Comments and feedback

Following on from Fatigue: My life, your research on 3 April 2019 we received some excellent feedback from the workshops and event...

How can we improve communication and signposting between clinicians, charities and support groups?

Make information accessible, leaflets/online/word of mouth
Seamless service – prevent multiple assessments – professionals to be well educated and correct referrals made, rather than bounced from service to service
Improve education
Referral pathways for health professionals into support charities
HealthWatch
Signpost people

Effective standardised assessment
Education – best way of teaching health professionals about fatigue
Impact of fatigue and ability to work
Patient involvement
Social acceptance – hidden illness – education
Terminology used “I’m tired” gets old quickly. New language to validate experiences
Timing of events/research should account for participant needs/lives (young families, e.g. 10:30am, live feeds)
Service evaluations – OT
Generally keep the momentum going on amount of research
Triggers/common denominators/how presents differently across condition/people
Treatments
Raise awareness
Collaborations across disease services
Patient involvement
Subtyping
What are the links between disease groups and fatigue?
Collaborative working across specialties - bench to bedside research
National centre for ME funded by Government (of MS)
Enterovirus Res/ Coxsackie B/EV 71
Treatment B12/thyroid
Cortisol levels
No more clinical abuse of patients
More research into mitochondria
To find the causes of various sub types of fatigue
Management of fatigue for patients
Research into wider normal society’s acceptance of invisible illness and how this affects individual’s acceptance of their condition
Understanding the impact of reduced social contact numbers on an individual

Impact of fatigue on physical functioning.
Impact of fatigue on cognition ‘brain fog’
Cause and effect research – possible prevention
Specific conditions e.g. stroke
Motivating younger people to attend fatigue events/research
Implementation
Understanding barriers to GP’s delivering/referring appropriately to fatigue services
Make sure asked about at GP appointments
Service evaluation
Multidisciplinary approach (inclusive of different conditions eg. include MS as well as CFS, use resources in clinic, no biomarker, common denominator)
Finding a way to measure fatigue
Better outcome measures
True prevalence of fatigue
Biomedical
Biomarkers
Define cohorts
Central resource centre open to everyone.
Exercise/diet
Hormonal/menopause/fatigue
More research with families
Education – more information for carers/families
PACE trial
Blood flow inflammation
Go beyond “normal parameters” – all normal effort. Backing/resources –Parliamentary debate (national policy)
Diagnostics – records – monitoring – specificity – education GP’s etc
Research into what formats work
Research into assistance dogs who can sense overworking/adrenaline

Create a generalised fatigue leaflet
Multi-disciplinary team
How can we raise the profile/change perceptions
Improve mechanism for dissemination of information
More support of fatigue support groups and breaking down the barriers of mistrust
Find common language/breaking down extremist
More active presence from research staff

How can the establishment of a patient participation group have a positive impact on fatigue?
How to improve others understanding of fatigue? Children, adults, HCPs, Can't relate without experiencing it, sharing dissemination of research, make booklets, acceptance
Use clinics
Social media
Charities
PPIE - VOICE global

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