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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.

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Presentation on theme: "SCOTTISH GOOD PRACTICE STATEMENT ON ME-CFS Dr Gregor Purdie GP and Clinical Lead for ME-CFS Dumfries and Galloway Health Board."— Presentation transcript:

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

2 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

3 Dr Gregor Purdie 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 Creatine Kinase

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 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 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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