Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Neuropsychiatry referral NHS - any point ?

Discussion in 'General ME/CFS Discussion' started by nomad, Feb 26, 2015.

  1. nomad

    nomad Anyone interested in a London Support group?

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    My neurologist has suggested I see a neuropsychiatrist for my muscle cramping and muscle pain. I'm wary as I do not want my condition to be dismissed as being psychosomatic. Has anyone had any experience with neuropsychiatry and what options they can offer me.

    Thanks
     
  2. Research 1st

    Research 1st Severe ME, POTS & MCAS.

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    As a general rul of thumb, if UK based and you don't suffer from persistent troubling psychiatric symptoms due to ME CFS, then stay away from any NHS based 'neuropsychiatric' team, that 'treats' Chronic Fatigue of unexplained cause, what they call CFS/ME.

    As I have seen a neuropsychiatry team in the NHS, I will give you my two cents why I feel this and many other people do as well who are severely affected:

    The psychiatrists I saw in the NHS, copied the beliefs (word for word) about other well known CFS psychiatrists beliefs, behaviors and avoidance of their own minds accepting the existence of organic ME, and filtered it down to ''chronic fatigue''. They couldn't even bring themselves to mouth the words chronic fatigue syndrome to me, such was the allergy of the admission a chronic illness was existing.

    I wasn't aware they would do this to me, but I was bed ridden and could not walk out. Someone more physically able, who is sitting in an out-patients department won't have to worry. Your time and effort may have been wasted, but you won't be trapped physically, with these people. I was, so my experience is somewhat unusual.

    The 'ME CFS specialists' explained to me ME is a physical illness, because symptoms are real to patients. They then made sure I understood there was no longer any underlying physical cause wrong with me, and they told me they know this, as a fact, that ME CFS does not have an untreated component. Sadly, we now know this is totally untrue. (They aren't aware patients read biomedical research and think we are all exclusively directed by 'patients on the internet'). NB: This view, again, comes from their fellow psychiatrists personal bias, not from any medical research findings. This is what comes from following a religion (progressive behavioural psychiatry is a belief, effectively a cult). A 'shrink' in the community is actually a much better, open minded doctor to see, because they work privately and independently.

    I was told ME doesn't exist and CFS was based on a form of community acquired neurosis, caused by fear of exertion and activity, that used to be found hundreds of years ago and was certainly not caused by an undiscovered infection of any kind. They told me this belief in an infection leads to psychological stress, which activates the central nervous system & immune system leading to deconditioning and overtime, weak and painful muscles. On that basis, the symptoms are indeed, physical...they said. Clever, double speak that someone with sleep deprivation and cognitive problems won't 'catch on to', until it's too late. Too late, as in the they locked the door and I couldn't get out. (Not literally my door, the door to the ward which because I was naive and young, I didn't realize was a locked unit just another ward because I was transferred everywhere by bed looking up at the ceiling).

    We have an exception to the rule:

    There are good NHS doctors out there, and there also good psychiatrists. Dr Puri, for example is an excellent highly empathic biomedical psychiatrist, but his beliefs that ME is an organic disease, is shunned by most of his colleagues. So It all depends, what reason you have for being ill, (NHS diagnostic tests are inadequate for accurate diagnosis) and If you feel you fit into this 'psychiatric' category. If you do, then neuropsychiatry (In the NHS) may be useful, I doubt however you do agree with the ME CFS is a 'belief' category, so on that basis you're rather stuck!

    What we know from 30 years of failed psycho-behavioural research in people with organic disease, is that an individual with accurately diagnosed ME or CFS will be unable to prevent the chronic inflammation and immune activation that lead to a whole host of metabolic and endocrine problems that keep you ill. Thus, psychiatry will NOT be able to relieve your muscle pain and other symptoms you have, if you have the correct diagnosis.

    There is one exception to the rule of avoiding psychiatrists in the UK, if you have ME or CFS.

    If you can find a good neuropsychiatrist who is focused on trying to treat isolated neuropsychiatric symptoms due to your underlying physical disorder that they admit they cannot reverse, that they admit this in person to you and in writing then if you have troublesome anxiety and depression that cannot be explained by extensive testing, then I would consider seeing a neuropsychiatrist and have some degree of confidence they are at least trying to help you.

