Lincolnshire CFS/ME Service. CFS/ME When is it more than just tiredness? Presenter: Lynsey Woodman Specialist Occupational Therapist

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1 Lincolnshire CFS/ME Service CFS/ME When is it more than just tiredness? Presenter: Lynsey Woodman Specialist Occupational Therapist

2 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

3 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.

4 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.

5 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)

6 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.

7 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/ support. Telehealth is currently being piloted. Education/training on CFS/ME to all professionals involved in care

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9 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

10 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 hypothalamicpituitary-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.

11 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.

12 National and Local Statistics Studies have estimated 0.2% - 0.7% of the population have CFS/ME (i.e per 100,000) 4:1 ratio of females to males Predominantly affects young adults between 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.

13 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

14 Why do people get CFS/ME? Chronic stress Genetic link Hormonal Lifestyle Prolonged high achievement High standards Virus Trauma Stressful event Surgery Vaccination Poor sleep Over-exertion Boom & bust Disorganisation Denial Isolation Stress Sensitisation

15 Neurons that fire together wire together neuroplasticity cbt-edu.co.uk cbt-associates.com

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17 Chronic Fatigue Syndrome/ME Management and rehabilitation strategies

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19 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.

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21 Symptoms 7. REST Vicious Circle of CFS/ME 4. 3.

22 Lifestyle/Activity management including Pacing and Grading Activity

23 Posture and Movement

24 Sleep Management I m so exhausted why can t I sleep? I m so exhausted I just can t stay awake

25 Dietary Management

26 I m letting everyone down Maybe there is something more wrong with me Why is nothing showing up on blood tests? Am I going to be like this forever? Why is it taking so long to get better? I feel so useless I feel people don t understand? Is it me? Am I going mad?

27 Managing memory problems

28 Stress Management

29 Pain management

30 Learning to chill!! Mindfulness Health Qi Gong Breathing exercises Relaxation techniques Prioritising fun! Time out

31 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.

32 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.

33 Any Questions??

34 Contact address CFS/ME Team 14a Grantham Hospital 101 Manthorpe Rd Grantham NG31 8DG Tel: