Recognising Chronic Fatigue Syndrome/ME Tired all the time? Recognising Chronic Fatigue Syndrome/ME DB to send RCN logo AJM\April2012\v1

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

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

Listen to the person…. I feel like I can’t swallow properly, my throat is swollen I don’t seem to have the energy that I used to I’m tired all the time I can’t think straight My legs feel like lead I’m not coping at work I don’t know what’s wrong with me, I feel so ill most of the time My head feels like cotton wool

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

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)

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…

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

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...

Important cognitive marker! Feels like brain fog… 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 I keep getting my words mixed up…

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’

Sleep disturbance and fatigue can be mistaken for ‘depression’ 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’ 1st contact positive – pt recovered FINE trial – Colette to email 1st contact is positive – improved outcome for patients

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

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

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 

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 Royal Liverpool & Broadgreen University Hospitals NHS Trust Sister Grace Higgins Specialist Nurse CFS/ME East Manchester CFS/ME service, Stockport PCT