    Conversely, stay away from a 'fatigue' based team of neuropsychiatrists or psychologists allied to any UK NHS Hospital. This would be (ironically excellent university grade hospitals), such as St Barts in London or the National Hospital for Neurology and Neurosurgery (also in London), and Essex.

    These hospitals, (very good outside the ME CFS sphere I should add) have the highest rates of 'stories' from patients of abuse and neglect, and conversely you're less likely to be harmed in non specialist hospitals, because
    they don't run a 'specialist' team focused on convincing you you aren't organically disabled.

    Think of some of the key problems of having ME CFS and engaging with physicians in the UK's NHS system:

    *They aren't trained in your disease process (the GMC do not recognize organic ME CFS and teach doctors).
    *Physician bias is written down in your medical records and will not be removed unless a court orders it.
    *Negative medical records influence other doctors to dismiss you in the future irrespective of your protest.
    *Doctors are well meaning, good people but their discrimination is 2nd hand, other people influence them.

    With ME CFS diagnosis, this allows for people with mental health problems are the main reason for why they feel 'ill' to masquerade as someone with an crippling organic disease they will have their whole life. This is not the patients fault, or doctors, it's the fault of diagnostic criteria, such as the CDC Fukuda criteria in America. The British diagnostic criteria includes post exertion malaise (feeling worse after activity), but this 'malaise' (as no tests confirm the diagnosis) can be due to emotional problems, not physical. ME CFS diagnosis is a mixed bag, some people won't have it. These misdiagnosed people are 'helped' by psychiatrists to get back to work and lead a full life. This means people who may harm you, genuinely want to help you, and there is the danger of the ME CFS diagnosis and why diseases required diagnostic tests or abnormal signs. ME CFS shuns this, as does the newly suggested IOM 'SEID' fatigue based condition in America.

    Neurotic people do exist, and they do end up in these specialist ME CFS NHS centers.
    They do recover and they do walk out after months of 'rehabilitation' using CBT, GE, and psychotherapy with their families, partners, etc. I have met these people, they are perfectly nice normal people, just with 'problems' that are adjusted with new ways of thinking. Unfortunately, that is not a life with a chronic illness such as ME CFS.

    These misdiagnosed patients unfortunately help convince other hospital and clinical staff members that this means with enough hard word and mental effort ANY ME CFS patient can also recover. So tread very carefully if any in-patient NHS admission is being considered, or was ever to be considered.

    Some well respected influential psychiatrists have incredible power and can detain people even not under the mental health act! This happened to me. I was tricked and effectively held hostage because I couldn't sit up right, never mind attempt to escape to tell other people what was happening. This experience, without doubt has helped to ruin my life, on top of it being ruined by having ME anyway since I was a child. No psychiatry (ironically) can ever erase what my mind experienced, because of the acts of psychiatry against me. Remember this if being offered an inpatient admission in the UK, into a neuropsychiatric center to 'treat' your ME CFS.

    Psychiatrists who believe you have a 'somatization disorcer' (which they believe is ME) can keep you in for months,, and they can extend your time to over a year. One person I met (not an ME CFS patient) has been there for apparently over 15 months. Yes, in this time, the patient can go outside on agreed trips, they can even go home, but the patient can soon become institutionalized and actually want to come back to the psychiatric ward. Of course, this won't happen to you, but this can happen to people who get lost in the loop, that they begin to blame themselves for their own disease process, and start believing (through co-ersion and suggestion 'automatic negative thoughts') that their disease based problems are based on their mind's error and thus end up taking a whole host of psychiatric medications, which will all increase fatigue, and worsen the symptoms of ME and so of course, you never get better and don't leave in a few weeks, more like months. (Anti psychotic, anti convulsant (for sleep) medications are notorious for making all sorts of patients relapse and can have some unexpected side effects). So perhaps the safest option if you can afford it and aren't housebound (if you think it's relevant) is to see private psychiatry, at your pace, and at your direction if you feel this is relevant. This way, you are in control and you dictate your own fate.

