Standing up for Fatigue

Julia L Newton MBBS, FRCP, PhD

Professor of Ageing and Medicine

Newcastle University

Outline

•  Previous research

Outline

•  Previous research •  Clinical service

Outline

•  Previous research •  Clinical service •  Current research

Outline

•  Previous research •  Clinical service •  Current research

•  What I would do if I was running Scotland and had the opportunity to change the management of CFS/ME patients …

Research themes

•  Autonomic nervous system function in health and disease

•  Chronic diseases

•  CFS/ME

Dysautonomia-Associated Fatigue (DAF)

CFS/ME Chronic Disease

DAF Fatigue

Non-DAF Fatigue

Fatig

ued

Non

-Fat

igue

d

Newton QJM 2007

Primary Biliary Cirrhosis (PBC)

In PBC Fatigue is NOT benign

Perceived fatigue is comparable across chronic disease groups

Falls Syncope

Dizziness

Ward & Kenny, Am J Med 1993

So what do we see in my clinical service ?

Falls Syncope

Dizziness

Ward & Kenny, Am J Med 1993

So what do we see in my clinical service ?

Dysautonomia

Falls Syncope

Dizziness

Ward & Kenny, Am J Med 1993

So what do we see in my clinical service ?

Dysautonomia

Fatigue

Legge et al., Europace 2008

Fatig

ue s

ever

ity

Fatig

ue s

ever

ity

Fatigue is more severe in those with low blood pressure

Parasympathetic

Sympathetic

Symptoms on standing occur in 89% of those with CFS/ME

Actual blood pressure abnormalities

Newton Psychosomatic Research in press

What happens if you tilt CFS patients ?

•  Symptoms during tilt ~ 48%

52% have orthostatic hypotension

a) b)

0 2 4 6 8 10 12 min 0 2 4 6 8 min

27 % have Positional Orthostatic Tachycardia Syndrome (POTS)

Ewan et al., Europace 2008 Hoad et al., QJM 2008

Technological Developments

Parameters •  Haemodynamic – HR & BP

•  Autonomic – Heart rate variability & Baroreflex sensitivity

•  Cardiovascular – Impedance Cardiography

School of Biology

Asp Gln

NAA

Gln GABA NAA

Newcastle Magnetic Resonance Centre

MRI studies

Muscle MRI

Muscle MRI

Cardiac MRI

Cardiac MRI

Brain MRI

Brain MRI

Brain MRI

Opportunities ..

Your options ?

•  Identify and investigate those who present to CFS/ME Clinical services who also describe syncope or pre-syncope.

•  Identify and investigate those who present to CFS/ME Clinical services who describe symptoms on standing

Your options ?

•  Haemodynamic assessment of everyone presenting to a CFS/ME Clinical Service – treatment of abnormalities when they are found

•  Treatment of everyone with CFS/ME with an autonomic phenotype

•  Treatment of everyone with CFS/ME with interventions to address dysautonomia

Interventions ?

•  Home orthostatic training

•  Midodrine

Current work

•  ME Research UK project – establishing a prospective cohort. – Brain – Muscle – Liver

MRC PBC study Research for patient benefit

Fatigue Work is Supported by

Liver North

Northern CFS/ME Clinical Network

JRRG

Questions ?

•  Cross-border collaboration - Is there relevant experience of 'cross-

border' collaboration in any aspect of this research, and could such collaboration be further developed to the advantage of both Newcastle University (and NHS North East) & NHS Scotland (or any of its regions)?

•  International collaboration - Is there any experience of international collaboration relevant to this research, or how that could affect service provision?

•  Ownership of research results - Where collaboration might take place, could shared ownership of results, (and any treatment processes developed from them), cause problems for development of NHS service provision?