Lincolnshire CFS/ME Service
CFS/ME
When is it more than just
tiredness?
Presenter: Lynsey Woodman
Specialist Occupational Therapist
CFS/ME Team
• Anne Abey: Head of Physical Health Specialty
• Lynsey Woodman, Specialist Occupational Therapist
• Anne Cossins, Physiotherapist
• Shelley McGill, Senior Rehab Asst
• Bridget Goard Assistant Psychologist
What we are commissioned to do?
• To assess and treat children, adolescents and adults with a
medical diagnosis of CFS/ME.
• We currently see mild to very severe/housebound
individuals.
• Covering approximately 2350 square miles, total population
of 715,000 with 102 GP practices.
Referrals:
• Currently receiving between 5-10 referrals a
week. Two of these are usually for a child.
• Over the last year we have seen a 25%
increase in adult referrals and 39% increase
in child referrals.
Diagnosing CFS/ME
• Debilitating persistent or relapsing fatigue for at least 4months in adults, 3
months in children and is not life long
• Not the result of ongoing exertion and not subsequently alleviated by rest
• Severe enough to cause substantial reduction in previous levels of
occupational, educational, social, social, or personal activities
• At least four of the following symptoms persisted or recurred during 4 or
more consecutive months of illness and did not predate the fatigue:
Impaired memory or concentration; sore throat; tender lymph nodes
(symptom); muscle pain; pain in several joints without swelling or redness;
headache; unrefreshing sleep; feeling ill after exertion.
(NICE 2007)
Referral criteria
• All children, adolescents, adults and older adults with a medically confirmed diagnosis of CFS/ME.
• Blood tests as recommended by NICE (DoH 2007) are completed.
• Referrals can come from multiple sources:
GP, Consultants, CMHT’s, Social Services, CAMHS and other professionals.
What can we offer?
• We are a therapy led CFS/ME rehabilitation service.
• We offer a domiciliary service to severe/very severe sufferers. Majority of mild-moderate sufferers are being offered CFS/ME rehabilitation groups.
• Support and advice to employers/occupational health and schools and universities.
• Currently all children are seen individually.
• Telephone/email support. Telehealth is currently being piloted.
• Education/training on CFS/ME to all professionals involved in care
What is CFS/ME?
• CFS/ME is a multi-factoral complex condition that currently
does not have a disease specific biomarker.
• Myalgic Encephalomyelopathy (M.E)
• Post Viral Fatigue Syndrome
• Chronic Fatigue Syndrome
• Chronic Immune Dysfunction Syndrome
• Neurasthenia
What is CFS/ME?
• Viral?
No definite evidence as yet…
• Autonomic dysfunction:
Evidence supports an association between the condition and various forms of hypotension, reduced heart rate variability, alterations in the hypothalamic-pituitary-adrenal axis and sympathetic stress response systems.
• Immune dysregulation:
There is evidence for a disturbance in innate and adaptive immunity in CFS/ME including alterations in cytokine profile, absolute and functional alterations in T cells and NK cells and occurrence of autoantibodies and allergic reactions that may explain some of the manifestations such as fatigue and flu-like symptoms. A number of infectious and environmental exposures have been associated as triggering these changes.
What is CFS/ME?
• Genetic?
• Neurological?
Fatigue, headache, facial pain and myalgia are reported symptoms of
CFS/ME that may involve altered sensory and/or cognitive processing in
the relevant neural pathways.
• Hormonal? Down regulation of the HPA axis?
• Psychological?
Currently the MRC are funding a number of biomedical studies.
National and Local Statistics
• Studies have estimated 0.2% - 0.7% of the population have CFS/ME (i.e 200-700 per 100,000)
• 4:1 ratio of females to males
• Predominantly affects young adults between 20-40 yrs.
• Recent study indicated 1 in 100 adolescents may have CFS.
• CFS/ME affects all ages and social groups
• Prognosis can be worse the longer a person has had the condition.
CFS/ME Symptoms
• Overwhelming persistent fatigue unlike any feeling of normal tiredness.
• Post exertional malaise
• Mental fatigue, impaired mental performance, STM memory and concentration.
• Muscle and joint pain without redness or swelling
• Sleep difficulties
• Poor appetite
• Sore throat, swollen neck glands, tender lymph nodes
• Headaches, dizziness and visual problems
• Sensitivity to bright lights, loud noises, sometimes touch
• Food/drug intolerance
• IBS
• Muscle Twitching
• Vertigo
• Mood disturbance
• Parasthesiae
• Word finding difficulties
• Alcohol intolerance
• Palpitations
• Nausea
• Temperature extremes, excessive sweating
Why do people get CFS/ME?
Poor sleep Denial
Over-exertion Isolation
‘Boom & bust’ Stress
Disorganisation Sensitisation
Virus
Trauma
Stressful event
Surgery
Vaccination
Chronic stress
Genetic link
Hormonal
Lifestyle
Prolonged high
achievement
High standards
28.09.2009
cbt-edu.co.uk cbt-associates.com
neuroplasticity
Neurons that fire together wire together
Chronic Fatigue Syndrome/ME
Management and
rehabilitation strategies
CFS/ME Treatment :
A Bio-Psychosocial Model
• Education
• Making connections between physiological and
psychological factors. Mind and Body
• Rationalising different treatments and medications.
• Negotiating change.
• Recognising and acknowledging the distress and
disability caused by the symptoms.
Vicious Circle of CFS/ME
Symptoms
REST
1
1.
2.
3.
4.
5. 5.
6.
7.
Lifestyle/Activity management including Pacing and Grading Activity
Posture and Movement
Sleep Management
I’m so exhausted I
just can’t stay
awake
I’m so exhausted
why can’t I sleep?
Dietary Management
I’m letting everyone
down
I feel so useless
Is it me? Am I going mad?
Why is nothing showing up on
blood tests?
Why is it taking so
long to get better?
Am I going to be like
this forever?
Maybe there is something
more wrong with me
I feel people don’t
understand?
Managing memory problems
Stress Management
Pain management
Learning to chill!!
• Mindfulness
• Health Qi Gong
• Breathing exercises
• Relaxation techniques
• Prioritising fun!
• Time out
CFS/ME Management
Key areas addressed:
Sleep Hygiene
Pain management
Diet
Lifestyle/Activity management including Pacing and Grading Activity
Graded Exercise Therapy
Posture and movement
Stress Management
Relaxation/Mindfulness techniques
Assertiveness/Dealing with others
Negative thinking patterns.
Service evaluation on the CFS
rehabilitation programme: • 174 surveyed following the group. 62% response.
• 85.3% agreed that they had learned to cope with their CFS/ME better.
• 81.8% agreed that they made better use of their energy.
• Over 70% visited their GP less frequent.
• 51% Felt able to return to work.
Feedback: Service users wanted the service expanded,
more group sessions over longer period, access to more
follow up and a specialist medic.
Any Questions??
Contact address
CFS/ME Team
14a Grantham Hospital
101 Manthorpe Rd
Grantham
NG31 8DG
Tel: 01476 464046