“Exercise and ME/CFS – the evidence”
Watershed, Harbourside, Bristol 6.30 – 9.15 pm Feb 5th 2014.
Tickets are all sold. here on the ‘shop’ page.
This event has been approved for 2 CPD credits.
Enquiries to North Bristol FME/CFS Support Group call 0844 887 2475
We are very grateful to the Quartet Community Foundation for a very substantial grant contributing towards the cost of this event.
Many thanks to ME Research UK who have helped with expenses for Sue Waddle, their spokesperson, and many thanks to ME Association for help with expenses for their paediatric medical advisor Dr Nigel Speight and for Erinna Bowman from the London School of Hygiene and Tropical Medicine and the biobank project, which MEA has helped fund.
The ‘Exercise and ME/CFS – the evidence’ evening with Prof Mark VanNess at Bristol’s Watershed follows the day after his visit to Belfast to address MPs and medical professionals at Stormont. This is a unique opportunity in Bristol: to hear the latest evidence relating to the biological basis for fatigue and the consequences for people with ME or CFS of different kinds of exercise programmes. Dr VanNess has been involved in extensive research with Staci Stevens and Chris Snell at the Workwell Foundation in California (& the Pacific Fatigue Lab).
The role of exercise and activity management in ME and CFS has been a source of great controversy for many years – widely accepted as beneficial by many healthcare workers but questioned by many ME charities and patients who have personally suffered adverse consequences caused by overactivity. This work brings a breath of fresh air and objective scientific measurement into a field that has long been dominated by confusion and subjective impressions.
The Workwell’s two-day testing protocol is designed to objectively measure functional capacity and the symptom of post-exertional malaise in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). Using these discoveries they have also been able to develop therapeutic strategies to help patients. This is the first time that these discoveries will be explained in the UK by a member of their research team. In the fields of exercise science and medicine, cardiopulmonary exercise testing is considered the gold standard for measuring and evaluating fatigue.
In Bristol Prof VanNess will be joined by Dr Nigel Speight – a well known consultant paediatrician with decades of experience in helping children and young people with ME - and by Erinna Bowman a Research Fellow with the CURE-ME research team led by Dr Luis Nacul at the London School of Hygiene and Tropical Medicine. She will talk about their current research projects, for which they been awarded an approx £1,000,000 grant from the National Institutes of Health (USA), as well as speaking about their past work.
This event will be of interest to clinicians, general practitioners, paediatricians, doctors in training, counsellors, occupational therapists, physiotherapists, nurses, researchers, educators, patients, their families and carers and all involved in helping patients with ME and CFS.
About the speakers
“Understanding fatigue in ME/CFS: An exercise in objectivity”
Dr Mark VanNess PhD is a Scientific Advisory Committee Member at the Workwell Foundation in California, USA. He is Associate Professor in the department of Health, Exercise, and Sport Sciences at the University of the Pacific. He has a doctorate in neuroscience and has been involved in many published research projects, working alongside Staci Stevens, Chris Snell and others.
Dr VanNess began working on CFS in 1999. His main research interest is in the role of the autonomic nervous system in immune dysfunction. He also has a particular interest in the mechanisms that produce post-exertional malaise, especially as they contribute to physical and cognitive dysfunction.
Of their new study, published this summer, Staci Stevens says; it
“provides the CFS/ME community an objective, quantitative marker of post exertional malaise. To date, diagnosis has been qualitative based on a list of symptoms, resulting in wide variability in the patient population.”
More information on the Workwell research and some very good video explanations can be found here. The team also includes Dr Dan Peterson, who is one of the forefathers of ME and CFS research and treatment in the USA; since an epidemic affected his patients in Nevada in the 1980s.
How does this research help patients? The Workwell researchers main interest in the lab is to use standardized cardiopulmonary exercise testing to more clearly characterize “fatigue” in CFS/ME. They can use the post-exertional responses after an exercise test to clearly define the illness without the problems associated with waxing and waning of symptoms (fluctuations of symptom intensity). CPET is frequently used for measuring disability in various health conditions, but it has an additional and particular benefit for ME and CFS patients, since it can also be used to help patients establish an individual SAFE level of activity. It appears that many patients are actually living their lives and exercising at a level of activity which may continue to harm them and cause long term severe disability. As exercise physiologists, Dr VanNess and his colleagues are interested in the use of exercise training and energy conservation therapy as techniques to enhance the quality of life of patients and avoid symptom exacerbation associated with excessive aerobic activity.
