Research - Look to the End
Since Science magazine published the XMRV research
by the WPI, National Cancer Institute and the
Cleveland Clinic there have been several attempts to
cast doubt on the quality of that research. It seems
a strange way to conduct science where the quality
of the research and the methods employed to perform
the research are seemingly thought of as having been
carried out by a couple of amateur scientists and
published by a school magazine.
It needs to be re-stated that the original XMRV
research was carried out by organisations which are
professional and expert in their processes. It also
needs to be re-stated that the work was a
culmination of years of work and underwent a
rigourous six month peer review process by Science
magazine before it was published.
Compare this with the recent research
using different methodologies and patient cohorts
which now have been carried out by Erlwein et al.,
Imperial College, published online in Plos One
and, more recently, by a
new study (published 15 February 2010)
online journal Retrovirology by Harriet C T Groom
et al. "Absence of xenotropic murine leukaemia
virus-related virus in UK patients with chronic
fatigue syndrome" Retrovirology 2010,
Erlwein et al. found no XMRV by
nested PCR (0/186) in their samples and the
research by Groom et al. has not identified XMRV DNA
in any samples either by PCR (0/299).
These two studies were not
replication studies of the original one published in
Science magazine and patients were told to expect
negative results by Drs. Klimas and Bell as the
first studies are being published.
These first studies used different
methods when trying to validate their test to detect
XMRV in blood samples from CFS patients.
We are reminded of Dr Chia's words
in his entry in Lost Voices which was published
before the discovery of XMRV in CFS. Dr Chia writes
that many of the assumptions that were
made about this illness during the past
two decades were erroneous. The
discrepant results from different
laboratories were probably due to
differences in the handling of blood
samples, and the sensitivity of the
tests used to document the presence of
virus in the tissue of ME/CFS patients"
and in relation to similar problems
of early HIV research -
problem was solved after this wise
researcher sent his workers to another
laboratory to learn how to do the test."
This is what should be done with the
XMRV research in order to stop wasting precious time
and money. Collaboration and cooperation is the key.
We should learn from past mistakes.
We are sure all this will be well
discussed at the IiME May conference. The existence
of the XMRV is not questioned and there is a lot of
interest in studying this new retrovirus.
The WPI comments on these two
studies can be seen here
Expert opinion discussing this
latest study by a virology professor can be found
Fundraising for Invest in ME
We would like to thank Barbara Milson
for her event last year which raised money for IiME at
the Caterham Dene Fete. We have a picture, along with
other recent events, on our fund-raising page -
recently added articles from Margaret Williams to
the web site.
Some of these articles were part of
a larger document which was being created, and which
have now been published under the title -
Medicine: How to Make a Disease Disappear.
This 442 page
report has been produced to show the failings of the
Medical Research Council and specifically the PACE
The report addresses the background
to the MRC "PACE" Trial on "CFS/ME", the biomedical
evidence that disproves the assumptions of the MRC
trial Principal Investigators, the many extremely
disturbing issues surrounding the PACE Trial, and
illustrations from the Manuals used in the trial.
The document contains
the background to consideration of and quotations
from the Manuals for the Medical Research Council's
PACE Trial of behavioural interventions for Chronic
Fatigue Syndrome/Myalgic Encephalomyelitis together
with evidence that such interventions are unlikely
to be effective and may even be contra-indicated.
The failings of the Medical Research
Council, past and present, have culminated in an
official complaint being made by Professor Malcolm
The links to the
Magical Medicine document, and to the
formal complaint to the Minister of State
responsible for the Medical Research Council, which
Professor Malcolm Hooper has
submitted, may be found here -
Magical Medicine in Action
In the light of this latest epic piece
of Hooper/Williams research it is interesting to
reflect on the comments of Professor Stephen Holgate
of the Medical Research Council (and head of the
current MRC panel looking at ME research) in a Times
online article on 25 January 2010
"...As a clinician who sees patients with this
group of diseases I recognise there's a real
thing here, it's not all psychiatric or
psychological. Unquestionably in some of these
patients there are abnormalities and biochemical
changes in the brain, the central nervous
system, the spinal cord or the muscles. My
personal view is that we're not dealing with a
to a lay observer this might then mean there is
something wrong in the current process of diagnosis.
For the representative of the MRC (an organisation
that has consistently maintained that
there is a lack of high quality research
applications into ME) such an admission that the MRC
are not dealing with a "single condition" should
obviously make it mandatory that his panel establish
a correct set of diagnostic criteria for ME as the
basis of future research.
nothing has been decided in this area during the two
years it has taken to get one meeting arranged by
that panel - and time slips by.
should surely also ring alarm bells that the MRC is
maintaining a false strategy by continuing to
mix the psychosocial and the biomedical factions
together which will fudge research and continue to
have serious doubts about the likelihood of the MRC
or their panel ever progressing to the point whereby
they fund biomedical research - and the Magical
Medicine clearly shows this.
let's test the workings of the MRC panel now.
in ME have written to Professor Holgate and invited
him to recommend funding of Dr
Kerr's recent XMRV proposal (click
here). Dr Kerr is a world-class researcher on ME
and, although he does hold a place on the latest MRC
panel, we wonder if that panel will be allowed to
decide whether this is of high enough quality.
We have also invited him to standardise on usage of
the Canadian Consensus criteria for selecting
patients for all future research into ME.
As we have stated previously the issue of research
into ME would be relatively simple to resolve if
there were no vested invests involved. The MRC are
chiefly responsible for this, allowing an
environment to exist where suspect research is
funded without proper controls and high-quality
research is stunted.
