ME should be clear and obvious. This is not a new disease
and the suffering and devastating effects of the disease on
patients and their families has been chronicled for a
comparatively little biomedical research has been funded, no
joined-up thinking has been applied to the research and the
research landscape has remained bare - lacking agreed and
correct diagnostic criteria, lacking adequate funding and
lacking correct and rational information.
There must be
a better way forward.
comparative paucity of relevant and adequate research
elements several initiatives have been started in recent
times - some based on accumulated years of experience from
those researchers and clinicians who have doggedly remained
with this disease and stayed with the patients; some created
by those who have entered the field and brought with them
new ideas and new technologies to benefit research and
patient treatment; and some from new research spawned from
hope for new discoveries for this disease.
in the UK, the widely criticised and flawed PACE Trial  has wasted
several years and scarce resource funding there is perhaps a new era of
ME research finally beginning with the promise of a new way
reflected in the theme of the
8th Invest in ME International
ME Conference 2013 in London on 31st May - Mainstreaming ME
Research - an acceptance that, despite the past, research
into ME is now joining the mainstream research area
deserving of more funding and of the interest of top
biomedical research institutions. The IIMEC8 conference will
highlight the major biomedical research initiatives into ME
now taking place.
And it has
largely also patients who are forcing change and making
things happen - making a difference.
It For ME
has forced biomedical research into ME - by amazingly
positive efforts by people who are not interested in
complaining all the time without offering anything - but
instead put their thoughts and energy into imaginative ways
of crowd funding biomedical research - often pushing
themselves beyond their limits.
have been showing the real side of ME patients - people
wanting to get better and willing to be proactive in
The promise of
treatments developed from the exciting research at Haukeland
University Hospital in Bergen has generated campaigns by three
European ME Alliance members -
campaign in Norway has an ambitious target to raise 7
million Norwegian Kroner in 90 days.
establishment organisations have refused to perform proper
research into ME in the past this is now challenged by
increasingly more knowledgeable and determined patient
population, thanks to conferences and organisations
highlighting ME research and to the immediacy and effects of
social media. It was patients who thoroughly debunked the
hype of the PACE trial despite coordinated efforts by
establishment forces to encourage acceptance of it as valid
Last year the
Autoimmunity Working Group
(CAWG) meeting organised by Invest in ME and the Alison
Hunter Memorial Foundation of Australia, in London, brought
old and new researchers to the same table for two days of
Initiatives came from this meeting and,
perhaps, influenced the latest calls for research in the
latest MRC highlight notice  from last year
“There is now preliminary evidence supporting the view
that inflammatory mechanisms in the brain and spinal cord
may underlie the pathophysiology of some severe disease
CFS/ME phenotypes. Biobanks are now becoming available and
create a unique opportunity for interrogation.”
Immune dysregulation: There is evidence for a disturbance in
innate and adaptive immunity in CFS/ME including alterations
in cytokine profile, absolute and functional alterations in
T cells and NK cells and occurrence of autoantibodies and
allergic reactions that may explain some of the
manifestations such as fatigue and flu-like symptoms. A
number of infectious and environmental exposures have been
associated as triggering these changes.
- UK Medical Research Council
developing recognition of the real disease in ME needs to be
backed up with an appropriate response.
overwhelming need is for research - and essentially
biomedical research into ME.
But how can we
make more and quicker progress?
In the UK two
collaborative meetings for ME research are planned.
Science Media Centre and Professor Stephen Holgate and Dr
will host an afternoon event to publicise a
"research collaborative" for CFS -
We shall refer to this as the SMC collaborative. This
event on 22nd April will be organised by the
Science Media Centre in London.
later, in London, Invest in ME and the Alison Hunter
Memorial Foundation will convene a Biomedical Research into
ME Collaborative meeting -
Invited will be biomedical researchers from seven countries.
The SMC event
apparently follows on from the MRC CFS/ME panel which
was disbanded after three years, having held just a handful of
Invest in ME
has been invited to attend - due to the research
which the charity has proposed and funded - and, along with
other invitees, the charity received an email from Dr
Crawley and Professor Holgate containing information about
the SMC event.
The chair of
the SMC collaborative will be Professor Holgate - the deputy
chair will be Dr Esther Crawley. Charities such as AfME,
MEA, AYME and MER UK will have been involved in the planning
with Professor Holgate and Dr Crawley.
to the SMC event sent by Dr Crawley to invitees states -
addition to joining forces for raising the profile of
research and prioritising key areas for research, a UK
CFS/ME Research Collaborative could look to jointly fund
projects, capacity building (especially through involvement
of those not currently engaged in the field and looking to
support young scientists), encouraging targeted fund raising
as well as galvanising some clear directions of travel in
like creditable objectives.
