by CFS/ME Northern Clinical Network on October 7, 2014
BY John Allen and Costanzo Di Maria
Microvascular Diagnostics Service, Freeman Hospital, Newcastle-upon-Tyne
The Microvascular Diagnostics Service (part of the Clinical Measurement and Engineering Unit) at Freeman Hospital, Newcastle-upon-Tyne, is a leading clinical microvascular assessment centre in the UK. Much of the work undertaken currently is in the assessment of the structure and function of the small blood vessels and surrounding tissues in the context of connective tissue diseases. Our group is also very active in research and we are committed at the development of novel optical diagnostic techniques for a variety of clinical applications.
Lately, we have worked on two pilot projects – partially supported by the “Chronic Fatigue Syndrome and Myalgic Encephalomyelitis Northern Clinical Network” – to explore the utility of novel vascular optical techniques in patients with chronic fatigue syndrome (CFS), in collaboration with Prof Julia Newton – Dean of Clinical Medicine, Faculty of Medical Sciences, Newcastle University. One of these projects concerned with an assessment of peripheral pulse characteristics in patients during tilt testing; the other was an assessment of tissue tryptophan using non-invasive skin fluorescence measurements.
Assessment of peripheral pulse characteristics in CFS
Orthostatic intolerance is a common symptom in CFS and several studies have reported abnormalities of the autonomic nervous system in patients with CFS. Our group at Freeman Hospital has carried out a pilot study investigating a novel optical technique for the assessment of peripheral pulse characteristics on orthostasis. The technology employed is called photoplethysmography (PPG) and is able to measure the pulse non-invasively as light is scattered back by the amount of blood red cells at the measurement site. We used six PPG probes lightly clipped to the right and left ear lobes, index fingers, and great toes. The pulses were initially recorded at baseline – patient lying supine on a bed – and subsequently on orthostasis, tilting the bed to 70% head-up. Measurements were performed on a group of 28 participants, including 14 CFS patients and 14 healthy controls. We developed an index to quantify the change, between baseline and orthostasis, in the time taken for the blood from the heart to reach the peripheral measurement sites. This index was found to be lower in patients with CFS as compared to healthy controls, giving some evidence that CFS patients can have a reduced adaptation to the postural change. The difficulties in recognising CFS are well known and the promising results from this pilot study could help develop a more suitable diagnostic biomarker.
The outcome of this research was published as a peer-reviewed article in Physiological Measurement (volume 33, page 231-241) where it was also shortlisted as one of its six best papers published in 2012. It was also presented at the IPEM Cerebral Haemodynamics Conference 2011 held in London, and at the International Conference in Medical Physics 2013 held in Brighton – where it was awarded second prize in the poster presentation competition.
Non-invasive skin fluorescence measurements in CFS
Alterations in the level of the amino acid tryptophan have been associated with chronic fatigue. Measuring tryptophan could therefore be helpful in establishing a diagnosis in patients suspected of having CFS, and could also have potential for assessing response to therapy. Tryptophan, however, is not easy to measure in a routine clinical setting as it can require the use of blood or tissue samples. Ideally, a non-invasive and quick approach is needed instead for clinic. One such technique is fluorescence spectroscopy (FS) which can enable an optical biopsy and measure the amount of the different contents (referred to as fluorophores) in the measurement tissue, including tryptophan and the connective tissue collagen. Tissue fluorophores have specific fluorescence signatures with signal intensity (‘how much they glow’) relating to their concentration level. We used an FS measurement system for in-vivo skin assessment and developed a clinical measurement protocol specific to CFS, including the development of dedicated analysis software. The aim of this project was to determine the potential diagnostic value of FS measurements in chronic fatigue. Thirty-two subjects were recruited (with 12 healthy controls, age- and sex-matched to 20 patients) with FS measurements made from the skin surface at four body sites (hand, arm, chest, and foot). Overall, there were no clear differences in tryptophan fluorescence across the measurement sites between CFS patients and controls.
Serendipitously however, the collagen fluorescence score (which quantifies the amount of connective tissue) was found to be higher in the CFS patient group, although to borderline statistical significance.
Overall, the project was a useful pilot study and much ground was covered in the development work. The initial results hold promise for further developing the test and for its assessment in a larger group and with more focus on collagen rather than tryptophan. The research is currently being written up as a peer-reviewed paper which we aim to publish in a suitable scientific journal in the coming months.
We would like to thank the CFS ME Northern Clinical Network for having supported this research. They provided resources to purchase the tilt bed and attend the International Conference in Medical Physics 2013 in Brighton, and to fund a part-time Research Associate who developed the analysis software for the fluorescence spectroscopy study.
by CFS/ME Northern Clinical Network on August 6, 2014
GP Training: Medically Unexplained Symptoms
Advance notice of an exciting training opportunity happening on the 15th and 16th of October as part of a joint venture between University of Northumbria and the Centre of Academic Primary Care at the University of Aberdeen. Venue to be confirmed, but it will be Newcastle close to city centre. This is a free, evidence based training for GPs giving them skills to deal with MUS. See link below for research background.
