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BACME 2012 Conference Agenda

Discussion in 'General ME/CFS News' started by oceanblue, Mar 7, 2012.

  1. oceanblue

    oceanblue Senior Member

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    Milton Keynes Wednesday 14th-Thursday 15th March 2012

    Wednesday 14th March


    10.30-11.15
    Dr John Macbeth Honorary Reader University of Manchester;
    The Epidemiology of Pain/Fatigue Disorders: examining co-occurrence and common associated factors

    11.15-12.15
    Keynote Speaker: Professor Peter White St Bartholomews Hospital London: Pace - in Practice


    1.45-2.30
    Dr Esther Crawley: Centre for Child and Adolescent Health, Bristol;
    'What's new in CFS/M.E. for Children and Young People?' (update on Paediatric Research)

    2.30-3.15
    Dr David Vickers Medical Director and Consultant Paediatrician Cambridge Community Services NHS Trust;
    Symptom Management in Children and Young People

    3.45-4.30
    Sue Pemberton Consultant Occupational Therapist, Leeds;
    Distortions of Time: an alternative view of the concept of Pacing in CFS/ME

    4.30-5.15
    Paul McCrone Professor of Health Economics, Kings College London;
    Treatments for CFS/ME; are they value for money?


    Thursday 15th March
    Morning: Choice of 2 workshops from:

    WORKSHOPS

    1. What makes a Service Young People Friendly? -
    Facilitated by: Anna Gregorowski (Nurse Consultant, GOSH)

    2. Issues and Difficulties on Diagnosis and Management of ME/CFS
    in Very Young Children Dr Esther Crawley (Bath RNHRD CFS/ME Service)

    3. Socialisation to the Model Dr Jo Daniels

    4. Providing an inpatient service for those severely affected with CFS/ME.
    Paul McCrone Professor of Health Economics and Director of the centre for the Economics of Mental health, Leeds.

    5. Liaison with Education- working together Janey Readman Team Leader
    Children's Community Nursing for CFS/ME, Transitions & Special Needs School Nurse.

    6. What is the essence of effective therapy? A patient perspective.
    Facilitated by Carol Wilson Specialist OT/Psychotherapist

    7. C.B.T Dr Mary Burgess is a Cognitive Behaviour Psychotherapist who has worked for the Chronic Fatigue Syndrome Research & Treatment Unit in London for several years. She was therapy lead for the PACE trial and developed and wrote the treatment manuals for the trial.

    8. Activity Management; The use of evidence in practise; the difference between practise and research.
    What is the evidence for using this approach and how are clinicians using current scientific evidence within day to day practice?
    Dr Diane L Cox reader in Occupational Therapy and Fiona Wright Specialist Occupational Therapist Frenchay CFS/ME Service Bristol

    3.00-3.45
    Trudie Chalder ; Fatigue in Women

    3.45 - 4.00 Closing speaker TBC: Topic MRC new research funded

    4.00-5.00
    BACME AGM Chairperson Michelle Selby, Head OT/Network Co-ord Dorset CFS/ME service; (for existing and new members)

    I've highlighted the sessions that I personally would most like to hear.
     
  2. Enid

    Enid Senior Member

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    oceanblue - one can only hope this may lead to greater understanding of the pathologies found in ME - sorry to doubt a psychiatric nurse - what more can you say.
     
  3. Valentijn

    Valentijn Activity Level: 3

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    Is picketing ME/CFS psych love-ins like this one an option?
     
    Kati likes this.
  4. merylg

    merylg Senior Member

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  5. Valentijn

    Valentijn Activity Level: 3

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    Inpatient would be the opposite of home visits - being admitted (or committed) to an institution. One with a mental health bent, in the psychs' dreams, and probably not a facility offering bed rest, antivirals, and B12.

    Though it could be fun seeing them try CBT/GET on bedbound patients.
     
    merylg likes this.
  6. merylg

    merylg Senior Member

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    Yes, typically it turns out to be an "Inpatient DIS-Service" :worried:
     
  7. oceanblue

    oceanblue Senior Member

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    After an enormous battle for funding with Oxford Health authority, which is about as hardline on CBT as you can get in the UK, I spent a month at Romford Oldchurch hospital and it was immensely helpful. No cure though.
     
