In relation to the 3 key actions that need to occur in the UK -
These are the key action points from my 10 minute presentation
1 EDUCATION ON ME/CFS FOR ALL HEALTH PROFESSIONALS - AND OTHERS WHO NEED TO KNOW
This needs to occur at all levels in the medical hierarchy - undergraduate, postgraduate, clinicians, researchers - as well as for other health professionals, social workers, teachers etc
As far as medics are concerned, people need an early and accurate diagnosis - and to be managed according to individual circumstances. Long delays in making a diagnosis and misdiagnosis, as currently occur, are unacceptable.
Forward ME Group are very active here and have met with representatives from the GMC, Royal College of General Practitioners, Royal College of Child Health and Paediatrics, Chief Social Worker for Children and Families, DWP Benefit assessors etc to try and get the message across
It's not costly - it just needs the will to do something from the medical establishment and the Department of Health
2 THE NEED FOR A PROPERLY FUNDED UK BIOMEDICAL RESEARCH STRATEGY
We need - as identified in the Chief Medical Officer's Working Group Report almost 20 years ago - a co-ordinated research strategy that includes commissioned and directed research (ie state funded research)
Charity sector is doing an amazing job here in the UK by funding biomedical research (eg ME Biobank at Royal Free Hospital, raising over £400K for a clinical trial of rituximab) and helping to establish emerging centres of excellence in London (ie Biobank), Newcastle, Norwich and Oxford. But this cannot cannot just be left to ME/CFS charities to organise and fund.
We also need to follow suit, and link in with, the new National Institutes of Health initiatives to set up multidisciplinary and multicentres research centres in the USA
3 SAFE EFFECTIVE MANAGEMENT THAT IS AVAILABLE TO ALL - REGARDLESS OF AGE, SEVERITY AND LOCATION
NICE guideline review now sorted - mainly due to patient and charity pressure - but we will probably have to put up with the current NICE guideline, which is not fit for purpose, till publication of a new NICE guideline in October 2020
The negative side to the NHS hospital-based referral services/clinics for ME/CFS needs to be addressed:
- virtually no hospital based referral services in Northern Ireland, Scotland and Wales
- domiciliary services and in patient facilities almost non existent for the severely affected
- 25% in all- very few services for children and adolescents
- over simplistic 'one size fits all' approach to treatment, based on CBT and GET as recommended by NICE, has to end
Dr Charles Shepherd
Hon Medical Adviser, MEA