The MRC has recently announced its intention to allocate £1.5 million
for ME research .
"As part of its continuing commitment to the area, the MRC
will be making available up to £1.5M for new research into
the mechanisms of Chronic Fatigue Syndrome/Myalgic
Whilst any money which would be ring-fenced for ME research is to be
welcome it is not yet at all clear what type of research is going to be
accepted. For years patients and their carers have been calling for
biomedical research into causation to be funded for ME. So far all the
funding has gone into the behavioural model of ME which the vested
interests of the psychiatric lobby have orchestrated.
The MRC have been criticised in the past for not funding biomedical
research into ME – and for squandering over £5 million on the ludicrous
PACE trials. This criticism has been justified. The recent response to
Professor Malcolm Hooper  is evidence that this
criticism has not been addressed properly.
The actual announcement made by the MRC describes their new priorities
for research as being -
Most of these priorities seem to be symptoms and we wonder if this isn’t
being set up specifically to allow the psychiatrist lobby to continue to
control the research agenda.
Nothing in the MRC announcement seems to highlight or describe an
overarching strategy of research for ME.
The crucial statement seems to be this -
"The aim is to promote new and innovative partnerships
between researchers already working in the CFS/ME field and
those in associated areas, such as pain and fatigue. The aim
is also to encourage and support more high-quality CFS/ME
This would seem to be an alarming statement if the intention is to limit
the funding only to those who are already working with Chronic Fatigue
(essentially to those whom the MRC has previously funded or who have
been selected to be included in this expert panel).
Rather than specifying “pain and fatigue” we would have preferred the
statement to highlight virology and immunology.
Rather than limiting this to existing researchers we would have
preferred to attract new research blood to this area and to make it
attractive to new research institutions to carry out biomedical
We commented in our newsletters [3, 4] –
“Invest in ME take the position that any intention to bring together
the biological and psychological ME/CFS factions in order to
encourage the MRC to give money is misguided.”
The only strategy which makes any sense from a scientific, moral or
just viewpoint is to fund biomedical research into ME and treat ME
in the same way as cancer, Parkinson's, MS or any other mainstream
illness. Attempts by organisations or individuals to mix these
parallel worlds is consigning another generation of pwme and their
families to the medical scrapheap.
We should not accommodate the psychiatric view with biological view
of ME. There should be no attempts at mixing these up in the name of
having a balanced view.
We retain these views.
It remains to be seen if the sparse funding announced from the MRC will
be diverted to those on this panel who see the symptoms such as pain and
sleep to be a consequence of wrong illness beliefs or deconditioning –
whether those sitting on this
selected expert panel will be favoured by having their pet projects
accepted as “high-quality” by the MRC.
Another point which needs to be made
is that it is still unclear who peer-reviews the proposals for research
– another previous failing with the MRC as we well know that Dr Jonathan
Kerr’s high-class biomedical research proposals were vetoed by the
Wessely school’s influence in the MRC. Will requests for virological
research be assessed by virologists? Or will the psychiatric lobby still
be allowed to veto promising biomedical research
as has been the case in the past.
Remember the MRC statement from before (How does the MRC decide which
research proposals to fund?) -
"All proposals for MRC grant funding are assessed through a
two-stage process involving independent expert reviewers and
the MRC research boards/panels. The core assessment criteria
are the importance of the scientific questions being asked,
the research programme’s potential for advancing
biomedical science, and the justification for the
Yet every time Invest in ME have put a question to ministers about the
lack of funding for biomedical research a reply is returned from the MRC
stating that they do not use the term biomedical. It is also worthwhile
to remember that all of Dr Jonathan Kerr's invited grant applications
were turned down because they went to the neurological and mental health
board to be reviewed.
It has always been disingenuous of the MRC to state that they have
wanted high-quality research proposals when they rejected the single
most advanced research program (gene expression) which the UK has
produced until now.
It remains to be seen who reviews studies into immunology or virology
for example this time.
A glaring omission from this expert panel is the lack of a decision on a
standard diagnostic criteria to be used for diagnosis and research.
continual major failing of the MRC, beyond their failure to fund
biomedical research, has been their lack of any requirement to use
correct diagnostic criteria in any research related to ME. This has
allowed research to be funded which is flawed from the beginning as
patient cohorts participating in trials such as the PACE trials are
always of a heterogeneous variety – thus making the results completely
Of course for diagnosis of ME cohorts the Canadian Guidelines should be
used. This would ensure a well-defined homogeneous group of patients.
