Six web seminars by Prof Julia Newton of Newcastle University, UK are now available to view, hosted by the active Dutch organisation ME info – formerly ME/CVS Vereniging. These talks are produced under the auspices of ‘Science to Patients’, which is a Dutch government subsidized project, in which the gap between medical science and patients is bridged by inviting scientists to deliver short webinars on topics of concern to patients.
In the first, ‘Introduction – experience with ME’, Julia introduces her own story and discusses her journey into research in the field (Read the transcript Prof. Newton – experience with ME).
In the second, ‘Neurocognitive problems in ME’, she talks about the neurocognitive problems (memory, concentration etc) that have such a tremendous impact on patients’ everyday lives (read the transcript Prof. Newton – Neurocognitive problems).
In the third, ‘ME and the blood flow‘ she discusses blood flow with particular reference to the orthostatic intolerance found in many patients (read the transcript Prof. Newton – blood flow).
In the fourth, “Metabolism and muscle” she talks about acid accumulation in muscle and a variety of experiments to progress understanding of muscle dysfunction (read the transcript Prof. Newton – metabolism and muscle).
In the fifth, “ME and Sleep” she talks about sleep disorders in ME, bodily functions involved in sleep disorders, how to deal with sleeplessness and the cause of the extreme sweating at night which many ME patients experience. (read the transcript Prof. Newton – Sleep).
In the sixth, “Ageing and ME” she discusses which ME symptoms worsen when getting older, whether children, adults and elderly people with ME have different symptoms, and if there’s a difference of loss of memory due to age or due to ME (read the transcript Prof Newton – Ageing and ME).
ME info has also hosted 3 question and answer sessions with Prof Newton, and you can read the transcripts:
Prof. Newton Q&A session July 3rd 2014
Prof. Newton Q&A session June 20th 2014
Prof. Newton Q&A session June 6th 2014
Further webinars are to follow (see list). ME info has also put together a short biography of Julia (see below), which discusses her background and the support she has received from ME Research UK.
Short biography by ME info (ME/CVS Vereniging)
Professor Julia Newton is Clinical Professor of Ageing and Medicine, and Dean of Clinical Medicine, at Newcastle University. She is also the Associate Medical Director for Research in Newcastle Hospitals NHS Foundation Trust. Julia has a clinical practice that explores the role of autonomic dysfunction in patients with fatigue, including patients with chronic fatigue syndrome and fatigue associated chronic diseases. She has recently established a chronic fatigue CRESTA clinic at the Campus for Ageing & Vitality where for the first time patients with fatigue in chronic disease are being seen by a multi-disciplinary team. This is providing the clinical opportunity for patients to be seen by multi-disciplinary team with fatigue in MS and other chronic diseases, and tangible benefits have been seen in improving quality of life in the patients who have been seen. In terms of research she has a considerable track record nationally and internationally in the biological basis of fatigue, particularly focusing on the role of the autonomic nervous system in the manifestation of the symptom of fatigue. She has over £1 million of MRC funding and £750,000 of NIHR EME funding to explore fatigue pathogenesis in chronic fatigue syndrome and fatigue associated diseases. She is patron of a number of patient support groups and Medical Advisor to ME Research UK and POTS UK. She has eight PhD students and has published over 200 publications in peer-reviewed journals.
Her research program focuses upon the integrity of the autonomic nervous system in health and disease, specifically the role of autonomic dysfunction in the pathogenesis of fatigue and its clinical consequences, namely cognitive impairment. Examining the integrity of the ANS in humans is established in her physiology laboratory using relatively simple, inexpensive, non-invasive technologies that allow evaluation of a wide range of parameters that will within the foreseeable future (i.e. in my career life time) be readily transferable into therapeutic interventions for patients. Developing and validating novel methodologies to determine subtle abnormalities in autonomic dysfunction and its consequences is the major aim of her research. Recently ME Research UK awarded a large program grant to the researchers in Newcastle in 2014, and it was decided to initiate a specific project investigating housebound or bedbound individuals who are unable to attend clinics or take part in research projects (which often require hospital attendance and multiple visits).
The two-year project will be conducted day-to-day by the newly funded ME Research UK Research Associate, and will involve:
- Identification of severely affected ME/CFS patients from records of the Newcastle Clinical Service, local patient support groups including ME North East, and national registers or other sources. This will give an indication of how common severe ME/CFS is in this particular area of North-East England, and identify specific patients to be included in the investigation.
- Home visits on patients. During each visit, the ME Research UK Research Associate will undertake a series of specific assessments, including:
- Recording of demographic information, such as length of illness, mode of onset, provision of social care, receipt of benefits etc.
- Autonomic testing at rest to gauge the presence of autonomic nervous system dysfunction, which features prominently in ME/CFS patients generally.
- ME and CFS diagnostic criteria assessment, using the DePaul Symptom Questionnaire in collaboration with Prof. Leonard Jason at De Paul University in Chicago.
- Neurocognitive testing (e.g. memory, concentration and executive function) using software-based tools, since neurocognitive symptoms are some of the most common and worrying for ME/CFS patients.
- Assessments of muscle strength, using dynamometer and manual physical techniques.
- Activity monitoring using a 24-hour actimeter.
- Asessment of symptoms, including information from sleep and activity diaries.
- Recording of patients’ own experience of illness and treatment, and the impact of the disease.
This aim of this exploratory study is to raise the curtain on this severely overlooked group of patients, defining their clinical characteristics, gauging the level of unmet clinical need, and determining the relationship, if any, between autonomic nervous system dysfunction and other clinical variables. Subsequent progress will depend on what these investigations uncover and where the science leads. Crucially, however, a start will have been made on the serious scientific investigation of housebound and bedbound people with ME/CFS.
Among other multifarious tasks and functions, Julia is Clinical Professor of Ageing and Medicine, Institute for Ageing and Health, Newcastle University and Honorary Consultant Physician, Royal Victoria Infirmary and Fellow of the Royal College of Physicians.
Further reading
Prof Newton’s staff profile at University of Newcastle
Severely affected ME/CFS patients – a geographically defined study. Our newly funded investigation of housebound or bedbound patients.
£1 million of biomedical research. A special 32-page edition of our Breakthrough magazine reviewing ME Research UK’s projects.
MRC grant awards. Awards by the MRC in 2012 to Professor Julia Newton, Dr Wan Ng and colleagues at Newcastle University, UK.
