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