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NICE announces its next steps in updating its ME guidelines

Discussion in 'General ME/CFS News' started by Countrygirl, Feb 16, 2018.

  1. Countrygirl

    Countrygirl Senior Member


    15 February 2018

    NICE announces next steps in updating its guideline on ME/CFS
    A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

    The workshop was held so that stakeholders, including patient groups for people with ME/CFS and their carers, could help NICE identify at an early stage the issues they consider most important for the development of the new guideline.


    Over 45 people attended the workshop, representing 37 different organisations supporting people with ME/CFS.

    NICE has also confirmed the next steps in the development of the new guideline, starting with a further workshop with stakeholder organisations on 25 May to discuss the scope of the guideline. Stakeholders will then have the opportunity to comment on the draft scope between 21 June and 19 July. This will coincide with recruitment to the independent guideline committee, which will also begin on 21 June with adverts posted on the NICE website.

    Professor Mark Baker, director of the NICE centre for guidelines, said: “We wanted to get the views and insights of as many people as possible who are affected, either directly or indirectly, by ME/CFS to make sure we understand the issues that are important to them.

    “The clear message from the workshop was the need to ensure the new guideline properly addresses and resolves the continuing debate about the best approach to treating people with this condition. It also confirmed our intention to ensure robust representation of people with ME/CFS, or their carers, on the independent committee that will develop the guideline.

    “Therefore, following the scoping workshop we’re holding in May, we will recruit a guideline committee which will include 4 people with the condition or their carers, rather than the usual 2. Additionally, we will include a lay member on the recruitment panel for the chair of the guideline committee.”

    Once recruited, the committee will review a wide range of evidence and develop recommendations, based on the agreed scope of the guideline.

    ME/CFS is a relatively common condition affecting around 190,000 people in the UK. It comprises a range of symptoms that includes fatigue, headaches, sleep disturbances, difficulty concentrating and muscle pain.

    It can cause prolonged illness and disability and although some people have relatively mild symptoms and can still manage daily activities with additional rest, others have a more serious form of the illness that severely affects their everyday lives and can leave them housebound. The pattern of a person’s symptoms, and their severity, can vary from day to day, or even in the same day.

    Further details about the development of the new NICE ME/CFS guideline, including the timeline and information about how to get involved, either by sharing your views and experiences of ME/CFS, or by becoming a member of the guideline committee, are available on the NICE website or by emailing

    Our public involvement team is also on hand to advise members of the public and patient groups who wish to be involved in this work.
  2. andyguitar

    andyguitar Senior Member

    South east England
    So is anyone here going to apply to join the Guideline Committee? As far as i know you have to attend meetings about once a month and get paid + travel expences. Who would be a good representative?
  3. shannah

    shannah Senior Member

    I'm not familiar with this group, so someone please correct me if I'm wrong.
    The impression I get by reading this article is that they're eager 'to get it right'.
    adambeyoncelowe and andyguitar like this.
  4. andyguitar

    andyguitar Senior Member

    South east England
    This group (NICE) @shannah, is the body that advises the UK Gov on the best way for our Docs to deal with different illnesses. NICE issue guidelines to the medical profession who are expected to follow them. Could be anything from what drugs should be used to how a diagnosis should be made. Yes they do want to "get it right" but what "right" is depends on your point of view.
    shannah likes this.
  5. shannah

    shannah Senior Member


    Thanks @andyguitar

    I've done a little more reading. I see it all sounded so promising but reality is often a different story.
    andyguitar likes this.
  6. andyguitar

    andyguitar Senior Member

    South east England
    One thing is certain. There is going to be an almighty row about this illness and how people have been treated for all these years.
    ballard and WillowTree like this.
  7. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    I wrote an email sharing the kind of diagnosis and care I'm getting here in the US and contrasted it with CBT/GET.

    Maybe others could do the same. If they see there are other valid medical options that help patients improve, perhaps CBT/GET won't seem like the only medical treatment.
  8. Learner1

    Learner1 Forum Support Assistant

    Pacific Northwest
    Got an email back:
    The registered stakeholder list is:

