SCOTTISH GOOD PRACTICE
STATEMENT ON ME-CFS
Dr Gregor Purdie
GP and Clinical Lead for ME-CFS
Dumfries and Galloway Health Board
Dr Gregor Purdie
• GP for 27 years
• First encouraged to take interest in this area as
a JHO in 1979
• Recognised patterns of illness in patients in GP
practice
• Clinical Lead for ME-CFS for Dumfries and
Galloway Health Board from 1997
Dr Gregor Purdie
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Developed links with MERUK
Met Keith Anderson
Member Cross Party Group on ME at Holyrood
Development of Scottish Good Practice
Statement on ME-CFS
• Parallel development of Health Care Needs
Assessment
WHY A GOOD PRACTICE STATMENT
• Ill understood clinical area
• Levels of evidence of interventions not strong
enough for SIGN Guideline
• Controversial area of practice
• Much research still needing to be undertaken
CLINICAL ASSESSMENT
Presentation
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Onset sudden on gradual
Post viral
Physical illnesses
Stressful events
Presenting symptoms
• Persistent/recurrent fatigue
• Muscle/joint aches and pains
• May be present at rest and provoked by
physical and mental exertion
• POST EXERTIONAL FATIGUE
• Substantial reduction in activity levels
PRESENTING SYMPTOMS
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Recurrent flu like symptoms
Sore throats
Painful swollen lymph glands
Sleep disturbance
Headaches
Muscle twitches/spasms/weakness
Fogging of cognition
Other Presenting Symptoms
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Peri-oral and peripheral parasthesiae
Postural light headedness
Palpitations
Dizzyness
Sensitivity to light and noise
Pallor
Nausea and Irritable Bowel Symptoms
Other Presenting Symptoms
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Alcohol Intolerance
Urinary Symptoms
Feelings of fever and shivering
Altered appetite and weight
EXAMINATION
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Height and weight
ERECT AND SUPINE BP
General Clinical Examination
Skin and joints
Neurological Examination
Mental State Examination
“RED FLAGS”
• Substantive unexplained weight loss
• Neurological signs
• Symptoms or signs of inflammatory joint
disease or connective tissue disease
• Symptoms or signs of cardio-respiratory
disease
• Symptoms of sleep apnoea
• Clinically significant lymphadenopathy
INVESTIGATION
• There is at present no confirmatory test
available on the NHS
• Present clinical investigation is to help exclude
alternative diagnoses
INVESTIGATIONS FOR ALL PATIENTS
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FBC
U&Es and Creatinine and LFTs
TFTs
Glucose
ESR/CRP
Calcium
Creatine Kinase
INVESTIGATIONS WHERE INDICATED
BY HISTORY OR EXAMINATION
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AMA (if minor alterations in LFTs)
ANA
Coeliac Serology
CMA
EBA
ENA
HIV
INVESTIGATIONS WHERE INDICATED
BY HISTORY OR EXAMINATION
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Hepatitis B and C
LYME SEROLOGY
Serology for chronic bacterial infections
Toxoplasma
• ECG
• Tilt table testing
INTERVENTIONS, MANAGEMENT
AND REHABILITATION
General Principles
• Good doctor patient relationship
• Treat patients with respect
• Empathic listening
• All treatment plans collaborative and tailored
to the needs of individual patients
TREATMENT OF SPECIFIC SYMPTOMS
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Headache
Irritable Bowel Syndrome
Dizzyness
Depression
Sleep disturbance
• Follow standard clinical practice
• Physical treatments – eg TNS and Acupunture
MEDICATION
• Usually beneficial to start with a very low dose
• Liquid preparations found to be helpful
• Side effects can be bad in the initial treatment
stages
DIETARY ADVICE
• Food intolerances reported
• Encourage a healthy diet
• Reported value from Vit B12, Vit C, co-enzyme
Q, multi-vitamins and minerals.
• Vit D
REHABILITATION
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PACING
Graded Exercise
Couselling
Cognitive behaviour therapy
SPECIAL AREAS
CHILDREN
Presentation
• CAN BE PROFOUNDLY AFFECTED
• Significant impact on development and
academic progress
• Fluctuation in severity can be more dramatic
than in adults
• Severe exhaustion, weakness, pain and mood
changes make life very challenging
Prognosis
• The evidence available suggests that children
and young people are more likely to recover
than adults.
Principles of Care
• BASED ON GIRFEC
• “feel confident about the help they are getting;
understand what is happening and why, have
been listened to carefully and their wishes have
been heard and understood; are appropriately
involved in discussions and ddecisions which
affect them; can rely on appropraite help being
available as soon as possible; and that they will
have experienced more streamlined and coordinated response from pratitioners”
DIAGNOSIS
• Speedy diagnosis to ally fears of other serious
illness
• Children can be diagnosed when symptoms
have been present for 3 months
• Diagnostic criteria as per adults
Clinical Presentation
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Loss of energy/fatigue
Cognitive problems
Disordered sleep patterns
Weight change
Gastro-intestinal disorder
• Investigation similar as for adults
Clinical Management
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As advocated in RCPCH Guideline:Activity management advice
Advice and symptomatic treatment
Early engagement with the family
Regular Review of Progress
Specific Advice on diet, sleep problems, pain
management, pyschological support and comorbid depression where present
CARE NEEDS
• A CHILD CAN BE SO PROFOUNDLY AFFECTED
THAT THE FAMILY MAY REQUIRE PRACTICAL
HELP IN THHE HOME SETTING
• SPECIALIST REFERRAL
• COMMUNITY OT
• MONITORING AND REVIEW
SCHOOLING
• DIFFICULTIES IN MAINTAINING A SCHOOL
PROGRAMME
• EXCLUDE OTHER DEFINED CAUSES OF SCHOOL
ABSENCE
• SUPPORTIVE LETTER FROM GP OUTLINING
CONDITION
• ARRANGEMENTS RESPONSIVE TO CHILD’S
CONDITION
CHILD PROTECTION
• CONCERNS THAT MISUNDERSTANDING AND
LACK OF INFORMATION ABOUT ME-CFS IN
EDUCATION AND SOCIAL SERVICES HAVE LED
TO INAPPROPRAITE INITIATION OF CHILD
PROTECTION PROCEDURES
SEVERELY AFFECTED
SEVERELY AFFECTED
• IN MOST EXTREME CASES TOTALLY
BEDBOUND or housebound and wheelchair
bound
• Can be triggered by one prominent symptom
or a cluster
• REPORT CONSTANT PAIN
• INABILITY TO TOLERATE MOVEMENT, LIGHT
OR NOISE AND CERTAIN SCENTS AND
CHEMICALS
Severely affected
• Severe – any patient who is so affected as to
be effectively housebound for a prolonged
period for time(>3 months)
• Very severe – bedridden for a prolonged
period (>3 months)
Principles of Care
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Very individualised approach
Check for inter-current illnesses
Realistic Expectations
Agreement of goals
Input from full Primary Care Team
Aware of extent of clinical needs
Management
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Medication – value of liquid preparations
Referral
Diet
Hospitalisation
Respite
Caring for the Carers
Part of Long Term Conditions planning
PROGNOSIS
PROGNOSIS
• Majority show a degree of improvement over
time
• Relapse and remission
• Milder fatigue states have a more favourable
outcome
• Significant minority severely affected for many
years
THE FUTURE
RESEARCH AND DEVELOPMENT
• Controversies on present assessment and
management eg GET and CBT
• Need for evidence base for empirical research
• XMRV
• MRC
• MERUK
• Development of a national group to drive
forward the agenda