.
Both Action for ME (AFME) and the Sussex ME Society (so called patient group and charity with long standing links to Peter White and Barts) have quickly endorsed the latest BACME Guide.
Hazel O’Dowd s a Clinical Psychologist was “involved” in the production of the BACME Guide, who was also on the
PACE Trial Management Group, and is/was ‘
Clinical Champion for CFS/ME services Avon, Somerset, Wiltshire and Gloucestershire’
AFME CEO blog: Dr Hazel O’Dowd on BACME
4 August 2015
http://www.actionforme.org.uk/get-informed/news/our-news/ceo-blog-dr-hazel-odowd-on-bacme
‘The British Association for CFS/M.E. (BAMCE) launches its new clinical guide to practical management of M.E. for healthcare professionals today. Our CEO Sonya Chowdhury invites Bristol NHS M.E. Service clinical lead Dr Hazel O’Dowd, who was involved in its production, to explain how the guide came about…..’
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2011
Hazel O’Dowd
Frenchay Hospital, Bristol, to lead £250,000 study into the effects of early intervention in CFS
News release issued by the North Bristol NHS Trust, 13 December 2011
https://www.nbt.nhs.uk/news-media/latest-news/frenchay-lead-£250000-study-effects-early-intervention-me
The UK’s biggest research study into whether early intervention could lessen the effects of chronic fatigue syndrome is due to get underway at North Bristol NHS Trust in spring 2012.
Frenchay Hospital is one of only 40 specialist NHS centres in the UK for people with chronic fatigue, also known as ME.
The multi-disciplinary team which includes occupational therapists, physiotherapists and clinical psychologists has been at the forefront of developing techniques around changes in behaviour and using exercise to help patients beat the debilitating illness.
Dr Hazel O’Dowd, the clinical psychologist who runs the centre, said:
“People with chronic fatigue feel incredibly isolated. The illness can have a dramatic and long-term effect on their life.
“Since setting up in 2003, we have worked with hundreds of patients to improve their lives.
We have particularly focused on cognitive behaviour therapy and graded exercise.
“For example, people with ME have good days and bad. On the good days it is tempting for them to push themselves and then for subsequent days they are so exhausted they can’t do anything at all.
“We teach them to pace themselves, just do a little, building up stamina, changing the way they see themselves.”
~~~~~~~~~~~~~~~~
2012
(Excerpts)
Avon Education Handout CFS/ME 2012/neurology
http://www.avongpeducation.co.uk/handouts/2012/neurology/CFSME.pdf
Dr Hazel O’Dowd
Clinical Champion for CFS/ME services Avon, Somerset, Wiltshire and Gloucestershire
CFS/ME
How big is the problem?
1/10 GP appointments are about fatigue
2% fatigue persists for 4 months, is disablingand associated with other symptoms
(3,5,8)
What is it?
Lots of controversy
Lots of diagnostic criteria
Many different study designs
One condition or many
One end of a spectrum of normality
Controversy re causation
Stigma of association with mental health
NICE
“...best regarded as a spectrum of illness that is triggered by a variety of factors in people who have an underlying predisposition”
Suicide not increased
Among 2075 people followed up in 19 published studies of the outcome of prolonged fatigue and CFS, there was one death by suicide and two unrelated deaths. These studies included mean follow up periods ranging from six months to four years, suggesting that suicide rates and overall mortality are not increased in people with CFS.
Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review.
QJM 1997; 90: 223- 233
What causes CFS/ME?
Infection (XMRV)
Mitochondrial malfunction
Primary sleep disorders/other conditions
Cognitive/Intereoception
Central system sensitivity
Prognosis
Without treatment poor >10%
With treatment (PACE trial)
Children and adolescents
Treatment
Offer a person - centred programme that aims to:
sustain or extend the physical, emotional and cognitive capacity
manage the physical and emotional impact of symptoms
Symptomatic relief
Offer cognitive behavioural therapy and/or graded therapy for mild or moderate CFS/ME
Exercise
Don’t Mention The War
BASELINES
Calculating what is safe (Average of 3 sessions/50%)
Increasing Activity
SPECIALIST SUPERVISION
Self help
Afme.org.uk
‘Overcoming fatigue’ Mary Burgess and Trudy Chalder
‘Coping with chronic fatigue’ Trudy Chalder
Local EPP
PACE Trial
Is PACING as effective as CBT and GET
Are these treatments safe?
Are they acceptable to patients?
Are they effective for any diagnostic criteria?
White et al 2011 Lancet 377, 823-836