.

An image of The Borg from "Star Trek" came to mind while reading this.

YOU WILL BE ASSIMILATED. RESISTANCE IS FUTILE.

I imagine what it must be like to have no one, and what this means when you live in silence. How do people feed themselves? How do you pay bills to heat the house? Are these the forgotten people? Think of how many people have broken families, no money, and can't even apply for benefits (social security)? How do these people live? Maybe the don't and expire with the next coming season.

Frankly, it sucks big time. My life is fairly comfortable (mostly) these days, now that I receive Social Security disability, Medicare, and I'm no longer constantly fighting for benefits, fighting a civil law suit, or filing for bankruptcy, all at the same time! Since my home is paid for, and I'm too sick to spend money, I get by OK. I actually have some extra money right now, until I spend it all on home repairs this summer!

Two years ago, just before the government relented and "gave" me benefits (after SIX years of fighting with them) I was not doing well at all. My only income was food stamps (at least I could eat). My elderly mother sent me money for electric and phone. I got fuel oil from the Salvation Army and the Citgo fuel program (now defunct after Hugo Chavez died). Fortunately the state allowed me to have a case manager who took me to the grocery and doctors.

I experienced suicidal ideation every day, and death certainly looked preferable by the end of three-day migraines at the high end of the pain scale. Fortunately these symptoms are much improved. Although I still have frequent migraines, the pain is much less.

The social isolation is still tough to take. As you say, we are forgotten. When I received regular benefits, I was kicked off Medicaid, along with my case manager, and the social contact she provided. I haven't been to a doctor's office for almost two years - it's too far for me to drive 70 miles round trip, the closer doctors are a complete waste of my energy, even if they would accept me into a new practice (around here, one has to 'apply' to be a patient, like applying for a job)

I regularly go a week at a time without seeing or talking to anyone besides my little birds, but it doesn't seem to matter much any more, since even visiting on the phone wears me out. In an age of universal spying, sometimes it seems strange that a person can completely drop out of sight and no one notices, even in a rural area where everybody knows everybody else's business. All the people that I used to see regularly, did they forget I exist? Are they talking behind my back? Or am I just an attention-seeker (like it says in the doctors notes) and paranoid?

 

[Aurator]

Just what is a 'neuropsychiatrist' supposed to be, anyway?

It's a psychiatrist who really gets on your nerves. The British are uncannily good at producing them.

 

[OverTheHills]

bravo Aurator
OTH

 

[SOC]

It's a psychiatrist who really gets on your nerves. The British are uncannily good at producing them.

Seriously, though, isn't the neuropsychiatrist the doctor you have to see to get evaluated for cognitive dysfunction of various sorts, with no implication of treatment for psychogenic illness? Or is just all part of the same sneaky blame-the-patient game?

 

[daisybell]

Seriously, though, isn't the neuropsychiatrist the doctor you have to see to get evaluated for cognitive dysfunction of various sorts, with no implication of treatment for psychogenic illness? Or is just all part of the same sneaky blame-the-patient game?

I think that would be a neuropsychologist... As far as I am aware, a neuropsychiatrist is specifically for cognitive issues associated with psychiatric illness......

 

[ukxmrv]

The Neurological Hospital in London does have Neuropsychologists who carry out cognitive tests but if you have ME (in my experience and other patients which have seen them) they claim that any results are due to depression or malingering.

I can't emphasise enough how badly this hospital treats ME patients and to what lengths they will go to.

 

[Aurator]

The Neurological Hospital in London does have Neuropsychologists who carry out cognitive tests but if you have ME (in my experience and other patients which have seen them) they claim that any results are due to depression or malingering.

I can't emphasise enough how badly this hospital treats ME patients and to what lengths they will go to.

It all looks wonderfully compassionate and understanding in the video.

There Dr Segal tells us that 60-90% of patients "make a full recovery". She also tries to illustrate the illness (at 2.28) with a strangely inept analogy to a bird perching on a rock on a cliff top that flies off and pushes the rock down the cliff on to whoever is below. She asserts that there is no point looking for the bird because "you won't ever find it".

I'd like to know what happens when you follow their treatment plan to the letter and you still don't get better. Is that when the psychotropic medicine is wheeled in? Or did they already uncork that particular bottle for you from the word go?

 

[A.B.]

I'd like to know what happens when you follow their treatment plan to the letter and you still don't get better. Is that when the psychotropic medicine is wheeled in? Or did they already uncork that particular bottle for you at the start?

I think that's when they change your diagnosis to something else. Something that suggests you don't want to get better.

 

[jenny39]

https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/NPSY/Pages/Home.aspx

I recently had a referal to see a neuropsychiatrist here after over 10 years of an ME diagnosis and when waiting for the referal I got a diagnosis of pseudomonas aeruginosa, I saw the neuropsychiatrist in the homeopathic hospital for integrated medicine next door to the national and as I am already under the national and have seen a psychiatrist before I had epilepsy surgery I went ahead with the appointment. I was seen again 8 months later and now am seen every 6 months. They now admitted that the infection was the cause of encephalitis/meningitis that no one could spot.

They asked about my life growing up mainly in the first appointment lasted about an hour and then things such as work history if it any help. I was offered a mild anti depressent but refused these and then next appointment just again was hour of talking I was then asked myself if I thought symptoms were caused from infection I had that I had probably picked up in a hospital in first place. I said you the doctor not me but I feel alot better since I got antibiotics as resistant to usual one used for infections.

 

[nomad]

I think I've now given up with the NHS.

Their attitude to everything is psychosomatic & if a treatment works then its placebo. Unless its CBT or antidepressants.

Aside from the Accident & emergency departments & acute care, its a primitive parasitic institution feeding off the public purse whilst condescendingly dismissing everyone as mentally unstable.

Its been a shocking eye-opener. Great in theory but intellectually dishonest & lacking in any motivation to heal.