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MUS, PPS services and integration into NHS primary care - what's happening across the UK?

Discussion in 'General ME/CFS Discussion' started by Dx Revision Watch, Jan 11, 2017.

  1. Dx Revision Watch

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    A custom TinyURL for this thread:

    http://tinyurl.com/MUSnotforME



    Services for Medically unexplained symptoms (MUS), Persistent physical symptoms (PPS) and integration into NHS primary care - what's happening across the UK?

    I've been contributing to a thread in the Members Only forums in which I've posted material around commissioning of MUS and PPS services and their integration into primary care.

    Several contributors suggested this material needs wider exposure and asked that I collate this material in a dedicated thread in the public forums.


    Please add to this thread, now, or in the future:
    • if there are MUS or PPS services or GP managed MUS services or integrated IAPT services implemented or piloting in your own NHS Trust area;
    • if you come across other examples of MUS or PPS services or GP managed MUS or IAPT services in other areas of the country;
    • if you have been told by your GP that your ME, CFS, FM or IBS is now being managed as a MUS or PPS or under mental health disorders;
    • if you have been referred to a MUS or PPS service or IAPT service;
    • if your GP has recently expressed a change of views on the management of ME, CFS or has been pressuring you to accept a referral for CBT or for other psychological therapies.
    • if your GP has recently reviewed your prescription med regime and is proposing to reduce or withdraw any medications that were specifically prescribed for managing your ME, CFS symptoms.
     
    Last edited: Jan 19, 2017
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  2. Dx Revision Watch

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    From 2010:

    NHS Commissioning Support for London

    Medically Unexplained Symptoms (MUS) A whole systems approach

    https://dxrevisionwatch.files.wordpress.com/2013/06/mus-whole-systems-approach.pdf

    -------------------------

    From 2011:

    A brief guide put out by the Royal College of General Practitioners and Royal College of Psychiatrists

    Guidance for health professionals on medically unexplained symptoms (MUS)

    [​IMG]


    Click here for the 4 page PDF [859 KB]:


    https://dxrevisionwatch.files.wordp...-for-health-professionals-on-mus-jan-2011.pdf

     
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  3. Dx Revision Watch

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    From 2011:

    Medically Unexplained Symptoms, Somatisation and Bodily Distress: Developing Better Clinical Services, Francis Creed, Peter Henningsen, Per Fink (Eds), Cambridge University Press, 2011

    Many sections of this book can be viewed via Google Books if a search is done on key phrases:

    https://books.google.co.uk/books?id=UQjdZrkyWkoC&pg=PA246&lpg=PA246&dq=medically unexplained symptoms&source=bl&ots=Rl-P4sR17e&sig=ltfopl_xfceroMG7KHYGc3Ml5iM&hl=en&sa=X&ved=0ahUKEwjN5vS_8bnRAhWSzRoKHVlZDlIQ6AEIVTAI#v=onepage&q=medically unexplained symptoms&f=false


    This book resulted out of a draft white paper by the EACLPP MUS Study Group called: “Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems”

    -------------------------

    From February 2012

    Kings Fund Report

    Long-term conditions and mental health
    The cost of co-morbidities
    https://www.kingsfund.org.uk/publications/long-term-conditions-and-mental-health

    PDF Report 2012 32 pages [320 KB]

    https://www.kingsfund.org.uk/sites/...al-health-cost-comorbidities-naylor-feb12.pdf

    "...Health and social care services in England are not currently organised in a way which supports an integrated response to the dual mental and physical health care needs of patients. The institutional and professional separation of mental and physical health care leads to fragmented approaches in which opportunities to improve quality and efficiency are often missed. Links between mental health professionals and primary care – where most people with mental health problems are supported – have been neglected in many areas. Increasing sub-specialisation and the decline of generalism in hospital settings can create a lack of co-ordination and oversight of patients’ multiple needs (Finlay et al 2011).

