On 16 September 2013 Bristol University
issued a press release  which announced a grant of £1.2 million for Chronic Fatigue
The grant to two researchers included
one to Dr Esther Crawley - for research that seems to be effectively
performing a PACE trial on children.
“The five-year study entitled
‘Investigating the treatment of paediatric chronic fatigue syndrome or
myalgic encephalomyelitis (CFS/ME) has been awarded NIHR funding
of over £864,000.”
“Dr Simon Collin, Research Fellow also
in the School of Social and Community Medicine, will lead the first
study of its kind to investigate CFS/ME in primary and
secondary care in England. He will use data from the Clinical Practice
Research Datalink (CPRD) to obtain an up-to-date estimate of the number of
adults diagnosed with CFS/ME by GPs in England. Dr Collin will
collect data from NHS specialist services for adults with CFS/ME,
document the different approaches to treatment and investigate long-term
“The three-year study entitled ‘CFS in
the NHS: diagnosis of Chronic Fatigue Syndrome in primary care and
outcomes after treatment by specialist services’ has been awarded
NIHR funding of £321,861.”
After the IIMEC8 conference and the Biomedical Research into ME
Collaborative research meeting in London in May there was a real sense
of ME entering into mainstream research with new interest from new
researchers and focus on collaboration.
To hear of this massive amount
of funding to one area, graded exercise - this time on children - is
disappointing to say the least and indicates that nothing has been learned from the
flawed and non-productive debacle of the PACE trial.
Bristol University still uses the prevalence figures
of 600 000 in the press release - an issue that was debated at the MRC/SMC collaborative grouping, of which Dr Crawley is vice chairman.
minutes of that group from 19 July 2013 state that “Charities have met
to discuss the information in future press releases re prevalence. This
is still being progressed.”
There seems to be no shortage of public funding for GET related studies
despite £5 million being spent on the PACE trial which showed no
objective improvements in patient outcomes and is clouded in controversy
about methods used and claims being made .
By now it ought to be self-evident that children should not be coerced into graded exercise when they are ill
and unable to attend school. This approach can lead to a great deal of
harm - not just for the child but for the whole family.
Even though Invest in ME is not a
children’s charity we are contacted by families in distress due to
pressures being put on their children to attend school or to perform activities
beyond their capabilities due to the effects of ME.
This often leads to very difficult
family situations and instead of listening to and believing the child
parents are wrongly led to believe that they are doing the right thing
by following a set programme.
By the time families realise this is the wrong approach it may be too
late and the child’s condition has deteriorated and the families may
even break up as a result.
studies are welcomed but one has to be careful as GPs are known to be
very poor at diagnosing ME patients. Any data coming out of Dr Collin’s
research is likely not going to be accurate without considerable effort
being put into trying to find out how patients were diagnosed.
Dr Clare Gerada, chair of RCGPs, stated at the IiMEC8 conference in June
2013 that GPs know very little about ME.
The adult services in the UK can only offer CBT and/or GET as
set out in NICE so Dr Collin's research to document different approaches
to treatment is likely to be a simple task. Long term outcomes might be
difficult to determine as patients are usually seen by the specialist
clinics only for a certain number of times before being sent back to
These awards indicate that the understanding of this disease is still
poor in those establishment organisations which control funding.
It is a wonder to patients how
key funding agencies can get it so wrong.
It seems that in reality there is no
shortage of funds available for studies which fit government policy. And this shames those who issue statements
talking of funding being available for high-quality studies.
would indeed be a sad indictment of the society that we ourselves subsidise if
what matters is who one knows
than what one does when it comes to research funding granted for ME - and the devil take the consequences.
more GET-related research into ME,
is a fatuous approach. It is
monstrously wasteful to throw funding at poor science,
based on false views of this disease.
what of the real research required - the right stuff?
Funding is scarce and the efforts of
our supporters to make up what has been lacking from government agencies
and research funding organisations have been awe-inspiring.
Patients have worked tirelessly
and imaginatively to
raise funds for the research proposed by IiME. Currently Invest in ME
and our supporters are actually initiating, organising and funding
possibly the two most important ME research studies currently in the UK - the gut microbiome
project at UEA and the IiME/UCL rituximab clinical trial.
As mentioned in our article which was published at the beginning of
April  research
into 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.
We have 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.
is another way -
perhaps a better way forward for ME research - 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.
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?
is the meaning behind our Biomedical Research into ME Collaborative
meetings  which
have been organised by Invest in ME in cooperation with the
Alison Hunter Memorial Foundation. These aim 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. We repeat them in 2014.
Future research into ME must be based on collaboration.
But not collaboration at any cost. 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 .
There is the wrong way and the right way to progress research into ME.
For ME research there is the RIGHT stuff  - funded by patients.
As the grant to the Bristol University has shown - there is also
the wrong stuff.
Sadly, again ME research funding by the establishment is taking the wrong course.
image from The Right Stuff distributed by Warner Brothers