Professor Leonard Jason has already published research criteria 
based on the CG which could be used to standardise research.
If the MRC panel had had any vision then the decision on standrard
criteria to be used would have been taken already.
Until something better comes along the CG should be used and the MRC
really ought to have specified this.
There is no discussion of a diagnostic test such as was being discussed
by Dr Jonathan Kerr. This surely is a failing and ought to be of prime
interest for funding of new research. The IiME ME/CFS conferences have
highlighted the fact that some biomarkers are seen to exist already.
This statement may seem to be
pessimistic about the actual intentions with the MRC press release. But,
of course, we have been here before.
In 2003 the MRC published a summary
of their Advisory Group – the latterday version of their “expert panel”
In the section
New Research Directions for CFS/ME
documented in “Key ways forward arising out of the consultation
More research funding, properly directed;
More co-operation and collaboration between researchers,
care providers and patients, including those who are
Getting the priorities right – which for many means a
shift from psychological to biological and medical
An open debate on meanings and definitions;
Not one of these points has been delivered.
So there is obvious scepticism that
this recent announcement will actually deliver this time.
The latest incarnation of an MRC "expert panel" that was formed to look
at ME research has taken over two years to organise a few meetings and
to get to this stage of announcing the intent to allocate a tiny amount
of its total budget and put it toward ME research. There is no glory to
be claimed from this tardy process where ME patients are not truly
represented and where time has been wasted.
Did it require over two years with just a few meetings to get to this
decision to invite proposals for research into a collection of
symptoms? Of course it did not.
Incidentally, in that two years the WPI have performed ground-breaking
research leading to publication of the Science paper in 2009 on XMRV.
This has been another two years wasted where more lives are lost or
destroyed further, two years when something concrete could already have
been achieved in the UK with regard to funding of biomedical research.
We could have created a strategy for
ME/CFS research a long while ago which would have presented a long term
strategy and which could easily be tuned to developments in research and
We make these comments simply because they need to be made.
Our problem has never been with the
MRC in general – just their particular policies with regard to ME/CFS
It would be an unrepresentative and myopic commentator who would look at
the MRC decision to provide funds for ME research and simply state that
the MRC should be congratulated for agreeing to fund ME research.
What can be stated is that without continued education and awareness
campaigns from those advocates and organisations who have campaigned for
many years for a change in strategy, and without the efforts of the
biomedical researchers who have been presenting at IiME international
conferences then the MRC would unlikely be making any change in their
course of action.
It is also clear that without the vision and tenacity of the WPI in
breaking new ground and daring to challenge the barren research and
biased views of the establishment and the psychiatric lobby then we
would not be looking at any change.
We shall see how serious this MRC commitment is over time.
are happy to
support any genuine attempt to progress proper research into ME. We hope
to use our proposal for research facility (7) to apply
for research funding in the hope that funds really are available for
Let us hope that "the research into mechanisms of CFS/ME" (which more
ought to be termed "research into the biomedical mechanisms of ME/CFS") will
involve pure biomedical research using the proper diagnostic and
research criteria and that new and innovative proposals based on a wider
strategy of biomedical research are allowed to be considered properly.
Failure to do so will nullify any subsequent research which is given
Until that time we will continue to
observe the MRC’s actions, whilst at the same time advising that private
funding of biomedical research into ME/CFS will likely be the only sure way of
establishing high-quality research into ME/CFS. This research must be
biomedical research, the only sure way to resolve this disease.
If the MRC does not allow this funding to be used purely for proper
biomedical research and fails to fund bids from high-quality biomedical
then the prescient words of one of the speakers from an earlier IiME
conference will echo once again (“…the MRC will never
fund biomedical research…”).
The theme for our conference is case for clinical trials. It reflects
our view that translational biomedical research is perhaps the best way
forward now – allowing patients to participate in research and to have
treatments used/developed which can be passed on quickly and safely to allow patients
to reclaim their lives back.
Invest in ME
Registered UK Charity Nr. 1114035
PO BOX 561, Eastleigh SO50 0GQ,
The Way Forward for ME - A Case for Clinical Trials
6th International ME/CFS Conference
20th May 2011 Westminster, London