    "The time is right to explore how patients with combined mental and physical health needs can be supported in a more integrated way. Several recent policy developments in England create an environment in which there are both strong imperatives and opportunities to improve services for this group of people.

    . The government’s mental health outcomes strategy No Health Without Mental Health places considerable emphasis on the connections between mental and physical health, and gives new responsibilities to Improving Access to Psychological Therapy (IAPT) services for supporting the psychological needs of people with long-term conditions or medically unexplained physical symptoms (Department of Health 2011a).

    . Under the government’s reform programme clinical commissioners have a duty to promote integrated services, as do other bodies such as Monitor and the NHS Commissioning Board. A number of clinical commissioning groups are known to have identified mental health as an early priority for service improvement."​

    --------------------

    Related material:

    https://www.england.nhs.uk/mentalhealth/adults/iapt/

    Adult Improving Access to Psychological Therapies programme


    https://www.england.nhs.uk/mentalhealth/adults/iapt/mus/

    Long Term Conditions and Medically Unexplained Symptoms

    A map to show the locations of the wave one Integrated IAPT early implementers. These sites were launched in September 2016 and are supported by additional funding to develop mental health services within long term condition care pathways. Included in this wave are services for people with diabetes, respiratory, cardiac and medically unexplained conditions.

    https://www.england.nhs.uk/mentalhe...s/sites/29/2016/10/early-implementers-map.png
     
    Last edited: Jan 11, 2017
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  4. Dx Revision Watch

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    From 2013:

    NHS England: Pilot of Enhanced GP Management of Patients with Medically Unexplained Symptoms

    NHS Barnet Clinical Commissioning Group

    [​IMG]

    Open full size flyer here:

    https://dxrevisionwatch.files.wordp...lly-unexplained-sympthoms-kingsfund-may12.pdf

    Note the use of the term “Bodily Distress Syndrome (BDS)” despite the lack of a body of evidence to support the validity, reliability, safety and clinical utility of the application of the "BSD" construct in primary care.

    Note also, the list of illnesses under the definition of “MUS”: Chronic Pain, Fibromyalgia, Somatic Anxiety/Depression, Irritable Bowel Syndrome (IBS), Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME), Post-viral Fatigue Syndrome.


    Extracts:

    May 2013

    NHS England

    PILOT OF ENHANCED GP MANAGEMENT OF PATIENTS WITH MEDICALLY UNEXPLAINED SYMPTOMS

    NHS Barnet Clinical Commissioning Group

    Background

    Medically Unexplained Symptoms

    Definition

    The term ‘medically unexplained symptoms (MUS)’ are physical symptoms that cannot be explained by organic pathology, which distress or impair the functioning of the patient. Patients often present with physical symptoms that cannot be explained even after thorough investigation. Other terms used to describe this patient group include: Functional Somatic Syndrome (FSS), Illness Distress Symptoms (IDS), Idiopathic Physical Symptoms (IPS), Bodily Distress Syndrome (BDS) and Medically Unexplained Physical Symptoms (MUPS).

    Symptoms and Diagnosis

    Symptoms

    Headache
    Shortness of Breath, palpitations
    Fatigue, weakness, dizziness
    Pain in the back, muscles, joints, extremity pain, chest pain, numbness
    Stomach problems, loose bowels, gas/bloating, constipation, abdominal pain
    Sleep disturbance, difficulty concentrating, restlessness, slow thoughts
    Loss of appetite, nausea, lump in throat
    Weight change

    Diagnosis

    Chronic Pain
    Fibromyalgia
    Somatic Anxiety/Depression
    Irritable Bowel Syndrome
    Chronic Fatigue Syndrome
    Myalgic Encephalomyelitis
    Post-viral Fatigue Syndrome

    PROJECT AIMS AND OBJECTIVES

    • To pilot a commissioner initiated, enhanced GP management service for patients with MUS in primary care. Refer to Figure 1 for details.

