CFS/ME Special Interest Group

Tired all the time?

Recognising

Chronic Fatigue Syndrome/ME

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CFS/ME Special Interest Group

What is CFS/ME?

Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME) Physical and cognitive symptoms

Substantial emotional impact on a person and their life

Do not underestimate the impact of diagnosis Person needs to develop a different way of living to

manage the condition

Person needs to learn to manage setbacks/relapses

There is no cure Classified as a long term condition

CFS/ME Special Interest Group

How do you recognise CFS/ME?

Main problem is unresolved fatigue ‘tired all the time’

Person may have had recent illness Just not recovering as expected

Usually active and/or sporty Activities have reduced due to fatigue

Past history may include ENT problems eg tonsils / adenoids (childhood)

Asthma / eczema / hayfever / allergies

Irritable bowel and/or rheumatological problems

CFS/ME Special Interest Group

Listen to the person….

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

I feel like I can’t

swallow properly,

my throat is

swollen

CFS/ME Special Interest Group

Recognising the person

Typically a caring & conscientious person

Puts needs of others before self

Takes on additional responsibilities

May be in a caring profession

Education / Health / Social Care

Job can be physically and cognitively demanding

Environment may involve high level of stress

May not be working

Retired/ill health

On benefits

May be involved in the community

Church / Schools / Brownies / Scouts

CFS/ME Special Interest Group

Recognising key symptoms

Physical Unexplained, persistent fatigue >4 months

Post exercise malaise > 24 hrs

Sleep & temperature disturbances

Sore, swollen throat / headaches

Abdominal disturbances (IBS type symptoms)

Muscle & joint pain and stiffness

Cognitive Problems with concentration

Poor short term memory

Delayed information processing

Poor spatial awareness (accident prone)

CFS/ME Special Interest Group

What if I suspect CFS/ME?

Assess the person:

Physical symptoms.…increase with activity, settle with rest

Activity levels………….much reduced, cycle of ‘boom and bust’

Cognitive fatigue……..fuzzy thinking, looks ‘blank’ at times

Emotional status….…irritable, weepy, mood can be low

Remember PACE as an acronym…

CFS/ME Special Interest Group

Key assessment questions

On a good day, if you do too

much… how do you feel afterwards?

how long does it take you to

recover?

Look for post exercise

malaise

How does your head feel?

‘Fuzzy’ thinking

Brain ‘like cotton wool’

Look for cognitive fatigue

Illustration of post exercise

malaise

0 1 2 3 4 5 6 7

Recovery (in days)

Ac

tiv

ity

le

ve

ls

None

CFS/ME

CFS/ME Special Interest Group

Important physical marker!

Over activity (however small) increases

symptoms eg

Swollen, sore throat

Legs ‘like lead’

Head feels heavy/achy

Recovery can take several days

= post exercise malaise

My throat

is sore and

my glands

are up…

It feels like I

am getting

flu...

CFS/ME Special Interest Group

Important cognitive marker!

Impaired brain function

Poor short term memory

Can’t concentrate

Can’t understand new information

Struggles to maintain conversation

Jumbled word order / slurs speech

= signs of cognitive fatigue & exhaustion

Feels like

brain

fog…

I keep

getting my

words

mixed

up…

CFS/ME Special Interest Group

How is it diagnosed?

History of present illness

Clinical assessment

Physical examination

Routine blood screening

Exclude other causes of fatigue

If CFS/ME is suspected, start advice early

Don’t let person ‘push through it’

CFS/ME Special Interest Group

What else could it be? Alternative diagnoses eg

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 management

Maximise rehabilitation and recovery

Be kind and supportive

Evidence that health outcome is improved

if patient’s 1st contact with health professional is positive

Tip! Sleep disturbance

and fatigue can be

mistaken for

‘depression’

CFS/ME Special Interest Group

CFS/ME rehabilitation

Gradual physical and cognitive programme Activity management

Gentle exercise therapy

Positive thinking and support

Realistic goals

Patience & time to convalesce

Patients are extremely vulnerable to stress Need to learn new coping strategies

May need an advocate at times

CFS/ME Special Interest Group

Patient information

Part of our duty of care

Patients need good quality information

Understand illness & manage symptoms

Maintain/improve health

Increase wellbeing

Easy to understand format

Bullet points / visual images / charts

Online so patients can access in their own time

Access information via charities eg

Action for ME

ME North East

CFS/ME Special Interest Group

Into the future…

CFS/ME is a long term condition

It can fluctuate, sometimes unpredictably,

BUT Good self management with advice and support

Successful rehabilitation is possible for many

Keep to programme to maintain health & wellbeing

Remember! There are lots of success stories out there

Everyone benefits from hope, encouragement

and praise

CFS/ME Special Interest Group

RCN CFS/ME Special Interest Group Mrs Dianne Burns

Chair, CFS/ME Specialist Interest Group

Lecturer in Community Nursing, University of Manchester

Sister Colette Bennett Specialist Nurse CFS/ME,

Royal Free London NHS Foundation Trust

Sister Amanda McGough Specialist Nurse CFS/ME, Infectious Diseases

South Tees Hospitals NHS Foundation Trust

Sister Deborah Roberts Specialist Nurse CFS/ME, Infectious Diseases

Royal Liverpool & Broadgreen University Hospitals NHS Trust

Sister Grace Higgins Specialist Nurse CFS/ME

East Manchester CFS/ME service, Stockport PCT