Forgive the repeated extract I am having to ponder these minutes rather carefully today:
2.4 Prof Holgate said there is a fantastic emergence of new science and so now was a good time to research ME. The main problem for medicine these days were the non-communicable long term diseases and the linear relationship between cause and effect breaking down. There was a complex issue here; the models used until just a few years before by the pharmaceutical industry, academia and medicine no longer applied. There was now a need to focus on causative pathways – and in any one disease there can be many (eg in breast cancer there are 14). The only way to tackle this is to understand the pathways. To do this we need to get data on a large number of patients.
So in order to move away from managing the condition we need to look to new science and develop better understanding of causative pathways. Hmm...
Rather depends on how you view 'the' condition I suppose. Is it a single condition caused by various things and/or triggered by various things; or is it a collection of things - a syndrome - caused by a common collection of things. Or maybe that will all become more apparent with this kind of research.
Certainly agree - in my layperson's guise - with the breakdown in cause and effect. We have been faced for a very long time with 'management strategies' after all and a whole host of theory and bitty research.
But the landscape is changing. Large scale infrastructure and research projects are taking place. The initiative is there. ME is on the map. Still, it's all good stuff.
What were the models previously used [underlined]? Am I right in thinking these were to treat the symptoms and not the cause? Is that what he means do you think or is he hinting at certain [cough] psychological explanations and other 'stuff'?
Before we can understand the pathways - we must surely need to identify them [underlined] but I'm sure that's also what he means.
2.5 The Professor explained that the method would be to collect samples from about 5,000 patients and explore the cells, genes, genotypes, phenotypes etc. the patient was always the centre, and it would be a wonderful opportunity to use new computer technologies to understand the causative pathways and how they affect each patient. He said that if you know the pathway you know the way to deal with the disease, and that was the way to get the drugs industry involved. Realistically there is a need to prioritise research but there is also a need to collect and record phenotypes of individuals.
I know you guys covered some of this above so again sorry to if I am repetitive.
This is going to dwarf the ME Biobank. That particular project is looking at 500 samples within 5 years as a target (they have around 150 at present) and I can say that even with the NIH money (or a certain part of it) and off the top of my head without looking at notes - we are talking about around £300,000 to be where it is now i.e. 2 years in. So this ain't cheap brothers and sisters.
However, I wonder if the MRC with Holgate in support and in the driving seat is proposing future funding of the Biobank project. I mean this could be the most significant event. 5,000 samples. And I am only presuming they are blood. Imagine if he extends his thinking to post-mortem tissue. Flipping heck Batman
However samples are collected, let's assume it is through a long-term viable Biobank, then this is a lengthy project - depending on the amount of funding of course. It takes a long time to even assess and evaluate the patients, let alone collect and process samples which are stored at UCL.
5,000 samples. I mean holy crap. And once these samples were taken of course the patient is followed throughout - there are updates to clinical status etc. - and the samples themselves are ever available to others. It would constitute the
largest depository in the world.
Tie this in with the Disease Register and Post-mortem Tissue Bank (which is on hold due to priority being afforded the Biobank); and well...
we have infrastructure baby.
What they do with the samples and how they identify the pathways, well that's for the next stage. Getting this off the ground is going to take enormous organisation and effort.
Well certainly food for thought. Gods