    A core problem with the UK's 'free' NHS care, is that if admitted to a hospital once you are laying in a bed, you are at their mercy, especially if due to poor sleep and (expected) adverse stress response, you may become bedridden when before you were able to walk gently to the shower, canteen etc or use a wheelchair. This has happened to me and I speak from experience, however, we are all individuals and many factors can be involved in patients having adequate, good or poor care in the NHS.

    So to conclude, I will return to your initial question and answer it with one paragraph now you have some background.



    For many people, that one line above explains what your neurologist thinks about the legitimacy of your physical symptoms! I don't know you, and maybe you have been extensively tested and all the tests are negative? This would explain why your neurologist has suggested this path. It may not to do though.

    If your investigations have been limited to an MRI and a neurological exam, then there are many other reasons for muscle cramping and pain, that in ME CFS can and will be associated to:

    Poor blood flow (elevated blood viscosity, autonomic dysfunction)
    Inflammation (chronic cytokine expression)
    Immune activation from viral and bacterial co- infections (rarely tested for by the NHS).
    Rheumatic pain and myalgias.
    Nutritional deficiencies (very low Vitamin D can cause muscle pain).
    Side effects of medications.
    Other conditions known to caused muscle pain!


    These above have precisely nothing to do with psychiatry and will not be reversed by the NICE guidelines recommendation of CBT and GE 'treating' these problems, which have been proven to not work in large scale studies on people with unexplained chronic fatigue (F48.0), such as the PACE trial, which is worryingly, much weaker than CFS ME G93.3.

    And there, is your problem. The NHS 'care' in the UK for chronic ME CFS does not exist, there is no effective evidence based treatment for ME CFS, and so the best thing to do, is be aware of this and analyze your own medical history of investigations into the causes of your symptoms:

    To conclude, if you have signs of autonomic dysfunction, such as orthostatic intolerance, elevated pulse on upright posture/standing, worsened cognition standing or upright, exhaustion and balance problems I would first ask for
    a TILT test, before even considering going down a psychiatric route (Unless you have psychiatric symptoms dominating your life that don't look like ME CFS or autonomic dysfunction). I would also ask for a battery of endocrine tests: E.g. Short Synacthen test, to check your adrenal function, and a Glucagon Stimulation test to check your pituitary function. (NB: These are hospital based tests and cannot be done at home). If you have cardiac issues you also need: 24 hour blood pressure monitoring, 24hr ECG, and an echocardiogram (ultrasound).

    Do not walk into the arms of psychiatry if you aren't mentally unwell, especially if you have a potentially complex condition with a whole host of organic dysfunctions that can fool physicains (who haven't tested you thoroughly) into thinking you organic symptoms are organic. Most organic diseases can present with chronic fatigue, anxiety, depression, mood swings, even phobias - not recognized, this is then refered to psychiatry.

    The next path?

    If you have a diagnosis of ME CFS, then you may well have autonomic dysfunction. This may cause the pain you describe. If you have a test, a TILT test and it's positive, then you could then gather up a neurological diagnosis, such as POTS, and the last person your neurologist would then be thinking of sending you to, would be a neuropsychiatrist!

    Whatever happens, always feel free to ask questions here. There are many knowledgeable people and patients too, but at the first point of contact, always consult a medical professional first. Along with this, trust your own mind and judgement, and remain in control of your own choices and don't feel preassured to have tests or see people you don't want to.

    Take care and good luck.
     
    Last edited: Feb 26, 2015
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  3. A.B.

    A.B. Senior Member

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    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.
     
    Last edited: Feb 26, 2015
  4. daisybell

    daisybell Senior Member

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    I can think of no reason to see a neuropsychiatrist for muscle cramping and pain. It seems to me that the neurologist must think that you have a psychiatric problem. I would be very wary of the potential consequences of proceeding down that path....
     
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  5. SOC

    SOC

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    I think as long as unexplained chronic fatigue is diagnosed as ME, there are going to be people with an ME diagnosis who actually have MDD or other conditions that present with chronic fatigue. In some cases, CBT and GET may relieve some of the fatigue in those patients. This may be the small kernel of truth in the claims of success by the CBT/GET practitioners.

