CGT GET Tegengeluid Persbericht Mount Sinai Conferentie 2013

Prof. Holgate, wiens onderzoek 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 hier).

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).

Keynote address

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.

In addition,

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.

Transformative technology

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.

http://www.actionforme.org.uk/get-informed/research/