CFS/ME Clinical and Research Network and

Collaboration

CFS/ME Clinical and Research Network and

Collaboration

Esther CrawleyEsther Crawley

Formation of the CCRNCFormation 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 seenActive work streams

2009: Research network250 membersActive training programme

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 seenActive work streams

2009: Research network250 membersActive training programme

CCRNCCCRNC

2007: Joint meeting2009: Merged to form CCRNC

ConstitutionCombined ExecutiveIncreasing number of members

2007: Joint meeting2009: Merged to form CCRNC

ConstitutionCombined ExecutiveIncreasing number of members

AIMAIM

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.

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.

ObjectivesObjectives2.2.1 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

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)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

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)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.

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 streamsWork streams

TrainingPatient participationResearchMinimum Data Set ImplementationPod: information resource

TrainingPatient participationResearchMinimum Data Set ImplementationPod: information resource

Patient & Carer involvementPatient & 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

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 servicesBenchmarking services

ConstitutionLargest longitudinal cohort in the

world

ConstitutionLargest longitudinal cohort in the

world

National Outcomes Dataset (NOD)

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 up22 teams contributing (> 3000

new per year)

All teams: Minimum Data set allow audit and bench marking

MDS: demographic, markers of severity, goal, employment and education

Assessment and follow up22 teams contributing (> 3000

new per year)

What do we want?What do we want?

We all wantWe all want

Excellent services Treatment that worksAccessibility for all including

children and severely affected

Excellent services Treatment that worksAccessibility for all including

children and severely affected

What do we needWhat do we need

Research into causes and treatment

Benchmarking and audit of services

Increased accessibility

Research into causes and treatment

Benchmarking and audit of services

Increased accessibility

Bench marking & APPGBench marking & APPG

0

20

40

60

80

100

%

Q1 Q2 Q3 Q4

Therapeutic Relationship

Certainly true

Partly true

Not true

Don’t know

1. I feel that the professionals who saw me listened to me, 2. It was easy to talk to the professionals who saw me, 3. I was treated well by the professionals who saw me, 4. My views and worries were taken seriously

Improved a great deal/ moderately improved

(41%)

Improved Slightly(22%)

Stayed the same(27%)

“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”

“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 FutureThe Future

StrengthsWeaknessesOpportunitiesThreats

StrengthsWeaknessesOpportunitiesThreats

StrengthsStrengths

Research:Largest cohort in the worldCentralised outcome data (> 3000 patients

per year)Evaluation of servicesWorking together:

600 clinicians and researchersMRC, NIHR and WelcomePatient & Carer repsCharity membership

Research:Largest cohort in the worldCentralised outcome data (> 3000 patients

per year)Evaluation of servicesWorking together:

600 clinicians and researchersMRC, NIHR and WelcomePatient & Carer repsCharity membership

Current CCRNC research 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

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.

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

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

WeaknessesWeaknesses

Specialist servicesSpecialist services

WeaknessesWeaknesses

Limited coverage - diagnosis and txInadequate resources for children and

severely affectedHaven’t bench marked yetInadequate evidence base particularly

for children and severely affectedPatient involvement

Limited coverage - diagnosis and txInadequate resources for children and

severely affectedHaven’t bench marked yetInadequate evidence base particularly

for children and severely affectedPatient involvement

OpportunitiesOpportunities

Research:Only place able to do large scale biological

research eg Genome Wide Association studies

Potential to transform careResearchPolitical pressure

Ability to provide national training programmes

Research:Only place able to do large scale biological

research eg Genome Wide Association studies

Potential to transform careResearchPolitical pressure

Ability to provide national training programmes

ThreatsThreats