    • The pilot will be carried out at selected Barnet GP practices (approximately 15) managing a minimum of 10 patients with MUS over 12 months.

    • To identify patients with MUS using an electronic risk stratification tool the ‘Nottingham Tool’ with a review of the generated list at a multidisciplinary (MDT) GP practice meeting for the final patient selection.

    • To enhance post-graduate GP training by providing education and training workshops and focused work group meetings on the management of MUS.

    • The project will also test the assertion that identification and management of MUS would result in savings to commissioning budgets.

    PROJECT OUTCOMES AND BENEFITS

    There are several benefits that could be realised from implementing this project. These are as follows:-

    • Improved outcomes for patients with MUS, better patient experience

    • Improved quality of life

    • Improved GP-Patient relationship

    • Reduced GP secondary and tertiary referrals

    • Reduced unnecessary GP and hospital investigations and prescribing of medicines

    • Reduced GP appointments and out of hours appointments to A&E or GP

    CONCLUSIONS

    There is a high prevalence of patients with medically unexplained symptoms presenting to primary and secondary care services. Patients with MUS are high healthcare service users having a major impact to our local health economy and health outcomes. GPs are well placed to manage MUS patients as this patient group are 50% more likely to attend primary care. We believe that our proposed enhanced management of care by the GP will result in both market and non-market benefits. This proposal has gained approval from the NHS Barnet CCG Primary Care Strategy and Implementation Board, QIPP Board and the NCL Programme Board for the 2013/14 financial year…

    etc.
     
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  5. Dx Revision Watch

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    Last edited: Jan 19, 2017
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  6. Dx Revision Watch

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    Attached Files:

    Last edited: Jan 19, 2017
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  7. Dx Revision Watch

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    In Devon

    http://www.nescn.nhs.uk/wp-content/...dXPsychologicalXMedicineXServiceXinXDevon.pdf

    Devon Partnership NHS Trust

    An Integrated Psychological Medicine Service for Devon

    Symptom Management

    Extract from Page 12

    6 Best Practice

    [​IMG]


    Image via @postersandme


    Note: based on Sharpe's Oxford Model


    The "IAPT Medically Unexplained Symptoms/Functional Symptoms Positive Practice Guide" (July 2014) mentioned in the extract above can be found here:


    https://www.uea.ac.uk/documents/246...ide-.pdf/ac806084-4058-4a2f-89f9-17d04eff6a3b
     
    Last edited: Jan 16, 2017
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  8. Dx Revision Watch

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    In Gloucestershire:

    http://www.2gether.nhs.uk/innovation-award-to-improve-quality-of-health-care/?page=1

    Innovation Award to Improve Quality of Health Care

    15 September 2016

    £75,000

    "The initiative led by 2gether’s Let’s Talk service, aims to equip people experiencing Medically Unexplained Symptoms (MUS) to live a healthier and happier life and reduce unnecessary medical attendance by introducing and evaluating a specialist primary care service for 12 months. This will build on the expertise of psychological therapists in the delivery of a new trans diagnostic cognitive behavioural therapy (tCBT)."


    Project

    http://www.health.org.uk/programmes...ically-unexplained-symptoms-through-screening

    Managing medically unexplained symptoms through screening, training and tailored psychological treatment

    Led by 2gether NHS Foundation Trust, in partnership with the University of Bath and NHS Gloucestershire Clinical Commissioning Group.

    To be implemented across 6–12 GP practices in Gloucestershire.

    "...This initiative will support GPs in detecting MUS and in providing evidence-based treatments for patients, in order to meet the needs of patients with MUS. The intervention uses a new cognitive behavioural therapy (CBT) approach, which has been shown to be effective for MUS."

    "A screening tool for routine GP use will be introduced to detect and facilitate early intervention for MUS patients, and a treatment protocol and manual will be developed. Primary care and IAPT (Improving Access to Psychological Therapies) staff will be trained to offer the MUS psychological intervention."