    That said, there are so many reasons for chronic fatigue, it seems unlikely a large number of patients presenting with chronic fatigue would be "cured" by CBT/GET. More likely those patients need medical treatment for, say, thyroid problems, OI, and so on. Hence the lack of results in the PACE trial.
     
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  6. Woolie

    Woolie Senior Member

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    Agreed, @A.B., I think this is an assumption that needs actual testing. I'd like to see whether any of the success stories are "real". Its also possible that these cases that seem to improve are very mild cases that showed some spontaneous remission. Or that the self-reported improvement is high - they feel a boost from their new "disease free identity", but the person's activity still indicates they have to limit themselves as much as before (so not actual change in physical functioning).
     
  7. msf

    msf Senior Member

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    Hmm, you don't seem crazy, I'm not sure how this would help.

    Ok, I was being a bit glib there, but I don't see how it's going to help you with your muscle cramping/pain. I don't see how they could refer you for this, unless of course they think you are imagining it. If you don't feel that you are, then I wouldn't bother with psychiatrists.

    Obviously any of us could be imagining our symptoms, but I fail to see why someone would develop the belief that they have muscle pains.

    There was a programme on Channel 5 yesterday about a GP's practice which gave a good illustration of how first impressions are often wrong. A patient claimed that he could only move his fingers on his left hand quickly, even though he could still tie his shoelaces, play golf and shake hands with his right hand . I don't know what the doctor was thinking, but I was sure it had to be psycho-somatic. He was sent for a nerve-conduction study, and at the end fo the programme it was revealed that he had dystonia. It made me realize that the impulse to assume that people are malingering (translation: exhibiting psycho-somatic illness) is a very natural one, but that is often a very misleading one.
     
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  8. msf

    msf Senior Member

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    Haha, I looked up psycho-somatic disease, as I was curious to see how it was defined. I'm sure psychiatrist's would offer a more complicated definition, but I think this one might be more honest: http://www.patient.co.uk/health/psychosomatic-disorders

    Basically, it's not clear what it means.
     
  9. ukxmrv

    ukxmrv Senior Member

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    Nomad, did they want to send you to the National Hospital in Queen Square London?

    My suspicion would be that your Neurologist wants to get rid of you and they want a Psych assessment to do so.

    My experience was that this was a disaster for me and an attempt to stop any further investigations into my physical symptoms. I had to find another doctor to treat me but this took years. In my case it was injuries (including head injury) after a road traffic accident but a pre-existing ME diagnosis meant I wasn't treated with respect.
     
  10. nomad

    nomad Anyone interested in a London Support group?

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    @Research 1st thank you for that great post. Exceptionally informative.


    Yes I first went to the National Hospital at queen Square and saw an incredibly patronising and ill informed doctor there. He simply said there was nothing wrong with me but did order a battery of tests which all came out negative.

    I got disillusioned as no medication was being offered for the pain, eventually I insisted through my GP to contact the neurologist for something to help with the cramping, and even gave them a list of potential medications I considered helpful. I reluctantly got prescribed pregablin.

    Since then the nuerologist has been cancelling and delaying my next appointment. In the meantime I had a severe asthma attack and ended up in hospital in South London for several days. The respiratory consultant strongly suspected a underlying neurological cause so wrote to the National Hospital in Queens square, who never replied. So she arranged for me to see a neurologist at the local hospital (south London). He was a lot less patronising, and did spend over an hour with me debating, I did make clear that I strongly believed M.E. had a viral component and inflammation was involved.

    I also explained that CBT has a very poor track record, and I am quite self aware and have no need to conjure up an illness given that I have many interests that I'd much rather be pursuing. However, he kept trying to persuade me that nuero-psychiatry was a 'holistic' approach and I responded that it seems like you're dismissing my symptoms as being psychosomatic.

    How the appointment was left was that I refused the nuero-psychiatry, but said I'll keep an open mind and research it further. But in the meantime as you're unable to give me diagnosis I need medication to help with the pain and also medication for the muscle cramping, and this is now my focus.

    He was very reluctant to focus on symptom relief, but eventually said I should ask my GP for a referral to the pain clinic.

    To clarify I have no underlying psychiatric problems, other then anxiety which I believe to be a product of systemic inflammation. So, after reading the very helpful responses on this thread I will most certainly not be taking up their offer!

    In fact, other then pursuing the pain clinic I've now decided to opt out of the NHS altogether. The entire experience has been shockingly demoralising. It is a cult, they self-reinforce unscientific belief systems in exchange for peer approval and a comfy career.
     
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  11. nomad

    nomad Anyone interested in a London Support group?

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    Yes, I strongly feel my issues are related to Inflammation (chronic cytokine expression) amd Immune activation from viral and bacterial co- infections. I did mention this to the nuero and also said I was aware that the NHS does not test for this.

    I appreciate I will have to go private, and in relation to my anxiety which can be severe at times I have considered seeing a private psychiatrist who may be willing to prescribe me Klonopin or Xanax for very occasional and responsible use.
     
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  12. daisybell

    daisybell Senior Member

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    Good luck with whatever you decide on pursuing!
    Sorry if I'm saying the blindingly obvious, but have you tried magnesium supplementation? That's the only thing that helps me with my muscle cramps...
     
  13. nomad

    nomad Anyone interested in a London Support group?

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    Hi @daisybell yes I've tried magnesium and it does help a little but its such pain to apply transdermally.
     
  14. themjay

    themjay

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    I have just been offered this as my last choice of NHS treatment.

    Apparently the doctor in charge is adamant that M.E is curable so long as you attend with an open mind.

    Please note the testimonials – they have the air of forced confessions!



    http://www.leedspft.nhs.uk/our_services/YPCM
     
  15. nomad

    nomad Anyone interested in a London Support group?

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    I loved the fact that my NHS nuerologist reffreed to neuro-psychiatry as holistic which takes a broad minded approach. I'd never heard such bare faced pseudo-science peddled so brazenly in a NHS hospital.

    It comes down to the fact that they don't know what the problem is, or rather they do not want to now, so it's dismissed as psychosomatic.
     
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  16. Aurator

    Aurator Senior Member

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    That's appropriately worded; it would definitely be my last choice of treatment.
    This is double-speak. The doctor means an empty mind, not an open one, and s/he's adamant it's curable only because s/he's convinced it's all in your head.
    They look false, never mind forced.
    Anyone who's genuinely ill with the physical disease ME/CFS should steer clear of that place. Your treatment is likely to be little more than legalised abuse. The whole venture is an exercise in bad faith, designed to quietly sweep you under the carpet.
     
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  17. Sidereal

    Sidereal Senior Member

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    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 and requires treatment. If you do, I'd get a private psychiatry consult instead of going down the NHS fatigue clinic route where your ME/CFS itself will be treated as a psychiatric condition and you will be prescribed harmful or at best useless treatments like psychotherapy and exercise. Once you agree to see an NHS psychiatrist you become a psych patient. Entering that system leaves you vulnerable to future incarceration in a psych ward if you deteriorate to the point where you're bedridden and cannot look after yourself.

    Best of luck with whatever you decide to do.
     
  18. nomad

    nomad Anyone interested in a London Support group?

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    I also attended a few sessions at the NHS CFS/ME clinic previously based at Barts hospital in London but now in St Leonards hospital in Shoreditch.

    They also took the pyschosomatic route offering CBT and graded exercise. Their level of education and what was on offer was embarrassing. After a few sessions I politely thanked them for their help and said I will be exploring other avenues.

    The problem with the NHS is that we have brilliant highly educated minds who are made to waste their time on creating brilliantly written, but utterly pointless research papers.

    These minds could be better directed to real world healing, rather then the egoistical pursuit of a career & peer approval, within an industry who's primary motive is profit and where (continuing) ill-health becomes a precious commodity.
     
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  19. daisybell

    daisybell Senior Member

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    Just point them all to the newspapers today!
     
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  20. Tired of being sick

    Tired of being sick Senior Member

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    Sounds to me you have a blood flow/volume problem..

    Talk to your doc about trying Midodrine.

    Google it and research it first so you can present a sensible case to him/her..

    Find a Cardiac Electrophysiologist to order get a tilt table test..
     

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