  8. Astrocyte

    Astrocyte

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    Equally, I'm close to completing integrated psychological therapy at Barts and have found it very helpful. The BACME workshop:
    "8. Activity Management; The use of evidence in practise; the difference between practise and research. " seems to express my experience.

    My therapy was nothing like the PACE manual but has certainly helped me cope. It was very practical but most importantly encouraged me to develop a loving intelligence toward myself, to look after myself in a wise and kind way.

    I get a bit sick of the myths that are propagated about what is going on in the clinics by people who haven't attended them at all or recently.
     
  9. SOC

    SOC Senior Member

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    I'm curious -- In what way did you find it very helpful? What was the practical part? Did you learn pacing? Did they teach you some markers or measures (BP, heartrate, etc) to use to determine the right amount of activity for you?

    I don't understand "encouraged me to develop a loving intelligence toward myself, to look after myself in a wise and kind way" which sounds like fluff-speak, but is probably just the current buzz phrases for long-established counseling strategies. Can you give some examples for the more literal-minded among us? How has it changed your life with ME? Are they teaching acceptance-with-hope or other techniques used with patients with chronic illness?

    If other ME patients chose to go to Barts for integrated psychological therapy, how could they expect their lives to be improved? Did you get any symptom relief -- better sleep, less pain, better function, more energy, fewer or shorter infections, better cognitive function, reduction in NMH or OI symptoms?

    It is certainly good news if Barts is using real CBT (as opposed to the false illness belief garbage) to help ME patients develop coping skills for functioning with a devastating physical illness. I hope they are also giving, in addition to psychological therapy, some amount of medical treatment for the symptoms that can often be moderated with medical attention.
     
    Enid likes this.
  10. Esther12

    Esther12 Senior Member

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    If the treatment being provided is nothing like that laid out in the manuals, it seems rather silly to blame critics for that. But then, the efficacy of these treatments is nothing like it's proponents claims either, so maybe it's foolish to assume truth or honesty have anything to do with these CFS researchers.

    They're probably more interested in developing a loving intelligence towards themselves, and looking after themselves in a wise and kind way than in coming to terms with their own failings, and making the apologies that would then be required to those patients they have let down and misled.

    I think that patients would find it much easier to maintain healthy psychological responses to their illness were they not operating in the social settings which had resulted from the inaccurate claims of psychosocial researchers about the role of i) depression ii) deconditioning and iii) a fear anxiety response to activity in causing disability in CFS.

    Also, seeing as there's never been a period of accountability, I think that the experiences of patients who were mistreated 20 years ago are still of relevance to understanding medical responses to CFS. Until there's some attempts to acknowledge and make amends for the problems of the past, I do not think that they should just be forgotten.
     
    Enid likes this.
  11. Enid

    Enid Senior Member

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    Quite agree with all your points SOC and Esther.
     
  12. Astrocyte

    Astrocyte

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    SOC I answered your questions more fully in this thread
    http://forums.phoenixrising.me/showthread.php?16830-Bart-s-Therapy-CBT-but-not-as-we-know-it&


    My fluff-speak (love that term! :D) not theirs.

    Medical attention (from the medic). A few years ago I was advised to drink 2 litres of water and increase salt which helped the faint-feeling related to POTS and general gormlessness. I've had a 24 hr BP/Hr monitor and was referred by Barts to see a rheumatologist who diagnosed Ehlers Danlos hypermobility type, along with physio.
    There would be medication for sleep, mood, pain if I needed it/wanted it. The dr also encouraged me to continue with gentle Alexander Technique (as I had had three or four private lessons) but only if I could afford it. Sadly, I can't.
     
  13. SOC

    SOC Senior Member

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    Thanks for your complete response on the other thread. It sounds like Bart's might be getting on board with some workable treatments, although nothing very forward-thinking.

    Are you thinking you have Ehlers Danlos plus ME? I've been wondering recently if my daughter has Ehlers Danlos on top of ME.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Astocyte,

    I too (like many here I am sure) have Ehlers Danlos, hypermobility type. Did they give you any strategies for dealing with it? I have found that pilates (using the machines) helps in that it strengthens the core muscles and makes up for some of the "slack" in the connective tissue. Other than avoiding overstretching (a temptation!), what else did they recommend?

    SOC, there are good EDs sites that help you self diagnose EDs through photos and info on the body proportions that are usually involved.

    Best,
    Sushi
     

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