Registration is now open for the 2018 UK CFS/M.E. Research Collaborative conference, which takes place at the Future Inn in Bristol on Wednesday 19 and Thursday 20 September.
The conference aims to increase collaboration between researchers in the M.E. field and with those from other research/illness areas.
It is a fantastic opportunity for researchers and patients to network and learn more about the latest published and unpublished research, meet potential collaborators and contribute to future developments.
Registration fees for people with M.E. and their carers start from £50 for a single day’s conference pass to £250 per person (or £405 per shared room) for a two-day conference pass including drinks reception, delegates dinner and overnight accommodation.
This year the event will be open to everyone for both days (previously the second day of the event was only open to researchers) and the evening dinner on day one is also available to patients and their carers.
As the CMRC does not receive enough income to cover the costs of the conference, it is asking for this contribution, which is heavily subsidised to enable access to the conference for people affected by M.E.
Book your place now via the CMRC Eventbee page
The programme is still being finalised, but confirmed speakers include:
- Dr Derya Unutmaz, National Institutes of Health, USA
- Prof Alain Moreau, University of Montreal, Canada
- Mark Jones, UCB Pharma
- Dr Luis Nacul, London School of Hygiene and Tropical Medicine
- Dr Eliana Lacerda, London School of Hygiene and Tropical Medicine; Chair, EUROMENE
- Dr Elisa Oltra, Universidad Católica de Valencia
- Cara Tomas, Newcastle University
- Prof Eleanor Riley, University of Edinburgh
- Prof Frances Williams, Kings College London
If you are a researcher and would like to submit an abstract for presentation at the conference, the deadline for submissions is Friday, 13 July, 2018. Submitted abstracts will be subject to peer review before acceptance. For more details see the CMRC Eventbee page.
Filming
With speakers' permission, we aim to film each presentation to broadcast live and/or upload as a recording following the conference. Please note that, due to the presentation of unpublished data, some speakers decline to be filmed. Details of livestreaming and/or filming will be made available nearer the time; keep an eye on our social media for announcements.
More information
The ME Association are members of the CMRC Executive along with Action for M.E. who also provide secretariat support. Details about the conference will be made available on our social media or you can find information on the CMRC Eventbee booking page.
May 2018
Interview with Prof Chris Ponting, the new Deputy Chair of the CMRC
Prof Chris Ponting is also Chair of Medical Bioinformatics at University of Edinburgh, and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine.
What inspired you to join the CMRC?
In a word: Simon. I’ve known [blogger and M.E. advocate] Simon McGrath more than a decade longer than the 20 years or so of his M.E. I have seen him on his better days and have been unable to speak with him on his worst. I have seen M.E. steal some of life’s ordinary hope and future. Simon has so much more to give in life than M.E. allows.
I started off my career as a physicist but then chose, instead, to try to use biomedical research to make a difference to people. It was a constant frustration that I couldn’t help Simon, and other people with M.E. Now is my chance.
All that I have seen or heard tells me that change is desperately needed and needed fast. Time will soon tell whether the Collaborative can help catalyse change.
A window of opportunity is currently open, and we have to take advantage of it before it slams shut, before the attention of decision-makers and grant-funders naturally turns to other areas.
This opportunity has been gained by the exceptional work of many people, but in my view most specifically [Unrest director] Jennifer Brea, in challenging how society perceives M.E.
Much work behind the scenes is pushing for change, or more precisely for the funds needed to deliver the robust, well-powered biomolecular research that might overturn prejudice and generate new hypotheses.
What is your view on the PACE trial and behavioural treatments for M.E. and/or CFS?
There have been several questions that I thought worth asking of the PACE trial team. So, early in May 2017 I sent through questions focused on the revised recovery criteria, and on the unblinded nature of the trial and its subjective outcome measures. Of course, I am disappointed not to have received any response.
The reanalysis of PACE data by Wilshire et al. shows that effects of CBT and GET are more modest than previously claimed. I agree with them that even these modest effects could be an unintended consequence of the unblinded trial design
What challenges are the CMRC facing right now?
To help to win a step change in M.E. funding; to gather a team of scientists who work with people with M.E. across disciplines to produce world-class science; and to create the “intellectually generous community sharing data, best practice and technologies” (alongside the Collaborative’s other recently announced values).
Our research should be curious, inclusive, questioning and open-minded, and we need to celebrate well-reasoned and evidence-based views. We need to listen. When we don’t know, we say so.
Prof Stephen Holgate is the right person to lead this: he founded the CMRC; he is he go-to person for funders; he is inclusive and generous; he is an internationally renowned clinician scientist.
Yes, we do not agree on everything, which is to be expected among researchers: “Disagreement is something normal,” the Dalai Lama said. It is not Prof Holgate’s fault that UK funders have not (yet!) funded M.E. research adequately.
Merryn Croft disproves the psychosocial theory of M.E.. It was determined at the inquest into her death that she was not mentally ill and had objective evidence of pathology to her nervous system. Her death is also a standing refutation to all those who conflate mental and physical illness – she was physically ill but NOT mentally ill; therefore there is a real distinction between mental and physical illness.
Yet Professor Stephen Holgate says of the FITNET trial, which is PACE revisited on child subjects and based on the psychosocial hypothesis of M.E., “CFS/ME is an important disabling condition. It has been chronically underfunded for years. Patients deserve high quality research like this study.” http://www.bristol.ac.uk/news/2016/october/fitnet-trial.html
It is good that Professor Ponting seems to have a definite conviction that M.E. is a physical, as oppose to mental, illness. Yet FITNET is precisely the kind of study that should be abandoned, just as PACE should be retracted. It is very difficult to see, therefore, how Professor Ponting can think that Professor Holgate is the right man to lead the CMRC. Professor Holgate has always liked to hunt with the hounds and run with the hare, and in supporting FITNET is showing precisely the “prejudice” that Professor Ponting rejects.
If there can be such an inconsistency at the heart of the CMRC, in that its founder and leader can apparently support both a psychological primary causal hypothesis, whilst arguing for the development of biomedical primary treatments, then what exactly is the change that Professor Ponting believes Professor Holgate is seeking to bring about? A sign that points in every direction is not pointing in any direction at all – a fact that will not fail to be noticed by cynical politicians and hard-nosed research funders.
Notwithstanding the sanguine attitude of the Dalai Lama to disagreement, it would be better to support another leader for the CMRC with whom there is no fundamental disagreement, remembering the Apostle Paul, “A little leaven leavens the whole lump”.