tired all the time - south tees hospitals nhs foundation...

RCN CFS/ME Special Interest Group

Tired all the time?

Recognising

Chronic Fatigue Syndrome/ME


CFS/ME recognition

WHO neurological illness

Chief Medical Officer

Medical Research Council research strategy

RCN Special Interest Group

All Party Parliamentary Group Inquiry

Media interest with Gilderdale case


What is CFS/ME?

Unexplained, persistent fatigue >4 months

Post exercise malaise > 24 hrs

Sleep & temperature disturbances

Sore, swollen throat

Muscle & joint pain and stiffness

Forgetfulness

Poor concentration / headaches

Accident prone

NB this list is not exhaustive


Alternative terminology

Chronic Fatigue Syndrome

Myalgic encephalomyelitis (ME)

Post viral fatigue

= CFS/ME NB Don’t get caught up in semantics

Use our NHS resources wisely

Let’s put our energy into earlier diagnosis and improving treatment outcomes


How common is it?

NICE guidance (2007)

Estimates 0.3-0.4% of population

E.g. in GP practice with a register

of 10,000 patients

Estimated that 30-40 patients are

likely to have CFS/ME

….But not all will be diagnosed


Tip of the iceberg

Diagnosed and referred

to Specialist Service

Diagnosed and managed

in Primary Care

Undiagnosed


Vulnerable groups

Nurses Royal Free

Hospital

Teachers

Even not working Retired/ill health

On benefits

Caring & conscientious + demanding job


What are the symptoms?

Physical

Cognitive

Emotional

Tip!

Sleep deprivation may present as

‘depression’


What else could it be? Alternative diagnoses

Thyroid problems

Anaemia

Diabetes

Coeliac disease

Obesity

Anxiety and/or depression

HIV or Hepatitis

Routine screening in primary care Early diagnosis < 4-6 months

Prompt treatment

Rehabilitation and recovery

Improved health outcome if patient’s 1st contact with health service is positive


Listen to your patient….

I’m tired all the time

I’m not coping at work

I don’t seem to

have the

energy that I

used to

I don’t know

what’s wrong

with me, I

feel so ill

most of the

time

My legs feel like lead

I can’t

think

straight

My head

feels like

cotton wool


How is it diagnosed?

History of present illness

Clinical assessment

Physical examination

Routine blood screening

Exclude other causes of fatigue


What is the treatment?

Gradual rehabilitation

Pacing/activity management

Gentle exercise therapy

Positive thinking and support

Realistic goals

Patience & time to convalesce


Where is the nearest service?

National Centre

Regional Networks

Local Specialist Service

Ask your GP to refer

Find service on Choose & Book


Teesside CFS/ME Specialist Service

The James Cook University Hospital, Middlesbrough TS4 3BW


What if I suspect CFS/ME?

Assess your patient:

Physical symptoms

Activity levels

Cognitive impairment

Emotional status

Remember to PACE…


Important physical marker!

Over activity (however small)

increases symptoms

Swollen, sore throat

Legs ‘like lead’

Head feels heavy/achy

Recovery takes days

= post exercise malaise


Important cognitive marker!

Normal brain function can be impaired

Poor short term memory

Can’t concentrate

Struggles to understand new information

Struggles to maintain conversation

Jumbled word order

= signs of cognitive impairment


Key assessment questions

If you do too much on a good

day, how do you feel

afterwards?

Look for post exercise malaise

How do you manage on the

telephone?

Look for cognitive impairments


Time as marker!

If patient is still fatigued after 4-6

months

No other illness present

Diagnosis of CFS/ME should be

considered


Principles of care

Holistic assessment Physical, cognitive, emotional

Prompt action to remove/reduce stress

Improve prognosis

Evidence-based rehabilitation Early diagnosis

Start advice and rehabilitation

Co-ordination of care

Planning longer term patient goals

Empathy and support

Act as advocate where necessary


Patient information

Part of our duty of care

Patients need simple, good quality information Understand illness

Manage symptoms

Maintain/improve health

Increase wellbeing

Understanding information is key to informed consent Cognitive impairment = vulnerable adult


Patients’ rights

Patients are likely to be classed as

disabled under the law

Disability Discrimination Act (1995)

Reasonable adjustments

In employment

In health care

Do you provide written advice /

management plans for your patient

with known memory problems?


Further information

Understanding the illness NHS Direct website (A-Z Health topics)

BBC Health website (A-Z Health topics)

NICE Guidance (No 53)

Help with employment NHS Plus Occupational Health CFS/ME advice

Direct Gov www.direct.gov.uk

Access to work

Charity support Action for ME www.afme.org

Benefits advice Welfare Rights Advisors in Job Centres

Action for ME

Disability Alliance

http://www.direct.gov.uk/

http://www.afme.org/


Authors

Sister Amanda McGough

Tees CFS/ME service

South Tees NHS Foundation Trust

Sister Colette Bennett

Central Lancashire & South Cumbria

CFS/ME service

Mrs Dianne Burns

RCN Chair, CFS/ME Specialist Interest

Group

University of Manchester

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