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. 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