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The recent ground-breaking research by Professor Olav Mella
and Dr
Øystein Fluge et al. from Haukeland University in Bergen, Norway, [1] is
testament to good science performed by people who look at ME objectively and try to
understand it with scientific rigour.
This is at totally different from how most research in the UK
has been previously allowed to be funded and performed by a select group
of psychiatrists who have attempted to prove their theories and enforce their
doctrine on sick and vulnerable patients [2].
As stated in the European ME Alliance
press release of 19th October [3], the research -
| '..shows
that patients had no difficulty in adjusting to normal life -
something which makes redundant the previous attributions to
psychological problems in this patient group.' |
The Norwegian research was a double-blind, placebo-controlled trial
using a patient cohort defined according to the Fukuda, but patients save
two also satisfied the Canadian Consensus Criteria (4).
It augurs in a new era in research and interest in
researching ME.
It holds out hope for patients that part of the jigsaw puzzle
has been found which may lead to further major leaps in the understanding of
the pathogenesis of this disease.
It vindicates those who have been saying for many years that
biomedical research into ME is the way forward for providing treatment(s)
and cure(s) for this disease. From our March 2011 newsletter [5] -
Conference IIMEC6 focuses
on the need for clinical trials for ME.
Clinical trials are biomedical research studies aimed at determining the
efficacy, safety levels, and possible side-effects of new medications and
therapies. The majority of clinical trials involve testing new medications
designed to treat many types of conditions, ranging from auto-immune and
blood diseases to cancer. In the case of new medications, the trials are
jointly run by pharmaceutical companies, which are responsible of designing
the new drugs, and hospitals or health centres, which administer them to
patients.It is interesting to note that Dr Jonathan Kerr was presenting
on starting clinical trials at our first 2006 conference. His
first choice of drug at that time was interferon-b as it was
widely useable with immune modulatory as well as antiviral
properties.
A drug company had already promised the drug but of
course we now know that Dr Kerr didn't get any funding to
administer the trials. We are left wondering were we would have
been had Dr Kerr been given the funding to do all the clinical
trials he was planning on doing. |
Dr Kerr also suggested clinical trials using Etanercept
and monoclonal antibodies - one of which is Rituximab - at the IiME
conference 2007 [6].
Of course we know that Dr Kerr received no funding to do these trials or any
further funding to continue with other research that he performed from the MRC.
In 2010 at the IiME conference panel discussion Dr Kerr asked the other
panel members if any of them thought ME was a prodormal autoimmune disease?
[7]
It is a pity Dr Kerr's research was cut short.
A researcher ahead of his
time? Or one who was merely abused by the corrupt system of funding and
refereeing research which has been
engineered and orchestrated by vested interests?
That is a judgement that will be left for
posterity - but it is a judgement that eventually will be made.
It comes as no surprise to IiME that the
ground-breaking research into ME comes from Norway - having borne witness to
the energetic and continuous efforts of Norwegian patients [8] and our
Norwegian colleagues in the European ME Alliance [9].
Norwegian
neurologist Professor Harald Nyland, who presented at the
IiME conference 2009 [10], was also one of the
authors of the Fluge and Mella study and it is gratifying to see this
cooperation between researchers. The Norwegian researchers Fluge and Mella
presented their research at the 6th Invest in ME International ME/CFS
Conference in London in May 2011 [11]. It is a point of credit, that at the
request of the researchers and of IiME, that attendees at the conference by
and large maintained the embargo on reporting so that nothing would
jeopardise the eventual publication of the paper.
The presentation is available on the IiME
conference DVD [12].
We wonder what could be done if the IiME proposal could obtain support from
funding bodies to initiate a strategy of world-class research beginning in
Norwich.[13]
References:
Addendum:
Meanwhile the silence about
the Norwegian research from the BBC and UK media and government officials is
deafening. Whilst news of negative papers regarding a link between human
gamma retroviruses and ME are immediate news in the BBC, BMJ and other
establishment newspapers there remains a no news of this ground-breaking
research from Norway.
It must be asked who is
pulling the BBC's strings?
Norwegian Health Directorate
Apology
The Norwegian Directorate of
Health has apologised to ME patients for the way in which they have been
treated and the lack of adequate services -
click
here.
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