More than 70 patients, carers, health professionals and researchers, alongside staff and Trustees, attended our 2013 research conference and annual general meeting at Allen & Overy, One Bishops Square, London E1 6AD on Friday 8 November.
After being welcomed by Chair Alan Cook, delegates heard an inspiring keynote address from Prof Stephen Holgate, Chair of the UK CFS/M.E. Research Collaborative (CMRC).
Prof Holgate began by explaining that he would like to set the scene for M.E./CFS research in three parts: the origins of medicine, its evolution and new technology, and the unique opportunities these offer for M.E./CFS.
But first, he gave a brief overview of where we have been in the field of M.E./CFS research up to now, and how little contribution it has made to patient benefit. There is hardly an organ of the body not affected by this disease, and yet there is still an enormous lack of knowledge, disagreement over diagnostics, and perceptions of M.E./CFS vary enormously “We are bathing in a bath of ignorance,” said Prof Holgate. “Times have got to change.”
Origins of medicine
Prof Holgate told delegates that he lives very close to the village where Florence Nightingale – whose birthday was chosen as the day to mark M.E. Awareness Day – and he described how she changed the way we thought about medical data. Later, William Osler revolutionised healthcare with his 1892 textbook that combined pathology (signs of disease) with physiology (knowledge of the body) and emerging discoveries in biology, chemistry and physics.
Now we are able to effectively manage simple diseases using this approach – but new problems have since emerged. Non-communicable, chronic inflammatory and degenerative conditions, plus the public health crisis caused by increasingly toxic lifestyles, are enormously difficult and expensive to manage and research. In addition, pharmaceutical therapies are very costly, wasteful and time-consuming to produce: Prof Holgate revealed that it takes 10 years and $1.4billion to produce a single drug. Big drug companies such as Novartis and GlaxoSmithKline are downsizing, because the models they use are no longer effective.
The answers to these problems lie in transformative new technology, says Prof Holgate. Sequencing the human genome has enabled us to unlock the individual genes that cause individual diseases in individual cases. Sequencing a single person’s genes cost $23million two decades ago – now it can be done for less than $1,000.
What effect has this had on healthcare? It has led to what is called P4 medicine: personalised, predictive, preventative and participatory. Prof Holgate went onto show how this approach is already revolutionising breast cancer which, thanks to gene sequencing, has been revealed as not one homogenous condition, but 15 different sub-types, identifiable by their molecular signatures.
Crucially, this means that treatment can be targeted for each patient and the specific pathway their illness is taking. “This is all about the individual citizen,” said Prof Holgate. “It will lead to more effective, safer, cheaper treatments.”
“So, the challenge is not the technology, but how we integrate it,” he continued. “Our partners are no longer big drug companies, but Microsoft and other computer giants.”
What does this mean for M.E.?
Prof Holgate told delegates that M.E./CFS is not just a single disease, but a complex series of conditions that “it’s our job to unravel.” Again, he acknowledged the many difficulties faced by patients and researchers, but reiterated that it’s time for change – which is beginning to happen.
New scientists are being attracted into the field, the UK M.E./CFS biobank has been established, studies are starting to be done that investigate phenotyping using other fatigue illnesses as comparison. “It’s building towards a critical mass,” said Prof Holgate.
Offering real hope, he showed how the establishment of a respiratory disease research collaborative – on which the CMRC, launched in April, is based – led to a five-fold increase in research funding from the Medical Research Council. Prof Holgate firmly believes that the same, and more, is possible with the CMRC.
“By coming together as a group,” he concluded, “we can genuinely make a difference for people with M.E./CFS.”
Prof Holgate's presentation is available to watch on our YouTube channel.
Action for M.E. now and next
Following Prof Holgate's presentation, our CEO Sonya Chowdhury talked about the work of the charity, and our achievements over the past year. You can read all about these in our Trustee's annual report, and a film of Sonya's presentation is available to watch on our YouTube channel.
The next portion of the conference saw delegates hear presentations from the lead researchers on biomedical projects we are funding, including:
- Prof Derek Pheby, Buckinghamshire New University: UK M.E./CFS Disease Register
- Dr Luis Nacul: the UK’s first M.E./CFS biobank
- Prof Julia Newton, Newcastle University: understanding muscle dysfunction in M.E./CFS
- Dr Jason Ellis, Northumbria University: the role of sleep in M.E./CFS
- Prof Annalena Venneri, University of Sheffield: cognitive dyscuntion in M.E./CFS.
Films of each of these presentations are available to watch on our YouTube channel.
The last item on the programme was a roundtable discussion, with patients, carers and professionals asked to consider the question: "How can Action for M.E. further engage with our Supporting Members and people affected by M.E. to inform our research work?"
A number of suggestions were made, including:
- ensure that whatever we do is easily accessible to everyone
- set up a clinical advisory group
- hold a conference for people with M.E. without external input
- establish focus groups both on and offline.
Our CEO Sonya Chowdhury ended by thanking everyone for coming, and reminding them about our latest calling for proposals from UK researchers. In new move for Action for M.E., Supporting Members and donors will be able to vote for the project they want us to prioritise. "What we're trying to do is build a research community,"added Chair Alan Cook. "It feels like we're finally making progress."