    "...It is anticipated that around 150–200 patients will receive the intervention during the course of the project.

    "The initiative aims to increase access to psychological care for MUS patients, improve their quality of life, reduce their psychological distress, and reduce unnecessary GP consultations and secondary care referrals."
     
    Last edited: Jan 16, 2017
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  9. Dx Revision Watch

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    In Cumbria:

    Leaflet: Information for professionals


    http://cdn.cumbriapartnership.nhs.u...-_info_for_health_professionals_V1_120116.pdf

    Persistent Physical Symptoms Service (PPSS)

    Chronic Pain, CFS, FND, MUS

    "Who is the Persistent Physical Symptoms Service (PPSS) for?

    The service offers evidence-based interventions to patients with persistent symptoms (of more than six months duration) rather than due to any underlying pathology.

    This includes


    • Chronic Pain

    • Chronic Fatigue Syndrome (CFS)/ Myalgic Encephalopathy (ME)

    • Functional Neurological Disorders (FND, including non-epileptic attack disorder)

    • Medically Unexplained Symptoms (MUS)"




    Leaflet:
    Information for patients:


    https://cdn.cumbriapartnership.nhs....oms_Service_-_info_for_patients_v1_120116.pdf


    See also:


    https://www.cumbriapartnership.nhs....services/persistent-physical-symptoms-service


    [​IMG]


    "We are a rehabilitation service designed to support people in understanding and managing their symptoms, with the aim of improving both their day to day activities of daily living as well as improving their mood.

    "The people we support may experience chronic (or persistent) pain or they may have been given a diagnosis such as Fibromyalgia, Chronic Fatigue Syndrome/ ME, Functional Neurological Symptoms (including Non-Epileptic Attacks) or Medically Unexplained Symptoms.

    "Our team provide a combination of physical and psychological interventions and includes clinical psychologists and practitioners, physiotherapists, CBT therapists, rehabilitation assistants and assistant psychologists.

    "Please note that this service is not currently available in South Cumbria. However, we do run a similar service in the south specifically aimed at people with a diagnosis of CFS/ME. Our South CFS/ME Service information leaflet provides more information on this service."



    See also:


    Kings Fund slide presentation

    https://www.kingsfund.org.uk/sites/files/kf/media/Elspeth_Desert.pdf

    Integration of Psychological and physical health care in Cumbria; across providers and conditions
    Elspeth Desert

    Consultant Clinical and Health Psychologist
    Clinical Director


    [​IMG]

    Slide #11

    "Evidence base for effective treatment is immense:

    • PACE trial for CFS – Graded exercise and CBT
    • NICE:
    ➢ME/CFS"


    Slide #12

    [​IMG]
     
    Last edited: Jan 16, 2017
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  10. Countrygirl

    Countrygirl ME is not MUS

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    I just want to publicly thank Suzy for her work. We are indeed very fortunate to have her here. Her razor-sharp brain is amazing, especially when compared to our befuddled cognitive remnants of intelligence, destroyed by the brutal effects of the disease that is ME.

    She has made some very valuable contributions to the thread 'I am gutted' which relates the consequences of the new NHS actions described in the documents above.

    Please do read her contributions here as it will shortly affect you.
     
  11. Dx Revision Watch

    Dx Revision Watch Dx Revision Watch no longer posts

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    A couple of forthcoming conferences:

    https://www.healthcareconferencesuk.co.uk/medically-unexplained-symptoms

    Medically Unexplained Symptoms /Somatic Symptom Disorder National Summit 2017
    Thursday 11 May 2017 The Studio, Birmingham

    Follow the conference on Twitter #medicallyunexplainedsymptoms

    A Joint Conference Healthcare Conferences UK & The Tavistock and Portman NHS Foundation Trust

    Researched and produced in partnership with The Tavistock and Portman NHS Foundation Trust, this important and timely conference will support delegates to better understand and meet the needs of people with medically unexplained symptoms/somatic symptom disorder. Through national updates, extended sessions and practical case studies the Summit will bring together leading practitioners in this area, and focus on developing a holistic integrated service, improving the management of people in primary care, evaluating the Stepped Care Model and Learning from the National Pathfinders, developing nurse led services, commissioning services and looking ahead to the future of care for people with medically unexplained symptoms.

