The Editor of the
Lancet recently participated in an Australian radio
broadcast which included proponents of the PACE
Trials. The comments by Dr. Horton indicate a lack
of knowledge about this disease and about
the biomedical research which has taken place and is
continuing, even though it receives none of the
funding which psychiatrists have received to promote
their flawed research.
Invest in ME
responded.
We publish this
letter to allow as much open debate as possible and
to show that there is a possibility to change things
for the better for people with ME and their families
- if the will and the education is available.
Ignorance is not
an option.
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Letter to Editor of the Lancet
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To: Dr Richard Horton Editor The Lancet
Dear Dr Horton,
Recently you have commented about the PACE trials.
You have described patient advocates as a
very damaging group of individuals, who have distorted
the debate.
Invest in ME is a
UK
charity which seeks to educate about Myalgic
Encephalomyelitis (ME/CFS).
We are advocates of better education regarding ME/CFS.
We are organising and hosting our 6th Invest
in ME International ME/CFS Conference at One Birdcage
Walk, Westminster,
London, on 20th May
2011.
The conference has been given full CPD accreditation.
We would not wish the editor or staff of the Lancet to
be criticised for holding unhelpful illness beliefs with
regard to ME/CFS.
So, in the spirit of open debate, the chairman and
trustees of Invest in ME respectfully invite you to
attend the conference on 20th May as guest of Invest in
ME.
The conference presents the biomedical research which is
being performed by world-class scientists from USA and
Europe - research which the Lancet is seemingly unaware
of, in that it never seems to mention any of it.
At this year’s conference you will have the opportunity
of hearing from world-renowned experts on ME/CFS
including one of the most experienced paediatricians in
the world discussing a 25-year follow-up of ME/CFS
patients; a former Stanford doctor discussing translational
research into ME/CFS; the clinical and research
experiences of an infectious diseases specialist
concerning enteroviral research in ME/CFS; the proteomics
of cerebrospinal fluid in ME/CFS; the
possibilities in the UK for genome sequencing,
immunological and virological analysis of ME/CFS; B-cell
depletion therapy and clinical trials of Rituximab in
ME/CFS; the clinical experiences of diagnosis,
treatments and trials in ME/CFS from Europe’s most
experienced ME/CFS researcher; and the latest news of
XMRV research and ME/CFS, including results from
Germany.
It ought to be important for the Lancet to be acquainted
with current biomedical research into this disease
especially as the Lancet has not distinguished itself in
being objective in its reporting of ME/CFS.
Apart from the conference on 20th May we will
also be organising and hosting a pre-conference evening
presentation in Westminster on 19th May. The
presentation is entitled
Science, Politics .... and ME
and will have respected scientist, academic and
politician Dr Ian Gibson and the respected US journalist
Hillary Johnson presenting transatlantic views of the
influence of politics on research, media and healthcare.
You are cordially invited to that evening as guest of
Invest in ME.
In addition to the above Invest in ME would also
like to facilitate a meeting for you with some of the
researchers who will be presenting at the conference. We
can organise this on the 19th May in London
at a venue arranged by the charity. Here you would be
able to discuss with scientists who have and are
performing biomedical research into ME/CFS and research
upon which the Lancet really ought to be reporting.
We understand that, having published the PACE trials
document – a study which most ME/CFS patient
organisations view as deeply flawed and a complete waste
of money, it is difficult for the Lancet to admit that
this document is of no value in treating ME/CFS.
However, there is no excuse for ignorance with regard to
any disease – especially ME/CFS which has been so
maligned by misinformation, lack of funding and vested
interests employed by the insurance industry.
The Lancet has a duty to report honestly and fairly.
We note from your web site that the founder of the
Lancet, Thomas Wakley, founded
The Lancet with the statement that "A lancet can
be an arched window to let in the light or it can be a
sharp surgical instrument to cut out the dross and I
intend to use it in both senses".
Patients suffering from this awful disease certainly
need a campaign to cut out the dross which we see only
too clearly in the way ME/CFS is presented by false
research such as the PACE trials - and healthcare staff
really do need to see the light.
We welcome you to our conference events in London in May
to listen to the biomedical research and demonstrate
whether the Lancet still maintains that it is a
reformist medical newspaper known for its campaigns.
We look forward to welcoming you at the conference in
May,
Yours sincerely,
The Chairman and Trustees
Invest in ME
UK Charity Nr 1114035