In the UK ideas about exercise and ME /CFS have been coloured by exaggerated claims in the media about the results of the PACE Trial. Mark VanNess and his Workwell colleagues bring a breath of fresh air, objective measurement and science, to the confusion of subjective claims and counter claims about the role of exercise in the management of ME and CFS. See ME Research comment for interesting analysis of the PACE Trial.
“The Challenge of ME/CFS in children and young people.”
Dr Speight is currently a medical advisor for The ME Association, The 25% Group, TYMES Trust, and the MEA of Wales. He is widely considered to be the most knowledgeable and experienced ME consultant paediatrician in the UK. He has remained dedicated to working to protect children and their families from wrongful and illfounded care proceedings, sadly a job which continues to this day. In fact these cases are currently growing in frequency as a consequence of widespread misunderstandings caused by some of the advice in the NICE Guidelines.
He has also developed special interests in childhood asthma, food intolerance, child abuse and neglect, emotional and behavioural problems and ADHD. This breadth of involvement - both with cases of ME and with child abuse and neglect and emotional and behavioural problems – places him in a unique position in recognising when misguided accusations are being made against parents of children with ME and the children themselves.
He was on the Chief Medical Officer’s Working Party which reported in 2002 and also the College of Paediatrics Guidelines group. He gave evidence to the Gibson Inquiry and on three occasions has talked to the ME interest group at the Scottish Parliament. He was not involved in drawing up the NICE Guideline for ME.
More recently, along with 25 other specialists representing 13 countries, Dr Speight was a member of the International Consensus Panel which published the ‘Myalgic Encephalomyelitis: International Consensus Criteria’ 2011 for diagnosing and researching ME. This was a development from the Canadian Consensus Criteria. It is based on the most up-to-date international research and clinical experience which ‘strongly point to widespread inflammation and multisystemic neuropathology’ stressing that;
“Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome”.
Dr Speight has also contributed to “Myalgic Encephalomyelitis – Adult and Paediatric: International Consensus Primer for Medical Practitioners” edited by B Carruthers and M van de Sande and published in 2012. This explains that
“the criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions.”
There is a handout about Childhood ME written by Dr Nigel Speight here and a recent article Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Review of History, Clinical Features and Controversies. can be down loaded from this link www.sjimms.net
Erinna Bowmanis a Research Fellow and named researcher for the recent award of approx. £1,000,000 given to the team at the London School of Hygiene and Tropical Medicine by the The National Institutes of Health (USA). Dr Luis Nacul leads the CURE – ME team, which works to improve recognition, diagnosis and treatment of ME/CFS; from the National CFS/ME Observatory, which explored the impact on affected individuals, to the development of the UK’s first biobank of samples for ME/CFS research. They are now working to extend the biobank and to engage in immunological research, as well as establishing a network of international ME/CFS research groups, in Europe (Norway, Italy, Latvia) and South and North America.. The team will undertake a longitudinal study of clinical presentation, immune phenotype, gene expression and virus infection among ME/CFS patients and MS and population controls. Clinical samples will be collected for studies of NK cell function virology (herpesvirus infection), and gene expression and for banking as a resource for future ME/CFS research. Dr Eliana Lacerda one of the lead researchers on the project, said:
At least one in every 500 adults [0.2% or approx. 126,000 adults] in the UK is affected by ME/CFS at any one time, as well as a smaller but significant proportion of children. The NIH grant provides a huge boost to the Biobank, which will enable more research into the causes of ME/CFS and ultimately help those affected.
The team will analyse blood samples for NK cell phenotype and function, screen samples for evidence of herpesvirus infection and viral load, focusing on Epstein Barr virus (EBV), cytomegalovirus (CMV), and human herpesvirus-6 (HHV-6), describe clinical phenotype and fluctuations over time, and correlate the presence of symptoms and severity with markers of virus activity and immune function, and investigate gene expression profiles associated with ME/CFS and how they vary in relation to changes in disease severity, virus activity, NK cell function, and other markers of immune function.
This is thought to be the first longitudinal study of ME/CFS to incorporate both mild and severe cases, age, sex, and residence-matched Multiple Sclerosis (MS) and healthy controls, and to incorporate virological, immunological and gene expression data into the same study. It is expected that this work will contribute towards the identification of robust biomarkers which will allow clinicians to correlate ME/CFS phenotype (including clinical presentation, genetic, immune, and viral markers) with disease severity and prognosis and may reveal new options for interventions research.
This work is in line with other international research teams, including the Infection Associated ME/CFS team at Stanford University.