    “A large number of people experience physical symptoms for which no clear biological cause can be identified. These symptoms are often chronic in nature (for example, persistent pain, tiredness or gastric symptoms); they can cause people significant distress, and often have an important psychological component. The terminology used to describe these symptoms is a subject of debate. However, the most widely used term is ‘medically unexplained symptoms’. Symptoms of this kind illustrate that in practice, it is often not possible or helpful to draw a distinction between ‘mental’ and ‘physical’ health. For these difficult-to-define problems, applying a clear diagnostic label (mental or physical) can be inappropriate, and a biopsychosocial approach towards management is particularly important. The concept of medically unexplained symptoms can also include people who have a physical condition but experience symptoms at a level that is disproportionate to the severity of that condition.*

    Medically unexplained symptoms are more common than is often recognised, and people experiencing them are typically referred for multiple investigations and assessments, at considerable expense to the system and with little or no benefit for the patient. The NHS in England is estimated to spend at least £3 billion each year attempting to diagnose and treat medically unexplained symptoms (Bermingham et al 2010). Much of this expenditure currently delivers limited value to patients; at worst, it can be counterproductive or even harmful.. Poor management of medically unexplained symptoms can have a profound effect on quality of life. People with such symptoms often experience high levels of psychological distress as well as co-morbid mental health problems, which can further exacerbate their medical symptoms (Henningsen et al 2003; Kroenke et al 1994). More than 40 per cent of outpatients with medically unexplained symptoms also have an anxiety or depressive disorder (Nimnuan et al 2001).

    Chronic pain can worsen depressive symptoms and is a risk factor for suicide in people who are depressed….Patients with medically unexplained symptoms account for an estimated 15 to 30 per cent of all primary care consultations (Kirmayer et al 2004) and GPs report that these can be among the most challenging consultations they provide. Medically unexplained symptoms also account for a significant proportion of outpatient appointments – in one study, accounting for more than 20 per cent of all outpatient activity among frequent attenders (Reid et al 2001). In primary care, some of the The case for change: 10 areas where integration is needed most biggest challenges are related to patients with a mixture of medically unexplained symptoms and poor adjustment to a long-term physical health condition, leading to disproportionate symptoms and medication use for the long-term condition. The annual health care costs of medically unexplained symptoms in England were estimated to be £3 billion in 2008/9, with total societal costs of around £18 billion (Bermingham et al 2010).” The Kings Fund 2016

    “People with medically unexplained symptoms, …and those with complex mental health problems frequently get ‘bounced’ around the NHS, passed from one service to another, none able (or willing) to offer them the flexible, personalised and sometimes time consuming support they require.” Managing Patients with Complex Needs, The Centre for Mental Health

    -------------------------

    *Note by Dx Revision Watch: The concept of "people who have a physical condition but experience symptoms at a level that is disproportionate to the severity of that condition" can be coded for under DSM-5's "Somatic symptom disorder" (a disorder term which is now also included within the US specific, ICD-10-CM, as an inclusion term under the existing F45.1 Undifferentiated somatoform disorder).

    The concept is also codeable as defined and characterized under proposals for ICD-11 core edition for "Bodily distress disorder" (BDD), which has "Somatic symptom disorder" listed under Synonyms to ICD-11's BDD (which is not the same construct or criteria as Fink's "BDS", despite proposing to use a similar term).

    NB: There is no "Somatic symptom disorder" term within the ICD-10 that is used in the UK and in many other countries. But the concept of "people who have a physical condition but experience symptoms at a level that is disproportionate to the severity of that condition" can be coded for under the existing (but historically little used) ICD-10 code F45.1 Undifferentiated somatoform disorder.