Such a situation is described
by Pallab Ghosh,
science correspondent, BBC News, 2
February, 2010 [http://news.bbc.co.uk/1/hi/sci/tech/8490291.stm]
in which he writes about biased peer reviewing
regarding stem cell research which sounds so similar
to the plight of ME researchers. The landmark
research by the WPI, National Cancer Institute and
the Cleveland Clinic which led to their XMRV and CFS
research paper being published in Science magazine,
succeeded after six months of rigorous peer
reviewing. Yet a paper by Erlwin et al., published
in an online Journal PloS ONE, had but a few days of
peer reviewing before being widely quoted in the
British press in attempts to refute the WPI
As an example Pallab Ghosh writes -
experts say they believe a small group
of scientists is effectively vetoing
high quality science from publication in
cases they say it might be done to
deliberately stifle research that is in
competition with their own."
This seems to have been the case
with the MRC and biomedical ME researchers for the
past 20 years. Magical Medicine!
Head of CFS Research at CDC
the Atlantic that other inhibitor of progress into
ME/CFS - the Centres for Disease Control - has
removed Dr William Reeves from the post of Head of
CFS Research. This is welcome news for the ME
community and the hope is there that change is on
last newsletter (click
here) we mentioned that now is the time for
change with an opportunity for far-reaching reform
of the way research into ME is funded and how
government organisations perceive ME.
Yet for some any change will come
The tragic story of Lynn
Gilderdale's death and the trial of her mother has
made ME a story which has now appeared on the front
pages of newspapers and as the main story of
television news programs. Invest in ME have
refrained from commenting on this case. There are
few more words necessary to describe the tragedy and
this case is personal and evokes differing views.
This case has itself been added to
the debate on assisted suicide rather than posing
the single, simple question which should have been
at the front of the coverage by everyone discussing
or reporting the case - why did it ever come to the
situation where a mother has to participate in the
death of her daughter?
The failings of the government, the
Chief Medical Officer and certainly the Medical
Research Council ought, perhaps, to have been on
trial - or at least examined by the media. Hopefully
Professor Hooper's official complaint to the
Minister responsible for the MRC may bring forth
some examination of a generation of time-wasting,
pseudo-science and obfuscation by the establishment.
If patients such
as Lynn had had a diagnosis of diabetes or heart
disease there would have been access to all kinds of
support and specialist services based on biomedical
understanding of the illness and by staff
appropriately qualified to help. Due to lack of
acceptance of ME as a neurological illness, and the
consequent cascade effect of no funding for proper
research, then no services have been developed for
severely affected pwme. Still it doesn't stop some
commentators speculating whether ME exists at all as
they continue the myth of the 'chronic fatiguing'
Invest in ME responded to an
editorial article in the British Medical Journal
about the case. Our response on the BMJ Rapid
Responses web site was not published - so we have
published it here -
The case of Lynn
Gilderdale is reason enough to demonstrate why one
cannot marry the psychosocial view of ME with the
biological view of the illness and why Professor
Holgate's strategy of doing so is seriously flawed.
The current media
interest has been around Lynn but unfortunately
there are many others like Lynn lying in their
homes being cared for 24 hours a day, not having any
medical attention for years. And other cases where
children are being forced to exercise and change
behaviour to "overcome" their ME. The policies of
the MRC for the last generation and the continuing
tardiness with which they treat the urgent need for
biomedical research is appalling.
E-petition Response from the Prime Minister's Office
A recent petition initiated by Dave
Loomes requested that a public inquiry be set up to
investigate the vested interests which have so
manipulated the establishment policies around ME -
The reply is staggering in its crass
refusal to even analyse fully the question posed.
The government classifies the
illness as neurological (G93.3) and yet their reply
states that the classification of ME is confusing
and controversial since there are five different
World Health Organisation categories that could be
chosen by a doctor to describe the illness.
One can easily identify where the
information for this reply comes from. This reply
only goes to reinforce the reasons why the MRC will
never fund biomedical research into ME.
The last paragraph of the reply
reflects on Professor Peter White's presentation at
the Royal Society of Medicine CFS/ME conference held
in 2008 where he spoke about the classification
needing "sorting out".
Patients have no problem with ME
ICD10 G93.3 classification. It is quite clear what
it means and the reply from the government shows
exactly the reasons why Lynn Gilderdale and others
like her are left to suffer without any hope of
Lost Voices - New Edition
The order for a new edition of Lost
Voices has been made.
The second edition has been updated
to include details of the latest research and an
additional Voice - Christine Hunter, of the Alison
Hunter Memorial Foundation, has allowed Alison
Hunter's story to be included. Lost Voices has
articles from Annette Whittemore, Dr John Chia and
others as well as the stories from people with ME
and their families.
Invest in ME will use the book to
further awareness of this illness in the run-up to
ME Awareness Month in May and to counter
the prejudiced denial of ME - as an 'aberrant
belief' rather than a devastating physical
We also still have the Sponsor a
Book scheme whereby we will send a book to the
healthcare (or other) person whom you choose with a
More details here.
News from the European ME Alliance
A new member was added to the European ME
Alliance. Switzerland has become the latest
country to be represented by the Alliance with
Verein CFS Scweiz joining. More details are here
click here. This brings to nine the number
of countries currently represented.
The EMEA groups are so far organising two
conferences this year.
Apart from the IiME conference in
London our German colleagues are organising a
biomedical research conference in Dortmund,
Germany, on 24th September.
The Alliance hopes to have more
news of other events planned over
the next few months.