The training will comprise 1.5 training days in October with one half day follow up, date to be arranged with group. All training can be counted for CPD. It will share recent knowledge about the biological and psychological processes involved in MUS; describe skills for recognising MUS; teach ways of explaining MUS to patients in a manner which can lead to constructive action. The ultimate aim is to improve GPs skills in the management of patients with MUS in a primary care setting’
The training will be delivered by Dr Chris Burton, senior lecturer in Primary Care at the University of Aberdeen and by Dr Vincent Deary, Senior Lecturer in Psychology at the University of Northumbria. Dr Burton researches recently edited “the ABC of Medically Unexplained Symptoms”; Dr Deary has been researching and treating MUS for many years and contributed chapters to the ABC book.
If you are interested in attending, please get in contact with Vincent Deary via Vincent.email@example.com.
by CFS/ME Northern Clinical Network on August 19, 2013
Jessica Bavinton provides an update from the first part of a GET training course with CFS/ME specialists in the North East.
We recently returned from a training course we provided to NHS employees in the north East of England. Over the course of 2 days, the course, led by Jessica Bavinton, provided NHS staff from across several different disciplines, including Physiotherapy, Occupational Therapy and Psychology, the opportunity to gain an insight into the concept of Graded Exercise Therapy, and its use in practise.
The course attendees also had the opportunity to gain valuable learnings by speaking via video conference directly to a past patient of Jessica’s who had previously suffered from Chronic Fatigue Syndrome, and who’s life has been turned around by the implementation of a Graded Exercise Therapy programme. Many of those attending the course had little or no previous experience with Graded Exercise Therapy, and the majority commented at the end of the course how confident they were to immediately start implementing some of the concepts and theories they’d learned on the course.
Confidence levels in the use of Graded Exercise Therapy went from an average of 4.6 out of 10 before the course started to 8 out of 10 by the end of the course! A further day of training is scheduled for November 2013, where all the course attendees will return to share and discuss their experiences and findings with the use of Graded Exercise Therapy in their work since their two days of training.
Contact Jessica and Vitality 360 via http://vitality360.co.uk.
by CFS/ME Northern Clinical Network on May 9, 2013
The North East Shared Decision Making Community of Interest serves as a forum for discussion, debate and sharing of experiences relating to shared decision making (SDM) and self-management support.
Role and Purpose
The Community of Interest was set up to build support for shared decision making and to provide a stimulus for widening interest in, and implementation of, SDM across North East England. We have adopted a bottom up approach to formation of our network to ensure that our aims, objectives and direction of travel are co-produced by the community as a whole. Broadly, the community of interest intends to provide a forum for members to:
share experiences; discuss, debate, question; promote exemplar best practice; gain knowledge and skills within a ‘safe’ environment; increase organisational and clinical engagement;support clinical implementation; nurture clinical and organisational champions.
In essence, we aim to create a social movement, firstly locally (and then scaling upwards) to challenge the status quo. We seek to draw on the existing evidence base and our skills, knowledge and experience locally, to raise the profile of shared decision making, to increase organisational and clinical engagement, and to support clinical implementation. We also intend to stimulate and support dialogue with the public, patients and carers across the North East to share and inform our work.
by CFS/ME Northern Clinical Network on April 8, 2013
For enquiries relating to the Northern CFS/ME Clinical Network, please email firstname.lastname@example.org or phone 0191 210 6446.
The postal address is Waterfront 4, Goldcrest Way, Newcastle upon Tyne NE15 8NY.
by CFS/ME Northern Clinical Network on February 21, 2013
In September 2013, I”m going to climb Mount Kilimanjaro for the most amazing charity, Hope for Children. Between now and September, I need to fundraise £2,650.00.
I’m doing this for the amazing university charity (www.hope-for-children.org) but I’m also doing it for all my AYME girls and ME sufferers. This is a massive inspiration for me to prove that even after going through ME we can still do the most incredible things.
People can donate to my Just Giving page: www.hopeheroes.org/ava_melville
Please spread the word among staff, neighbours and friends ( a far as possible ) it really is for an amazing cause. I think I’ve gone completely crazy but I just couldn’t turn down this incredible opportunity to challenge myself, raise money for charity and to inspire other ME sufferers that we can still do incredible things!
Please donate, please spread the word and help me to do something amazing this summer!
by CFS/ME Northern Clinical Network on February 11, 2013
I have used the ActiveME app for 7 months, it has been very helpful in producing a diary of data to refer to, and being able to compare days or weeks of sleeping, resting, low and high energy activity.
Due to struggling with sleep I find the app is particularly useful at keeping sleep pattern information. With the PDF documents it creates I show a physiotherapist how my symptoms are affecting sleeping and overall activity levels. Pacing is very important but often difficult for me to find the right balance, the app has made me think more about when are the most appropriate times to rest or commit to a high activity task.
Unfortunately the app can’t make me feel better however it does help me pace and show a snippet of my health which can be added to medical records.