    25% M.E. Group
    Action Against Allergy
    Action for ME
    Action Heart
    Alder Hey Children's NHS Foundation Trust
    Aquatic Therapy Association of Chartered Physiotherapists
    Assocation of NHS Occupational Physicians
    Association for Cognitive Analytic Therapy
    Association for Family Therapy and Systemic Practice in the UK
    Association for Psychoanalytic Psychotherapy in the NHS
    Association of Anaesthetists of Great Britain and Ireland
    Association of British Neurologists
    Association of National Health Occupational Physicians
    Association of Paediatric Chartered Physiotherapists
    Belfast Health and Social Care Trust
    Body Beautiful
    Bristol and Avon Chinese Women's Group
    British Association for CFS/ME
    British Association for Community Child Health
    British Association for Counselling and Psychotherapy
    British Association of Dramatherapists
    British Association of Prosthetists & Orthotists
    British Association of Sports Rehabilitators and Trainers
    British Infection Association
    British Liver Trust
    British Medical Association
    British Medical Journal
    British Nuclear Cardiology Society
    British Nuclear Medicine Society
    British Paediatric Mental Health Group
    British Pain Society
    British Psychological Society
    British Society for Paediatric and Adolescent Rheumatology
    Buckinghamshire Healthcare NHS Trust
    Cambridge University Hospitals NHS Foundation Trust
    Care Quality Commission
    Care Right Now
    Carers Matter Norfolk
    CFS/ME Clinical Network Coordinating Centre
    CFS/ME Service for South Yorkshire and North Derbyshire
    Chartered Society of Physiotherapy
    Chronic Fatigue Research Unit at King's College London
    Cochrane Depression Anxiety and Neurosis Group
    College of Mental Health Pharmacy
    College of Paramedics
    Counselling and Psychotherapy Trust
    CWHHE Collaborative CCGs
    Department of Health
    Department of Health, Social Services and Public Safety - Northern Ireland
    DO NOT USE - NHS Direct
    DO NOT USE Health Protection Agency
    Doctors Support Network
    East and North Hertfordshire NHS Trust
    Eli Lilly and Company
    Essex Centre for Neurological Sciences
    Faculty of Pain Medicine of the Royal College of Anaesthetists
    False Allegations Support Organisation
    Family Nutrition Coach Ltd
    Ferring Pharmaceuticals
    Forward - ME
    GP update / Red Whale
    Great Western Hospitals NHS Foundation Trust
    Greater Manchester West Mental Health NHS Foundation Trust
    Health and Care Professions Council
    Health and Social Care Board NI
    Healthcare Improvement Scotland
    Healthcare Quality Improvement Partnership
    Healthwatch Bolton
    Hertfordshire Partnership NHS Trust
    Hertfordshire Partnership University NHS Foundation Trust
    Hindu Council UK
    Hope 4 ME & Fibro Northern Ireland
    Human Givens Institute
    Invest in ME
    Isle of Wight Council
    Kent and Medway NHS and Social Care Partnership Trust
    King's College Hospital - Weston Education Centre
    Lancashire Care NHS Foundation Trust
    London North West Healthcare NHS Trust
    London School of Hygiene and Tropical Medicine
    Lyme Disease Action
    LymeAid UK
    M.E Support Northern Ireland
    Maidstone and Tunbridge Wells NHS Trust
    Manchester Mental Health & Social Care Trust
    Mast Cell Action
    ME Action Network
    ME Research UK
    Medicine Gov
    Medicines and Healthcare Products Regulatory Agency
    MESIG Wales
    Ministry of Defence
    Moving Minds Ltd
    National Guideline Alliance
    National Guideline Centre
    National Institute for Health Research
    National Patient Safety Agency
    National Tremor Foundation
    NEMS Community Benefit Services Ltd
    NHS Choices
    NHS Digital
    NHS England
    NHS Hardwick CCG
    NHS Health at Work
    NHS Kernow CCG
    NHS Oxfordshire CCG
    NHS Plus
    NHS Sheffield CCG
    NHS Somerset CCG
    NICE GP Reference panel
    Niger Delta University
    Norgine Pharmaceuticals Ltd
    Northumberland, Tyne & Wear NHS Trust
    Nottingham City Council
    Nottinghamshire Healthcare NHS Foundation Trust
    Nutrition Society
    One Click Group
    Paediatric Mental Health Association
    Pain Concern
    Partnerships for Children, Families, Women and Maternity
    Pelvic Pain Support Network
    PERIGON Healthcare Ltd
    Pernicious Anaemia Society
    Pituitary Foundation
    PoTS UK
    Pottergate Centre for Dissociation & Trauma
    PrescQIPP NHS Programme
    Primary Care Pharmacists Association
    Primary Care Rheumatology Society
    PRIME Project
    Public Health England
    Public Health Wales
    Quality Institute for Self Management Education and Training
    Queen Elizabeth Hospital
    reMEmber - The Chronic Fatigue Society
    Royal College of General Practitioners
    Royal College of Nursing
    Royal College of Obstetricians and Gynaecologists
    Royal College of Occupational Therapists
    Royal College of Paediatrics and Child Health
    Royal College of Pathologists
    Royal College of Physicians
    Royal College of Psychiatrists
    Royal College of Psychiatrists in Wales
    Royal College of Radiologists
    Royal College of Surgeons of England
    Royal Cornwall Hospitals NHS Trust
    Royal Free London NHS Foundation Trust
    Royal Liverpool University Hospital
    Royal Pharmaceutical Society
    Royal Society of Medicine
    Salford Royal
    Salford Royal NHS Foundation Trust
    Science for ME
    Scottish Intercollegiate Guidelines Network
    Sensory Integration Network
    Skills for Care
    Sky Medical Technology Ltd
    Social Care Institute for Excellence
    Society for Academic Primary Care
    Society for Endocrinology
    Society of Homeopaths
    Solent NHS Trust
    Somerset Foundation NHS Trust
    South Asian Health Foundation
    Southampton City Council
    Stockport NHS Foundation Trust
    Support for ME
    The Hepatitis C Trust
    The M.E. Trust
    The ME Association
    The ME Association
    The National ME Centre
    The Princess Alexandra Hospital NHS Trust
    The Young ME Sufferers Trust
    Thought Field Therapy Foundation UK Ltd
    UK Primary Immune-Deficiency Patient Support
    United Lincolnshire Hospitals NHS
    University College London Hospital NHS Foundation Trust
    University Hospital Birmingham NHS Foundation Trust
    University of Manchester
    Urgo Medical Ltd
    Welsh Association of ME & CFS Support -
    Welsh Government
    Welsh Health Specialised Services Committee
    Welsh Scientific Advisory Committee
    Wessex Neurological Centre
    West London Mental Health NHS Trust
    shannah likes this.
  9. anni66

    anni66 mum to ME daughter

  10. lnester7

    lnester7 Seven

    This is important world wide, so whomever can go to support please go in all of our names.
    Also, would be nice if recognized international doctors can go. Not sure if this is the hearing.
    adambeyoncelowe likes this.

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