Transcript Document

CFS/ME Clinical and
Research Network and
Collaboration
Esther Crawley
Formation of the CCRNC
 1999 Research Network
 Forum researchers and clinicians - 50 members
 2004 Collaborative
 13 Centres, 37 adult teams, 11 paediatric teams
 2009: Collaborative
 Increased number of clinical teams / patients seen
 Active work streams
 2009: Research network
 250 members
 Active training programme
CCRNC
2007: Joint meeting
2009: Merged to form CCRNC
Constitution
Combined Executive
Increasing number of members
AIM
The CCRNC is a multidisciplinary
organisation which exists to promote
and support the delivery of evidenced
based treatment for children, young
people and adults with CFS/ME
throughout the UK.
Objectives
 2.2.1 To champion evidence-based approaches
to the treatment of CFS/ME, such as those
provided in the NICE guidelines
 2.2.2 To provide a forum for the monitoring
and dissemination of new evidence for the
management of CFS/ME as it emerges
 2.2.3 To advocate for excellence in the
provision of, and for equity of access to,
clinical services for children, young people and
adults with CFS/ME
 2.2.4 To support the delivery of services and
to enable services to maintain standards of
care in the treatment of CFS/ME as set out in
the NICE guidelines
Objectives (2)
2.2.5 To use clinical expertise and
evidence to influence and inform
healthcare policy
2.2.6 To promote, facilitate and provide
training for clinicians and researchers
from all disciplines involved in the
diagnosis and treatment of CFS/ME
2.2.7 To foster research collaborations
and communication between clinicians,
researchers, professional bodies and
charities
Objectives (3)
2.2.8 To facilitate patient involvement
in the development of evidence-based
services and to promote patient centred
care. To foster co-operation and
collaboration with teams, charities and
individuals that share these principles
2.2.9 To encourage and facilitate the
systematic and rigorous audit,
benchmarking and evaluation of
CFS/ME assessment, treatment and
services.
Work streams
Training
Patient participation
Research
Minimum Data Set
Implementation
Pod: information resource
Patient & Carer involvement
 The CCRNC Executive will have no less than
two and not more than four patient/carer
members…..
 The patient or carer will be involved in work
streams
 The CCRNC Executive will invite no more than
four people drawn from National UK CFS/ME
organisations which explicitly support the aims
and constitution of the organisation to sit on
the Executive committee as either observers
or members
Benchmarking services
Constitution
Largest longitudinal cohort in the
world
National Outcomes Dataset
(NOD)
All teams: Minimum Data set 
allow audit and bench marking
MDS: demographic, markers of
severity, goal, employment and
education
Assessment and follow up
22 teams contributing (> 3000
new per year)
What do we want?
We all want
Excellent services
Treatment that works
Accessibility for all including
children and severely affected
What do we need
Research into causes and
treatment
Benchmarking and audit of
services
Increased accessibility
Bench marking & APPG
Therapeutic Relationship
100
80
Certainly true
60
Partly true
%
40
Not true
Don’t know
20
0
Q1
1.
2.
3.
4.
Q2
Q3
Q4
I feel that the professionals who saw me listened to me,
It was easy to talk to the professionals who saw me,
I was treated well by the professionals who saw me,
My views and worries were taken seriously
Improved a
great deal/
moderately
improved
(41%)
Stayed the same
(27%)
Improved Slightly
(22%)
 “My referral to the CFS/ME service has been a godsend. I wasn’t
looking for a miracle cure from this clinic and I think that is
possibly the right attitude to have because there is no miracle
cure. However, it has provided me a real lifeline in giving me
belief that I wasn’t going mad nor was the illness in my head
(unlike my unsupportive GP) and my OT really seemed to
understand the condition. Her advice has proved very helpful.
Also, my meeting with the dietician was very productive. I
absolutely cannot fault the service I received/receive.”
 “The support of the service has helped me to go from being
nearly housebound to back to work.”
 “I had a great feeling of relief when I came to the service because
I had a formal diagnosis by a person who is fully informed about
the condition. I found my sessions essential – I do not think I
would have been able to cope alone without the support given. It
was helpful being able to discuss my concerns with a
knowledgeable person, we were able to work together towards a
recovery programme that was suitable for me.”