Yet on closer
examination one finds that included in this SMC collaborative
there will also be many of those who believe ME is a
somatoform disorder. Included will be those behind the PACE
Trial, the SMILE study etc.
question might be posed exactly what are the "..clear
directions of travel in the field" for this SMC
collaborative to which Dr Crawley refers?
Holgate's reasoning behind this SMC collaborative is that -
collaborative, as well as an MRC Highlight Notice, has
helped to increasing MRC, Industry and Charity investment
into respiratory disease 4-fold over the last 5 years when
it was recognised that more needed to be done in this
principles for the success of this (respiratory research)
has been a willingness to join forces, support of ALL
types of research and ensuring high quality as judged
by robust peer review."
We have stated
before that it will be interesting to know how this can be
with transposing a model of research for respiratory disease
onto the ME landscape is, of course, that respiratory
disease is a universally accepted disease and is not questioned by an influential and controlling
ideology that continues to describe and treat ME
as a behavioural illness and refuses to accept that it is of
For many years
two opposing views of ME have been maintained - whether for
genuine reasons or for political and financial expediency.
This has pitted patients against establishment organisations
who deny this disease as real or of organic origin.
To discard the
politics and machinations that have gone on for a generation
with regard to this disease is certainly something we can
understand might be convenient - we have to move on from the
Yet the past
cannot be completely ignored if one is truly intent on
building a force for change and progress which includes
people who still hold ME to be a behavioural illness. A
great deal of re-invention of their positions by some
leading figures would need to be made before one can really
believe such a strategy would work.
The MRC CFS/ME panel achieved
little when compared to the amount of time it was meant to be active. More importantly three more
valuable years of opportunity were lost.
and issues which the MRC panel really should have
resolved have not been addressed - instead a void
remains where these elements for a sensible and scientific
strategy for research should have been agreed.
An example is
the lack of agreement (or even discussion ?) regarding a
standard diagnostic criteria set to define ME and
differentiate from Chronic Fatigue.
Canadian Consensus Criteria and International Criteria
accurately describe the symptoms of ME and therefore should
be the only ones used. Psychiatrists who purport to study ME
use the Oxford Criteria which simply describes fatigue. An
illness cannot be studied unless it is accurately defined.
After three years of existence of the MRC CFS/ME panel a
comparatively small amount of funding was awarded for
research which either did not cover ME or was not related to
establishment of causality. The current highlight notice
from the MRC  is more promising, if the
right type of researchers apply and get funding.
questionable area in this new SMC collaborative will be the
requirement for anyone participating to agree to support and
into CFS/ME including fatigue".
The only way
any organisation can be included in this SMC collaborative
is to sign up to a charter created by Professor Holgate, Dr
Crawley and presumably the four charities who have already
been instrumental in creation of this charter and can then
drive it. The letter from Dr Crawley includes the comment
that the charter -
"will lay out
the terms for membership that will strongly emphasise the
need for ALL types of high quality research (into
CFS) and a joined-up approach to deliver this", including
The full contents
of this charter - though known to some - will not be revealed until that April 22nd
written in the past that we feel it is impossible to marry the views
of those who believe in the deconditioning/behavioural and
wrong illness belief model of ME with those from the
biomedical side. The failed PACE Trial has demonstrably
proven that the behavioural view of ME cannot deliver and
should not continue to command more funding.
naturally leads to many questions about this SMC
collaborative and its proposed method of working. The
composition of the SMC collaborative includes
polarised views of ME so is it really possible, or wise, to
try to marry these widely differing views together? Why is a
charter actually required that all must sign up to, as
indicated by Dr Crawley?
mandatory charter reject or remove those who disagree with
the psychosocial side of the SMC collaborative? Who will
peer-review applications for funding from biomedical
researchers? What cohorts of patients will participate in
research and what diagnostic criteria will be used? Will
funding generated by this SMC collaborative be used to
create a strategy of biomedical research? Why is fatigue
necessary to be mentioned in the handouts?
questions which will hopefully be answered.
Maybe there is
another way - perhaps a better way forward for ME research.
there is a clear case to be made for segregating the biomedical from
the psychosocial here and now. This could then force a
separation of fatigue research from ME research and possibly
also settle on the correct taxonomy for this disease which
remains, to us, as myalgic encephalomyelitis.
Why not agree
on a strategy of biomedical research into ME with a
biomedical research collaborative into ME being formed
consisting of biomedical researchers, using resources and
facilities across continents - hooked up to share research
and data and crowd fund new research?
