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ME/CFS services in the United Kingdom

Discussion in 'UK clinics and doctors' started by Hutan, Nov 2, 2017.

  1. livinglighter

    livinglighter Senior Member (Voting Rights)

    Messages:
    599
    Ash, Fainbrog, bobbler and 2 others like this.
  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,448
    Location:
    London, UK
    Yes, at least officially. NICE is the gold standard in practical terms in this respect. But if health care workers are not up to speed on details they may misapply the terms and they may misapply them differently.
     
    Ash, MEMarge, Starlight and 12 others like this.
  3. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,844
    Location:
    Aotearoa New Zealand
    I also note "Long covid syndrome" on that list - which is a bit problematic, as Long covid syndrome could be all sorts of things, including ME/CFS.
     
    Ash, MEMarge, livinglighter and 7 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,257
    Location:
    UK West Midlands
    Based on this they seem pretty clueless
     
  5. wastwater

    wastwater Senior Member (Voting Rights)

    Messages:
    347
    Sentinel cfs in Plymouth what’s that like
    I’m not even really asking I can see what it’s like,wonderful
    Any better in Exeter
     
    Peter Trewhitt likes this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    52,218
    Location:
    UK
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,582
    Location:
    UK
    Leicester Council report on Mental Health provision;
    of interest
    "
    The Mental Health Liaison Service
    (MHLS)
    provides services to adults within LLR
    aged 16 to 65 years. People are seen on inpatient wards at all UHL hospital sites
    -
    Leicester General Hospital, Leicester Royal Infirmary and Glenfield Hospital. The service
    provides outpatient clinics and a specialist Chronic Fatigue Syndrome (CFS) service. Care
    is provided by experienced multidisciplinary-team liaison professionals."

    https://cabinet.leicester.gov.uk/documents/s148742/2023 November Scrutiny report v3.pdf

    again, why is the CFS service included under mental health provision?
     
    MEMarge, Sean, bobbler and 6 others like this.
  8. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,337

    SNOMED CT UK Edition is the mandatory terminology system for use at the point of care in both NHS primary and secondary care.

    The "Preferred Term" in SNOMED CT is Concept: SCTID: 52702003 | Chronic fatigue syndrome (disorder).

    https://termbrowser.nhs.uk/?perspec...gRefset=999001261000000100,999000691000001104

    The following terms are listed under Synonyms which are all designated as "Acceptable" terms in the "National Health Service realm language reference set (clinical part)" and are all coded to SCTID: 52702003.

    Iceland disease
    Benign myalgic encephalomyelitis
    Chronic fatigue syndrome
    Myalgic encephalomyelitis syndrome
    ME - Myalgic encephalomyelitis
    Myalgic encephalomyelitis
    CFS - Chronic fatigue syndrome
    Chronic fatigue syndrome (disorder)
    Myalgic encephalitis
    Myalgic encephalopathy


    Additionally, there are three uniquely coded-for severity specifiers under "Children" terms to SCTID: 52702003 which are specific to the UK Edition:


    Mild chronic fatigue syndrome (disorder) (SCTID: 377181000000104)
    Moderate chronic fatigue syndrome (disorder) (SCTID: 377171000000101)
    Severe chronic fatigue syndrome (disorder) (SCTID: 377161000000108)
     
    Last edited: Nov 30, 2023
  9. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

    Messages:
    3,337
    My son was diagnosed, initially, with "postviral syndrome" by an NHS clinician, 24 years ago. Some months later he was assigned the diagnosis of "ME/Chronic fatigue syndrome" by an NHS paediatrician.

    On blood test order forms, his GP still puts down "Chronic fatigue" along with whatever additional current symptoms he may have.
     
  10. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,318
    Copied post

    The purpose of a study, could it be to keep the method and infrastructure intact.
    From Sarah Boothby on X
    New paediatric pathway guidance published where are the new NICE guidelines
    The king is dead long live the king


     
    Last edited by a moderator: Jan 12, 2024
  11. Suffolkres

    Suffolkres Senior Member (Voting Rights)

    Messages:
    1,522
    https://www.theguardian.com/lifeand...specialist-vincent-deary-on-coping-with-life?

    'Psychologist, author and fatigue expert Vincent Deary....
    'It’s racing now as we sit together in a London hotel. We’re here to discuss his new book, How We Break: Navigating the Wear and Tear of Living, an exploration of our varying responses to the corrosive pressures of daily life, especially work, and an assertion of the vital necessity of rest, recovery and the lost art of convalescence. The book is the second in a trilogy by Deary, a professor of psychology at Northumbria University and a clinical fatigue specialist at the Cresta Fatigue Clinic, a role from which he has just retired. The NHS clinic, which is closing later this year, is unique in the UK for taking a multi-disciplinary approach to disabling fatigue.'
    DUM, Dum Du.... anotherone bites the dust.....?!
     

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