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(NLP) "Feasibility study for a community based intervention for individuals with severe CFS/ME" (UK)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Aug 25, 2014.

  1. Dolphin

    Dolphin Senior Member

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    (Not the sort of research that excites me)

    Source: Association for Neuro Linguistic Programming (ANLP)
    Date: August 15, 2014
    Author: Rabiya Patel
    URL: http://www.anlp.org/files/2014-abstract-summary_11_378.pdf

    Ref: International NLP Research Conference
    http://www.nlpconference.co.uk http://www.anlp.org/the-international-nlp-research-conference

    The International NLP Research Conference -----------------------------------------
    21-23 November 2014 Holiday Inn London Bloomsbury Coram Street London WC1N 1HT

    - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
    [Abstracts: Session 1 - Coaching/Therapy]

    Feasibility study for a community based intervention for individuals with severe CFS/ME
    ----------------------------------------------------------
    Clare McDermott(*), Sarah Frossell, Dr Selwyn Richards, Prof George Lewith, Prof Paul Little, Prof Diane Cox, Dr Geraldine Leydon, Dr Caroline Eyles. * Corresponding author: Clare McDermott, Primary Medical Care, Aldermoor Health Centre, Aldermoor Close, University of Southampton, SO16 5ST. c.mcdermott@soton.ac.uk

    Background

    Chronic Fatigue Syndrome/ME (CFS/ME) is characterised by debilitating fatigue, pain and other symptoms. Severe CFS/ME can lead to patients becoming housebound or bedbound.1 There is little published research on this patient group.

    Method

    Design Feasibility and acceptability study of a community based intervention for adults with severe CFS/ME, with qualitative and quantitative evaluation. Design based on the Medical Research Council Guidelines for evaluating complex interventions.2 Setting: Domiciliary care delivered by multi-disciplinary teams based at specialist NHS CFS/ME services.

    Participants

    20 patients diagnosed with CFS/ME [Centers for Disease Control (1994) criteria]3, who are severely affected [Cox & Findley (1998) criteria].4

    Intervention

    Recovery strategies based on the Neuro-Linguistic Programming concept of 'modelling success', adapted for use in severe CFS/ME through in-depth Patient and Public Involvement development work conducted over two years. The intervention includes a range of NLP techniques, delivered through audio recordings, direct therapist contact and social contact via peer recovery support group. One year active intervention + one year support and follow-up.

    Primary measure

    Clinical Global Impression of Change

    Secondary outcome measures include

    - Electronic activity and sleep measurement - Patient reported outcome measures on fatigue, pain, physical function, anxiety, depression, self efficacy and quality of life. - Therapist completed outcome measures on physical function.

    Results

    This study is currently recruiting patients in Dorset and Oxford. Results will be available in 2016. The study is funded by the National Institute of Health Research (NIHR) and has been peer reviewed by the National School of Primary Care Research.

    (1) National Institute for Heath and Clinical Excellence (NICE). Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy): diagnosis and management of CFS/ME in adults and children. NICE clinical guideline 53. 2007. London, National Collaborating Centre for Primary Care.

    (2) Medical Research Council. Developing and evaluating complex interventions: new guidance. 2008.

    (3) Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994; 121(12):953-959.

    (4) Cox D, Findley LJ. The management of chronic fatigue syndrome in an inpatient setting: presentation of an approach and perceived outcome. British Journal of Occupational Therapy 1998; 61 (9):405-409. (3) MRC guidelines.
     
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  2. Dolphin

    Dolphin Senior Member

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    This has several of the same people who wrote this recent review:

     
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  3. A.B.

    A.B. Senior Member

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    More modern faith healing for ME/CFS.
     
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  4. Leopardtail

    Leopardtail Senior Member

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    I can't sat the "Association of Neuro-linguistic Programming" inspires any confidence. Only three severley affected? That's a statistical nonsense.
     
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  5. Esther12

    Esther12 Senior Member

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    Wow. Things are actually getting worse.

    We've moved from CBT/GET research to NLP and the Lightning Process!
     
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  6. daisybell

    daisybell Senior Member

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    I feel better already knowing that the NIHR is funding this.... :bang-head:
     
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  7. Sean

    Sean Senior Member

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    Zombie science at its finest.
     
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  8. alex3619

    alex3619 Senior Member

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    3 is the reference, its 20 patients, but I still think this can not be considered more than a pilot study.

    NLP does not inspire confidence. Its still magic if they are looking for a cure, but it might be applicable if its designed solely for day to day management. Sadly I think it wont be.

    Yes, this is most probably Zombie Science, I doubt it has any real merit except that people want to make money off it.

    I want more details on the "objective" subjective outcome measures. Babble relies heavily on subjective outcomes, in patients who are brainwashed into giving nice answers. We need hard evidence.
     
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  9. PNR2008

    PNR2008 Senior Member

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    No matter how much they waterboard or tickle me---I DO NOT GIVE NICE ANSWERS.
     
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  10. alex3619

    alex3619 Senior Member

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    Babble has an answer for everything, its part of why its babble. In their view this confirms you are denying treatment, its part of your pathology. No matter the answer, no matter the evidence or reason, they have a reply that makes it your fault. Babble, can't agree with them, not allowed to disagree with them.
     
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  11. PNR2008

    PNR2008 Senior Member

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    Maybe we should round them up, take them to Alcatraz and see if they kill each other off.
     
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  12. A.B.

    A.B. Senior Member

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    Give them no food and tell them hunger is only a matter of perspective and attitude. And when they react, tell them their reaction is proof of poor attitude.
     
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  13. Snow Leopard

    Snow Leopard Hibernating

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    Ugh.

    That's all I'm going to say.
     
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  14. alex3619

    alex3619 Senior Member

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  15. Leopardtail

    Leopardtail Senior Member

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    Now I have realised that's a formatting thing, at least they are severely affected patients. Still disappointing the these forms of therapy get too much funding though.
     
  16. Leopardtail

    Leopardtail Senior Member

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    Laughed myself breathless when I read this, first class flippancy.
     
  17. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Clare McDermott, PhD, was lead on this recent paper:

    http://bmjopen.bmj.com/content/4/6/e005083.full?sid=643d58c3-f6ee-470e-a7d2-8ed30dee6ffa

    Health services research

    What is the current NHS service provision for patients severely affected by chronic fatigue syndrome/myalgic encephalomyelitis? A national scoping exercise

    Clare McDermott, Atheer Al Haddabi, Hiroko Akagi, Michelle Selby, Diane Cox, George Lewith

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

    Clare McDermott is Research Co-ordinator for Emotional Processing R & D, Dorset:

    http://www.emotionalprocessing.org/Physical health/EP & Physical Health/chronic fatigue syndrome.html

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

    Michelle Selby is Head OT/Network Co-ordinator and contact for Dorset CFS/ME Services and also Chairs the British Association for CFS/ME.

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

    The co-authors of the NLP concepts for severe ME patients paper that is the subject of this thread are:

    Clare McDermott(*), Sarah Frossell, Dr Selwyn Richards, Prof George Lewith, Prof Paul Little, Prof Diane Cox, Dr Geraldine Leydon, Dr Caroline Eyles.

    Dr Selwyn Richards is lead consultant, Dorset CFS Service.

    Prof Paul Little is a member of the UK CMRC Collaborative.

    Prof Paul Little is a co-researcher in this new £1,232,554 award for Southampton.

    H Everitt (PI); R Moss-Morris, T Chalder, P McCrone, P Little, S Landau, F Bishop, R Logan, N Coleman “Assessing

    Cognitive Therapy in Irritable Bowel (ACTIB)” NIHR HTA.

    Prof Paul Little

    "Professor Little was the first GP to be awarded a Wellcome HSR training fellowship (for research on health promotion), and the first to be awarded an MRC Clinician Scientist Fellowship (for research on common self-limiting illness), and in addition current major areas of research are in enabling behaviour change both for health professionals and also in empowering patients."

