CFS/ME Special Interest Group
Tired all the time?
Recognising
Chronic Fatigue Syndrome/ME
AJM\April2012\v1
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