Tagged / fatigue

BU MSc Student, Sarah Clark, gives a presentation at EDS ECHO Fatigue Summit 0n 21st October

Sarah is giving a Community Voice presentation at the EDS ECHO Summit Series: Fatigue – Causes and Management at 4.32pm UK time in the “Exercise, Pacing and Diet” section, sharing some of her own tips and tricks for life managing several complex chronic health conditions.    This will be followed by participation in the live online Q&A session at approx 4.45 pm UK time.

 

Sarah, who has hypermobile Ehlers-Danlos syndrome, is a Masters student at BU studying Clinical and Developmental Neuropsychology.  Sarah sits as a patient expert in the EDS International Consortium, Psychiatric and Psychological Aspects Working Group.

Sarah presented her BMJ paper “Help me trust you after my misdiagnosis” at The EDS Global Learning Conference in Dublin in August.

Sarah was diagnosed in May 2022 with Autism spectrum condition, a realisation she only made thanks to attending the autism lectures on her MSc course here at BU!  She recently completed her qualitative MSc Research Project, supervised by Dr Emily Arden-Close, on “What are the daily experiences of autistic people living with hEDS?” and has just started working on writing her dissertation up for submission to a journal.

Sarah is studying part-time at BU due to the time-consuming nature of managing several complex conditions. But alongside managing her wellbeing, Sarah regularly engages in public awareness work, volunteering and charity fundraising work. She is also a keen photographer, writer and yogi and was featured in Hotpod Yoga’s Move with Purpose Campaign recently where she talked about her late-autism diagnosis: https://hotpodyoga.com/move-with-purpose/

Sarah is hugely grateful to the BU Community for the support and encouragement she’s had over the past few years which has allowed her to make great leaps in improving her own health and wellbeing, as well as giving others hope.  You can read more about Sarah’s inspirational journey on her website.

 

BU Briefing – Fatigue management programme for people with multiple sclerosis

Our BU briefing papers are designed to make our research outputs accessible and easily digestible so that our research findings can quickly be applied – whether to society, culture, public policy, services, the environment or to improve quality of life. They have been created to highlight research findings and their potential impact within their field. 

The manualised group-based programme called FACETS (Fatigue: Applying Cognitive behavioural and Energy effectiveness Techniques to lifeStyle) is a conceptual framework integrating elements from cognitive behavioural, social-cognitive, energy effectiveness, self-management and self-efficacy theories. The aim of the intervention is to help people with multiple sclerosis (MS) normalise their fatigue experiences, learn helpful ways of thinking about fatigue and use available energy more effectively.

This paper presents the results from one year follow-up data obtained from a pragmatic three-centre trial of FACETS.

Click here to read the briefing paper.

For more information about the research, contact Professor Peter Thomas at pthomas@bournemouth.ac.uk or Roger Baker at rbaker@bournemouth.ac.uk.
To find out how your research output could be turned into a BU Briefing, contact research@bournemouth.ac.uk.

Research within the Bournemouth University Clinical Research Unit (BUCRU)

Funding opportunities

In previous blogs we have described how BUCRU can help in developing grant applications. In this blog we describe some of the funded projects we are involved in.

BUCRU led research

Fatigue management in multiple sclerosis (MS):  We have just completed a multi-centre randomised trial of a cognitive behavioural approach to fatigue management in people with multiple sclerosis1. This project was funded by the MS Society (http://www.mssociety.org.uk).

Improving activity and wellbeing in people with MS: We are just starting a MS Society funded pilot study to look at the Nintendo Wii home gaming system as a method of helping people with MS increase their activity levels and wellbeing.

Systematic review of psychological interventions for people with MS: A small grant to update our existing Cochrane review2

BUCRU collaborative projects

IDvIP: A National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) (http://www.ccf.nihr.ac.uk/RfPB/Pages/home.aspx) funded project. This is a multi-centre trial comparing 2 methods of pain relief for women in labour; diamorphine and pethidine3. The Chief Investigator is a Consultant in one of the local hospitals and a member of the Bournemouth University Visiting Faculty. BUCRU staff were involved in the design of the study, applying for the grant, data management, statistical analysis and interpretation, and advice on project management.*

WEIGHTED: A small grant from the College of Emergency Medicine held by a local Consultant/ member of the Visiting Faculty. This study is about to start and aims to develop a robust method of estimating the weight of patients attending a hospital emergency department. Many patients require a weight dependent dose of potentially life saving medication, but are too ill to be actually weighed.  BUCRU were involved in designing the study and securing funding, and will be involved in ongoing advice on project and data management, statistical analysis and interpretation.

PEARLS: A large multi-centre trial of training maternity staff in assessing and repairing tears to the perineum acquired during labour and delievery4. This project is funded by the Health Foundation (http://www.health.org.uk) and run under the auspices of the Royal College of Midwives. BUCRU has been involved in data management, statistical analysis and interpretation.

PREVIEW: A pilot randomised trial comparing two methods of looking after tears to the perineum. The Chief Investigator is based in Birmingham, and the study is funded by the NIHR RfPB funding scheme. This study has recently started, and BUCRU was involved in the design of the study and the funding application. Further involvement will be in advising on project management, data management and statistical analysis.

Clinical Doctoral Research Fellowship: (http://www.nihrtcc.nhs.uk). Award held by BU and won by a radiographer based at the Anglo-European College of Chiropractic. The project involves tracking and measuring spinal motion. The research may have important implications in diagnosing people with chronic lower back pain. BUCRU were involved in the study design and funding application, and 2 members of staff are supervisors for her PhD.

Contact us:

In the first instance please contact

Louise Ward (administrator):

Bournemouth University Clinical Research Unit

R505 Royal London House

Christchurch Road

Bournemouth BH1 3LT

BUCRU@bournemouth.ac.uk

Tel: 01202 961939

 http://blogs.bournemouth.ac.uk/bucru/

1 Thomas, P.W., Thomas, S., Kersten, P., Jones, R., Nock, A., Slingsby, V., et al., 2010. Multi-centre parallel arm randomised controlled trial to assess the effectiveness and cost-effectiveness of a group-based cognitive behavioural appoach to managing fatigue in people with multiple sclerosis. BMC Neurology, 10:43

2 Thomas, P.W., Thomas, S., Hillier, C., Galvin, K., and Baker, R. (2006). Psychological interventions for multiple sclerosis. The Cochrane Database of Systematic Reviews (Vol. Issue 1, pp. Issue 1. Art. No.: CD004431. DOI: 10.1002/14651858.CD004431.pub2): John Wiley and Sons, Ltd.

3 Wee, M.Y.K., Tuckey, J.P., Thomas, P., Burnard, S. 2011. The IDvIP Trial: A two-centre randomized double-blind controlled trial comparing intramuscular diamorphine and intramuscular pethidine for labour analgesia. BMC Pregnancy and Childbirth, 11: 51

4 Bick, D.E., Kettle, C., MacDonald, S., Thomas, P.W., Hill, R.K., Ismail, K.. 2010. PErineal Assessment and Repair Longitudinal Study (PEARLS): protocol for a matched pair cluster trial. BMC Pregnancy and Childbirth, 10:10.