Thanks to a service user for writing us this piece about the ActiveME iPhone app for CFS/ME which recently won an NHS Innovations North Bright Ideas Award
by CFS/ME Northern Clinical Network on January 2, 2013
By Royal Appointment…
AYME wins Queen’s Diamond Jubilee Award for volunteering.
AYME is one of sixty organisations to be awarded the prestigious Queen’s Diamond Jubilee Volunteering Award 2012. The Cabinet Office and Buckingham Palace said AYME has been chosen for harnessing the hard work, commitment and generosity of volunteers to improve the lives of children and young people with the chronic debilitating condition ME/CFS.
We are absolutely delighted to have won The Queen’s Diamond Jubilee Volunteering Award 2012 in recognition of the amazing contribution that our volunteers make to the lives of children, young people and their families affected by ME/CFS.
This enormous honour recognises the excellent job that our volunteers do; they really are an intrinsic and valued part of AYME.
Volunteers have been a core part of AYME since it was established in 1996, and they continue to work tirelessly to ensure the charity offers the vital services needed by so many young people and their families.
Mary-Jane Willows, AYME’s CEO.
by CFS/ME Northern Clinical Network on November 15, 2012
Zoe Gotts, PhD Student, Northumbria Centre for Sleep Research (NCSR)
This is a really exciting time to be a PhD student working in Chronic Fatigue Syndrome (CFS/ME). When I embarked on my research I really wanted to set about answering the questions that I believe are fundamental to our understanding of the problems experienced by those with CFS/ME and working in the Northumbria Centre for Sleep Research (NCSR) meant I could look more closely at the role of sleep in this severe and debilitating condition. Sleep is a significant problem in the lives of people with CFS/ME and sleep problems can help to maintain and even exacerbate existing symptoms. Until now, no-one has studied the precise relationship between sleep and daytime fatigue in a systematic way, which means this area still remains very unclear and under-researched.
In International M.E. Awareness week in May, my PhD research took a new turn. I was delighted to hear that we had been awarded a grant from Action for M.E. We were one of three biomedical pilot research projects to receive an award and the funding meant we could embark upon the 18-month study that we had planned for – the most detailed examination of sleep and hormonal functioning ever attempted in a CFS/ME population.
I am currently in the first stage of the project which involves interviewing people with CFS/ME about their sleep. This has been very enlightening for me to be able listen to patient’s experiences of their sleep and gradually build up a picture of common patterns or disturbances. I am now very excited and also fortunate to have the opportunity to go onto examine sleep from several angles in CFS/ME patients. The sleep assessments will commence in the New Year and we will be monitoring sleep for three nights using wireless sleep equipment in patients’ own homes. Levels of the hormone salivary cortisol will also be assessed upon waking and at points throughout the day.
Despite my enthusiasm to get started with the assessments, this is a very large study to take on within the time constraints of a PhD, but I am fortunate to have an excellent team of experts on board to help; Dr Jason Ellis (Director, NCSR and Consultant Sleep Specialist under Neurology, RVI), Dr Vincent Deary (Education Lead, Northern CFS/ME Clinical Network), Dr Mark Wetherell (Associate Director, NCSR and Psychobiologist) and of course Professor Julia Newton (consultant physician, RVI) who was also awarded one of the Action for M.E. grants for high quality research into understanding the muscle abnormalities that occur in people with CFS/ME. I have the best possible team behind me on this really interesting project. A project that not only will help us to establish a gold standard for how this kind of assessment should be done, but also improve our understanding and treatment of what remains a very poorly understood condition.
Northumbria Centre for Sleep Research (NCSR)
You can follow us on Twitter: @NCSR_Sleep
or Visit our Facebook Page: The Northumbria Centre for Sleep Research http://www.facebook.com/#!/pages/Northumbria-Centre-for-Sleep-Research/121428357921523?fref=ts
You can also keep up to date with the ongoing research into CFS/ME by visiting the CFS/ME Research Newcastle Facebook Page: http://www.facebook.com/#!/pages/ME-CFS-Research-Newcastle/526359017390431?fref=ts
by CFS/ME Northern Clinical Network on October 10, 2012
Over 500 copies of the ActiveME smartphone app that we developed with Dr Esther Crawley and her team in the South West have been downloaded.
An app is a piece of software that does a single job (or maybe a couple of jobs) that can ‘play nicely’ (thanks Rob Dyke for this definition) with other bits of software.
Most commonly, we recognise the term ‘app’ from handheld smartphones or tablets. And there are thousands of apps out there and a growing choice for people utilising them in the management of fatigue.
Recognising the research in fatigue, sleep, movement and pharmacy that is happening in the North East, the clinical network is a partner in putting together an event on 28 November at The National Glass Centre in Sunderland.
The aim is to connect practitioners who have an app idea (and I have growing evidence that many do!) with software developers who can help them take it forward.
World class software innovation inspired by world class research, all to benefit patients and their families.
Booking is at www.worldclassinnovation.eventbrite.co.uk.
Hope to see you there.