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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

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scottish good practice statement on me cfs

SCOTTISH GOOD PRACTICE STATEMENT ON ME-CFS

Dr GregorPurdie

GP and Clinical Lead for ME-CFS Dumfries and Galloway Health Board

dr gregor purdie
Dr GregorPurdie
  • 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 purdie1
Dr GregorPurdie
  • 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
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
presentation
Presentation
  • Onset sudden on gradual
  • Post viral
  • Physical illnesses
  • Stressful events
presenting symptoms
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 symptoms1
PRESENTING SYMPTOMS
  • Recurrent flu like symptoms
  • Sore throats
  • Painful swollen lymph glands
  • Sleep disturbance
  • Headaches
  • Muscle twitches/spasms/weakness
  • Fogging of cognition
other presenting symptoms
Other Presenting Symptoms
  • Peri-oral and peripheral parasthesiae
  • Postural light headedness
  • Palpitations
  • Dizzyness
  • Sensitivity to light and noise
  • Pallor
  • Nausea and Irritable Bowel Symptoms
other p resenting symptoms
Other Presenting Symptoms
  • Alcohol Intolerance
  • Urinary Symptoms
  • Feelings of fever and shivering
  • Altered appetite and weight
examination
EXAMINATION
  • Height and weight
  • ERECT AND SUPINE BP
  • General Clinical Examination
  • Skin and joints
  • Neurological Examination
  • Mental State Examination
red flags
“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
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
INVESTIGATIONS FOR ALL PATIENTS
  • FBC
  • U&Es and Creatinine and LFTs
  • TFTs
  • Glucose
  • ESR/CRP
  • Calcium
  • CreatineKinase
investigations where indicated by history or examination
INVESTIGATIONS WHERE INDICATED BY HISTORY OR EXAMINATION
  • AMA (if minor alterations in LFTs)
  • ANA
  • Coeliac Serology
  • CMA
  • EBA
  • ENA
  • HIV
investigations where indicated by history or examination1
INVESTIGATIONS WHERE INDICATED BY HISTORY OR EXAMINATION
  • Hepatitis B and C
  • LYME SEROLOGY
  • Serology for chronic bacterial infections
  • Toxoplasma
  • ECG
  • Tilt table testing
general principles
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
TREATMENT OF SPECIFIC SYMPTOMS
  • Headache
  • Irritable Bowel Syndrome
  • Dizzyness
  • Depression
  • Sleep disturbance
  • Follow standard clinical practice
  • Physical treatments – eg TNS and Acupunture
medication
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
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
REHABILITATION
  • PACING
  • Graded Exercise
  • Couselling
  • Cognitive behaviour therapy
presentation1
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
Prognosis
  • The evidence available suggests that children and young people are more likely to recover than adults.
principles of care
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 co-ordinated response from pratitioners”
diagnosis
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
Clinical Presentation
  • Loss of energy/fatigue
  • Cognitive problems
  • Disordered sleep patterns
  • Weight change
  • Gastro-intestinal disorder
  • Investigation similar as for adults
clinical management
Clinical Management
  • 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 co-morbid depression where present
care needs
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
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
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 affected1
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 affected2
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 care1
Principles of Care
  • 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
m anagement
Management
  • Medication – value of liquid preparations
  • Referral
  • Diet
  • Hospitalisation
  • Respite
  • Caring for the Carers
  • Part of Long Term Conditions planning
prognosis2
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
research and development
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
ad