 “I am so pleased with the service provided and I wish I had found
out about the CFS ward when I first got ME. My quality of life
would have been better and I would not have been thinking for
the past 9 year that it was all in my head.”
 “Every aspect of the treatment I received from the CFS Clinic was
really helpful, kind, understanding, thoughtful and practical”
The Future
Strengths
Weaknesses
Opportunities
Threats
Strengths
Research:
Largest cohort in the world
Centralised outcome data (> 3000 patients
per year)
Evaluation of services
Working together:
600 clinicians and researchers
MRC, NIHR and Welcome
Patient & Carer reps
Charity membership
Current CCRNC research
 Appendix 3: List of current research studies being carried out
by members of the CCRNC
 1. Gene expression in CFS
 2. Qualitative impact of CFS on young people
 3. Cognitive factors and levels of adjustment
 4. Changes in cognitive processes and changes in outcome
 3. Development of an activity pacing questionnaire
 4. Relation between changes in physical activity and treatment
outcome
 5. Orthostatic Training in Chronic Fatigue Syndrome; A Randomised
Placebo-Controlled Trial
 6. Defining the prevalence of autonomic dysfunction and its
consequences in ME/CFS – a clinical cohort study
 9. Longitudinal Cohort Study to determine the Prevalence of
Autonomic Dysfunction and Relationship with Outcome in Patients
with Myalgic encephalitis (ME)/ Chronic Fatigue Syndrome (CFS).
 10 Examining structural and functional abnormalities of brain, heart
and muscle using MRI in those with CFS/ME
 11. Multi-site peripheral pulse assessment of postural vasomotor
reflexes
 12. Non-invasive fluorescence spectroscopy measurement of skin
tryptophan
 13. Thermoregulatory dysfunction assessments using whole
body thermography
 14. What is the prevalence of CFS/ME at age 13: ALPSAC
 15. Analysis of the predictors of CFS/ME in children using
ALPSAC
 16. Outcome in children with CFS/ME - analysis of longitudinal
cohort
 17. Early intervention to prevent CFS/ME
 18. Comparison of service models in the NHS
 19. A survey of health needs and experiences of people
accessing an NHS Service.
 20. Grounded theory study on concepts of use of time, tempo
and temporality in CFS/ME.
 21. The PACE trial (Pacing, graded Activtiy, and CBT for CFS:
a randomised Evaluation)(www.pacetrial.org)
 22. Chronic Fatigue and Ethnicity: prevalence, explanatory
models and service use in a nationally representative sample
of six ethnic groups.
 23. Cytokine responses to exercise and activity in patients
with the chronic fatigue syndrome: proof of principle study
 24. General and specific risk markers and preventive factors
for both chronic fatigue and irritable bowel syndromes in a
birth cohort.
 25. Service evaluation on practice nurses knowledge of the
NICE guidelines for CFS/ME primary care
 26. T and B Memory cell function and NK activity. Along with
Dr XX at XX Hospital Med School investigation genetic
alterations in CFS and possible infectious agents.
 27. Systematic literature review investigating the
effectiveness of videoconferencing as a means of delivering
therapy to CFS/ME patients
 28. Scoping exercise investigating the feasibility of delivering
therapy via in-home desktop videoconferencing to CFS/ME
patients in North Cumbria
 29. Pilot trial investigating the feasibility of delivering therapy
via in-home desktop videoconferencing to CFS/ME patients in
North Cumbria
 30. Pilot user-led qualitative project on Users Perspectives of
a Mindfulness Approach within a CFS/ ME service
 31. Cochrane review of pharmacological treatments for CFS
 32. Actigraphy as a measure of sleep quality in CFS
 33. Post-exertional malaise in CFS/depression/MS
 34. Attitudes to CFS amongst medical students and other
student groups
Weaknesses
Specialist services
Weaknesses
Limited coverage - diagnosis and tx
Inadequate resources for children and
severely affected
Haven’t bench marked yet
Inadequate evidence base particularly
for children and severely affected
Patient involvement
Opportunities
Research:
Only place able to do large scale biological
research eg Genome Wide Association
studies
Potential to transform care
Research
Political pressure
Ability to provide national training
programmes
Threats