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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


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