Experts in neurovirology, imaging and orthostatic intolerance will take the lead for the fourth annual UK CFS/M.E. Research Collaborative (CMRC) conference, which will this year be held in Bristol on Wednesday 13 and Thursday 14 September.
The National Institutes of Health (NIH)’s Dr Avindra Nath will talk about his work on neurovirology and infections of the nervous system.
Blogging recently about the work of the NIH, its Director, Dr Francis Collins, explained that Dr Nath is leading “an extremely detailed and comprehensive evaluation of several dozen people with CFS/ME, focusing on those whose symptoms can be clearly traced to an infectious-like illness and who have been sick for less than five years. These volunteers will undergo a comprehensive battery of tests, including blood draws and brain scans, to help researchers learn more about the clinical and biological features of this disease.”
Other presentations (titles – to be confirmed) include:
- autonomic intolerance by Dr Peter Rowe, John Hopkins Children's Centre
- imaging in research by Dr Matt Wall, Imanova, a translational research company that specialises in applying PET and MRI scanning techniques to improve drug development and health research
- pain and CFS/ME by Prof Maria Fitzgerald, University College London
- learning from other illness fields by Prof John Gallacher, Oxford University
and a talk by Prof Don Staines from Griffith University, Brisbane.
The conference programme – in draft – can be viewed, here.
Who can attend?
The two-day CMRC conference is open to professional and student researchers (undertaking a research associated programme at an academic institution).
Associate Members – that’s anyone with an interest in M.E. who isn’t a researcher – can attend on the first day of the conference.
It’s free to become an Associate Member of the CMRC – see ‘Becoming a member‘ in the Research section of our website and then download an application form.
Registration for the 2017 CMRC conference for Associate Members is £45. As the CMRC does not receive enough income to cover costs, it has to ask for this contribution, which is heavily subsidised to enable access to the conference for people with M.E.
If you are unable to meet the cost of the ticket but would still like to attend, please contact the CMRC (via Action for M.E.) to request a full/ partial waiver.
Grants for medical students
The ME Association will again be awarding up to 4 grants to medical students to help cover their costs of the registration fee, travel and accommodation at the conference. More details will follow in a separate website announcement in due course.
Previous conferences
Read and/or download reports of previous CMRC science conferences:
A number of patients and researchers are finding that the metabolic profile of a person with ME/CFS is so distinct and abnormal that it is diagnostic of the disease. The good news is that the abnormalities show up before the patient provokes PEM/PENE and causes harm. The information needed for effective day to day patient management and that illustrates the patients abnormal metabolic profile shows up without them exercising to a harmful level. In fact the typical patient is stopped from exercising after doing much less than they are doing in their “normal” day to day activities. All that the patient is required to do is to bike/treadmill until their body hits their aerobic zone (aerobic zone is at a lower HR than anaerobic zone). At the threshold to the aerobic zone, a persons body crossses over from fat burning to carbohydrate burning – this point can be seen by person conducting the test and the test stopped. Depending on disease severity the cross over may be reached in seconds. STOPPING the test the fat/carb burning cross over means that the test is not onerous for the patient. (Obviously the exertion of getting to the clinic is harmful for some patients and hence not recommended for all, but the actual test itself is less strenuous than what the patient is doing day to day). Most patients routinely are over doing activity and routinely exceeding their aerobic/anaerobic threshold. It is only once patients start continuously monitoring their heart rates that they realise jsut how, how excessive their day to day activity levels are. Most patients major frustration when they start HR monitoring is the “bloody” bleeping HR monitor- most struggle to stay under their anaerobic/aerobic threshold. Most patients also struggle to stay within 10/20% of their resting heart rate while resting. Given that Bristol appears to be the heartland of the anti-physiology/objective/scientific measurements land is there any way of introducing science into a talk? A poster showing the abnormal physiological pattern of people with ME/CFS? The advantages of a very short CPET/metabolic test to aerobic/anaerobic threshold – ie. both a real objective measure of disability and a means to guide improved quality of life? From a patient day to day management perspective no additional information is gained by continuing the test to patient exhaustion is non existent. Doing the standard test may be necessary for disability insurance but that is a separate issue. Doing the test to exhaustion will cause the patient to deteriorate and will provoke PEM/PENE, of potentially a very severe nature. The 2 day test quantifies the PEM/PENE whilst at the same time provoking a second layer of PEM/PENE. In summary is anyone able to run with this at the conference? Whet the researchers interest? Show that there is a safe means of quantifying disability and measuring physiological changes in health.
Hi Freda,
Thank you for your detailed comment. Dr Mark VanNess had been asked, we believe, to present at last year’s CMRC conference but unfortunately was unable. It would be useful to have had his perspective – and heard about any new research he is embarking upon – on CPET testing. Dr VanNess as I am sure you are aware created a lot of interest with his early work in this area and it would be good if he could attract more funding to be able to conduct similar experiments on larger cohorts. I’m not actually sure if anyone is currently working on CPET research in an attempt to replicate published studies, but I agree it is one area where more focus is needed.
I will draw Dr Shepherd’s attention to your comment and see if he has anything he’d like to add.
Thank you again.
Dear Freda,
Whilst I would agree that metabolic profiling is producing some very interesting information in ME/CFS – which is why the MEA Ramsay Research Fund is funding a major research study at Oxford that will involve metabolomics – we are not yet in a situation where these abnormalities have been properly replicated and could be used as a diagnostic test for ME/CFS
Booking speakers for international research meetings has to be done many months in advance and as you will see the programme for the 2017 CMRC conference is almost complete for this year
I am obviously well aware of the research on cardiopulmonary testing you refer to by Vanness et al and if you have a copy of the MEA purple book you will see that it is referred to in the clinical assessment section
Exercise physiology was covered at the 2016 CMRC conference and it is certainly a topic that we might well cover again at the 2018 conference – if we can get this American group to fit in with our dates
Dr Charles Shepherd
Hon Medical Adviser, MEA