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