    Prof Little is also involved in this study:

    FAME Pilot

    http://www.spcr.nihr.ac.uk/research/fame-pilot

    Fatigue: acute fatigue assessment and management in everyday

    Paul Little, University of Southampton

    This research aims in the proposed future NIHR Programme grant to help patients manage short-term (acute) fatigue – one of the most intrusive but often hidden symptoms – and to better understand and predict which patients with acute fatigue go on to develop Chronic Fatigue (lasting 6 months or more) or Chronic Fatigue Syndrome/ myalgic encephalomyelitis (CFS/ME). We will also explore whether a web based intervention can help both acute fatigue and also prevent progression to chronic fatigue etc.

    FAME "is a feasibility study aimed at informing a larger programme of research concerned with helping patients to manage short-term fatigue and to better understand and predict which patients with acute fatigue will go on to develop Chronic Fatigue syndrome /Myalgic Encephalomyelitis (CFS/ME).
    It is funded by the NIHR School for Primary Care Research."

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

    Clare McDermott and George Lewith (CAM)* are speakers at the November 14, 2014 AfME Severe ME Symposium and AGM.

    * He is currently interested in Pain, Arthritis and Cancer as illness models investigating the effects of acupuncture, healing, homeopathy and herbal medicines.

    Prof Hugh Perry (UK CMRC Collaborative) is also a speaker at the AfME event:

    http://www.eventzilla.net/web/event?eventid=2139058906
     
    Last edited: Sep 6, 2014
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  18. Dolphin

    Dolphin Senior Member

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    Where does it say it is funded by the NIHR School for Primary Care Research? From what I can see on the link, it looks like it could equally be read as the wording on a grant application.
     
  19. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Sorry, Dolphin, I'd inadvertently omitted the source for this quote:

    [FAME] "is a feasibility study aimed at informing a larger programme of research concerned with helping patients to manage short-term fatigue and to better understand and predict which patients with acute fatigue will go on to develop Chronic Fatigue syndrome /Myalgic Encephalomyelitis (CFS/ME).
    It is funded by the NIHR School for Primary Care Research."


    It comes from this (now closed) recruitment ad for a Trial Coordinator for the FAME study

    https://www.jobs.soton.ac.uk/Vacancy.aspx?ref=402514F5

    [...]

    "You will be responsible for coordinating the FAME study, which is a feasibility study aimed at informing a larger programme of research concerned with helping patients to manage short-term fatigue and to better understand and predict which patients with acute fatigue will go on to develop Chronic Fatigue syndrome /Myalgic Encephalomyelitis (CFS/ME). It is funded by the NIHR School for Primary Care Research."

    On 6 August 2014, this document was updated and includes the name of a staff member for the FAME study:

    http://www.southampton.ac.uk/assets/imported/transforms/site/research-group/UsefulDownloads_Download/3213CAD0AADB4013AAAE1E3A7E575EFF/PCPS staff list as at 6 August 2014.pdf

    Fatigue: Acute fatigue assessment and management in everyday practice (FAME).
     
    Last edited: Sep 11, 2014
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  20. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    http://www.southampton.ac.uk/assets...140A973E772D435/LifeGuide showcase_all-AG.pdf

    Slide Presentation:

    Showcasing LifeGuide: software that allows YOU to create internet-delivered interventions

    Slide #9. #10 : ACTIB: Assessing Cognitive behavioural Therapy in Irritable Bowel
    Hazel Everitt1, Rona Moss-Morris2, Trudie Chalder2, Paul McCrone3, Sabine Landau3, Flis Bishop4, Robert Logan5, Nicholas Coleman6, Paul Little1
    Funding: £1,232,554
    Funder: NIHR

    Aim:
    To determine the clinical and cost effectiveness of therapist delivered cognitive behavioural therapy and web-based CBT self management in irritable bowel syndrome.

    3 arms in the trial:
    1. 8 one hour telephone CBT sessions + Paper manual
    2. 8 on-line modules + 5 thirty minute telephone CBT sessions
    3. Treatment as Usual

    • Recruitment target: 495 from Southampton and London
    • Clinical effectiveness will be assessed by examining the difference between arms in the IBS Symptom Severity Score and Work and Social Adjustment Scale
    • ACTIB will go live in Spring 2014
     

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