    ------------------------------

    https://www.eventbrite.co.uk/e/medically-unexplained-symptoms-conference-tickets-28393634124

    Another conference, this month:

    Friday 27th January 2017
    Cavendish Conference Centre, 22 Duchess Mews, London, W1G 9DT

    All professionals working in primary and secondary care and all Mental Health professionals


    Medically Unexplained Symptoms

    This exciting and innovative conference is designed to bring together experts from primary and secondary care, who will present practical and thought-provoking models of work in the field of Medically Unexplained Symptoms (MUS).
     
    Last edited: Jan 16, 2017
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  12. Dx Revision Watch

    Dx Revision Watch Dx Revision Watch no longer posts

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    Thank you, Countrygirl, for your very kind words.

    I hope this thread will alert UK patients and encourage them to post if they are finding the quality of their care or access to specialist referrals negatively impacted by the rolling out of integrated MUS/PPS services or by pilot MUS/PPS schemes.

    I have one more post to add later from the other thread.
     
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  13. Dx Revision Watch

    Dx Revision Watch Dx Revision Watch no longer posts

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    Via @postersandme



    Source:

    Mental Health Today
    News, 20th October 2016.

    https://www.mentalhealthtoday.co.uk...sical-health-conditions-to-be-rolled-out.aspx
     
    Last edited: Jan 11, 2017
  14. Countrygirl

    Countrygirl ME is not MUS

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    Seriously??!!!

    So, all you fruitloops with cardiovascular disease or diabetes................are to be thrown under the mental health bus.
     
  15. slysaint

    slysaint Senior Member

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    So against all the new research findings and decades of defining/redefining and diagnosing people with ME, the NHS have now unilaterally redefined ME/CFS as a mental illness.

    @charles shepherd are NICE aware of these changes/developments?
     
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  16. sarah darwins

    sarah darwins I told you I was ill

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    What's happening in the UK is all enough to turn anyone into a conspiracy theorist. We've got hospitals in crisis, with A&E units overwhelmed by patients who can't get a GP's appointment for a month, bed-blocking on an epic scale. Meanwhile the government is ploughing ever more into CBT-focussed services and incorporating utterly bogus concepts like MUS into frontline healthcare.

    There's a renegade GP who blogs somewhere who always refers to CBT as "a cognitive lobotomy". This does all feel like a Dr Evil plan to withdraw medical services and replace them with brainwashing for the masses.
     
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  17. Countrygirl

    Countrygirl ME is not MUS

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    I suspect they will argue that they are not actually claiming it is a mental illness. However, the call I received from my GP just before Christmas...................a GP who had always accepted ME as a physical illness..................made it very clear that it was now to be viewed as a mental health condition. To view it as a physical illness, was, the doctor claimed, just a patient's opinion, and one with which she disagreed.
     
  18. Sean

    Sean Senior Member

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    Heads they win.
    Tails we lose.

    ----------

    Another very grateful thanks to Suzy for her amazing effort on this stuff, over many years. It is exactly the kind of detailed record that will help stop this insanity, and hold the perpetrators accountable.
     
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  19. sarah darwins

    sarah darwins I told you I was ill

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    About a year ago quite a few people here were predicting that MUS would be how the psych lobby's fake scientists would slip their ideas in public policy. Seems to be working nicely for them. It has the added advantage of not relating to any one specific illness. Kind of a catch-all way to offload people into psych services. Plenty of unemployed psychology grads around ... not enough actual doctors.
     
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  20. Countrygirl

    Countrygirl ME is not MUS

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    My shameful confession is that I am one. The ONLY good thing to result from ME, is that it prevented me from gaining a PhD in psychology and pursuing a career as a psychologist.

    The utter shame of my previous false beliefs in psychology.

    Hangs head in shame! I was young though........................
     

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