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SCOTTISH GOOD PRACTICE STATEMENT ON ME-CFS

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

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  1. SCOTTISH GOOD PRACTICE STATEMENT ON ME-CFS Dr GregorPurdie GP and Clinical Lead for ME-CFS Dumfries and Galloway Health Board

  2. 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

  3. 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

  4. 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

  5. Clinical assessment

  6. Presentation • Onset sudden on gradual • Post viral • Physical illnesses • Stressful events

  7. 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

  8. PRESENTING SYMPTOMS • Recurrent flu like symptoms • Sore throats • Painful swollen lymph glands • Sleep disturbance • Headaches • Muscle twitches/spasms/weakness • Fogging of cognition

  9. Other Presenting Symptoms • Peri-oral and peripheral parasthesiae • Postural light headedness • Palpitations • Dizzyness • Sensitivity to light and noise • Pallor • Nausea and Irritable Bowel Symptoms

  10. Other Presenting Symptoms • Alcohol Intolerance • Urinary Symptoms • Feelings of fever and shivering • Altered appetite and weight

  11. EXAMINATION • Height and weight • ERECT AND SUPINE BP • General Clinical Examination • Skin and joints • Neurological Examination • Mental State Examination

  12. “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

  13. INVESTIGATION • There is at present no confirmatory test available on the NHS • Present clinical investigation is to help exclude alternative diagnoses

  14. INVESTIGATIONS FOR ALL PATIENTS • FBC • U&Es and Creatinine and LFTs • TFTs • Glucose • ESR/CRP • Calcium • CreatineKinase

  15. INVESTIGATIONS WHERE INDICATED BY HISTORY OR EXAMINATION • AMA (if minor alterations in LFTs) • ANA • Coeliac Serology • CMA • EBA • ENA • HIV

  16. INVESTIGATIONS WHERE INDICATED BY HISTORY OR EXAMINATION • Hepatitis B and C • LYME SEROLOGY • Serology for chronic bacterial infections • Toxoplasma • ECG • Tilt table testing

  17. INTERVENTIONS, MANAGEMENT and rehabilitation

  18. General Principles • Good doctor patient relationship • Treat patients with respect • Empathic listening • All treatment plans collaborative and tailored to the needs of individual patients

  19. TREATMENT OF SPECIFIC SYMPTOMS • Headache • Irritable Bowel Syndrome • Dizzyness • Depression • Sleep disturbance • Follow standard clinical practice • Physical treatments – eg TNS and Acupunture

  20. 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

  21. 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

  22. REHABILITATION • PACING • Graded Exercise • Couselling • Cognitive behaviour therapy

  23. SPECIAL AREAS

  24. children

  25. 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

  26. Prognosis • The evidence available suggests that children and young people are more likely to recover than adults.

  27. 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”

  28. 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

  29. Clinical Presentation • Loss of energy/fatigue • Cognitive problems • Disordered sleep patterns • Weight change • Gastro-intestinal disorder • Investigation similar as for adults

  30. 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

  31. 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

  32. 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

  33. 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

  34. SEVERELY AFFECTED

  35. 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

  36. 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)

  37. 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

  38. Management • Medication – value of liquid preparations • Referral • Diet • Hospitalisation • Respite • Caring for the Carers • Part of Long Term Conditions planning

  39. PROGNOSIS

  40. 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

  41. THE FUTURE

  42. 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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