zich richt op de rol van infecties en het immuunsysteem in astma, is,
getuige onderstaande samenvatting van de AfME-conferentie, van mening
dat er bijna geen orgaan is dat niet beinvloed wordt in ME/CVS
dat we nagenoeg niets weten van de ziekte en dat dat dringend moet veranderen en
dat ME/CVS niet één ziekte is, maar dat onder die noemer diverse ziekten schuilgaan (zie ook
Our 2013 research conference
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 (CRMC).
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.
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.
pharmaceutical therapies are very costly, wasteful and time-consuming to produce:
Prof Holgate revealed that it takes 10 years and $1.4 billion 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 $23 million 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 subtypes, 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 will be available to watch on our
YouTube channel soon.