Such was the
meaning behind the
Research into ME Collaborative meeting
organised by Invest in ME and the Alison Hunter Memorial
Foundation to be held in London on 30th May. This meeting
follows on from the collaborative two-day Clinical
Autoimmunity Working Group meeting organised by the two
charities and held last year.
It aims to
interest other biomedical researchers to the field of
biomedical research into ME, assist those who are
undertaking research or planning research into ME, and look
for future collaborative projects and funding which could be
generated by new ideas.
future research into ME must be based on collaboration. But
it would seem quite meaningless to base the strategy on
those failed policies and directions of the past - which
have served patients so poorly and caused such suffering .
If we are
seriously to have a way forward for proper research into ME then we
need not just funding, but correctly defined cohorts,
standardisation on diagnostic criteria and a collaborative
of researchers who will not blur science with politics.
Such is the
meaning behind the OMI MERIT initiative  which is
actively proposing and initiating just these ideas with an
impressive array of research and technology being outlined.
The OMI MERIT
initiative is the closest we have seen to the ideal of what
a strategic approach to research and treatment should be.
The OMI MERIT
initiative proposes a new way of collaborating, of sharing
data, of using new technology to assist in diagnosis,
treatment, research. It proposes to crowd fund research into
ME and crowd source ideas and efforts and experiences.
These are the same goals of IiME.
It is why Dr
Andreas Kogelnik will be returning to the Invest in ME
conference in May to spearhead the theme of the conference -
Mainstreaming ME Research. It is why
Linda Tannenbaum from OMI will be speaking at the IiME
pre-conference dinner preceding the conference.
In fact there is the makings of a truly great collaborative - with OMI MERIT which has signatories from most biomedical projects currently taking place. Not forgetting the important work of the Enterovirus Research Foundation which concentrates on the role of enteroviruses in ME. To this we can add promising
initiatives such as the proposed Norwich research facility in UK,
and those in Norway and Sweden.
And this is
the meaning behind the IiME/AHMF BRMEC Biomedical Research
into ME Collaborative meeting in London in May.
collaboration is a necessity for research into ME.
ME needs a strategic approach - but it may be destined to
fail completely by attempting to establish the way forward
on foundations which include so much of what has been wrong
in the past.
Surely the way
forward ought to be -
establish homogeneous research cohorts
adopt and endorse the latest ICC or CCC criteria for ME
- for research and for diagnosis
separate research into fatigue and chronic fatigue from
establish transparent peer reviewing by professionals
with the relevant experience and background
This is the "clear
direction of travel" which this charity believes we
take - not just to discard the incorrect and deleterious
approach of the past but to discard that inadequate way of
thinking which has consigned a generation of ME patients and
their families to a neglected and dreadful existence.
collaborative is to be created of researchers and support
organisations then perhaps the only charter which would be
necessary is to agree to the above principles.
A clear break
from the past needs to be made and a new way forward taken
up - with international collaboration and transparent and
appropriate research into ME. This would be a clear differentiation
between objective and subjective research.
On 22 April
the Science Media Centre will hold an event to publicise the
launch of one collaborative which proposes to bring
together ALL research, 'including fatigue', into one hat - a
collaborative tent which only those organisations who sign
up to a pre-arranged charter will be able to join.
On 30th May
two small charities with a BIG cause will convene a
collaborative meeting which will be held in London bringing
together all of the major biomedical research into ME
initiatives in the world. The meeting is open to researchers
who will contribute to biomedical research into ME and will
be funded by the charities themselves.
We wish both
ventures well - Invest in ME supports all good research
initiatives which are truly meant to advance the cause of ME
patients and their families and lead to correct information
and treatment for the disease.
Indeed, we are
certain that the IiME/AHMF Collaborative meeting in London
in May will create ideas and support research which will
benefit those biomedical research initiatives that may
eventually emanate from the SMC collaborative and from those
organisations included who are genuinely interested in
biomedical research into ME.
The motives of
IiME and AHMF are to make rapid progress in translational
biomedical research into ME which will benefit ME patients
and their families and provide hope that something is being
done for them, that there truly is a promise of better times
ahead and not just further delaying tactics to waste more
there will be credible and positive change ahead.
Dickens' words would have described well the experiences of ME
patients and their families of the past, and their
aspirations for the future -
“I see a
beautiful city and a brilliant people rising from this
abyss, and, in their struggles to be truly free, in their
triumphs and defeats, through long years to come, I see the
evil of this time and of the previous time of which this is
the natural birth, gradually making expiation for itself and
Tale of Two Cities