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Reference:
NICE JR -Dr Terry Mitchell's Witness Statement
Help ME Circle, 4 September 2009
Co-Cure: http://bit.ly/192rPX
~jvr
````
NO REAL CLINICALLY
EXCELLENT CHOICE UNDER
NICE CG53 IN THE UK NHS.
[Permission to repost].
To Whom it May Concern,
Further to my posting on 4th September 2009 of Dr
Terry Mitchell's witness statement[1] in support of
the Fraser & Short V NICE Judicial Review case in the
High Court, I am presenting further information in
connection with Dr Mitchell's support for ME patients
and the local biomedical campaign; as I believe it is
important evidence in the ongoing attempt to call
the NHS to account - both locally and nationally.
Below is a the text of a letter to local NHS/PCT
management and a pdf copy of the original letter is
available (both with personal/contact details
removed) at the web addresses below.
As you will see from the letter, co-signed by me and
dated 19 October 2006, having learned of the
retirement plans of Dr Terry Mitchell (CNCC for the
Norfolk, Suffolk, Cambs & Peterborough NHS ME/CFS
Service) the East Anglia ME Patient Partnership
(EAME) Executive wrote to local NHS/PCT Managers
(having consulted with local ME Group executives and
obtained their support) presenting a package for
both a biomedical clinic and research opportunity.
EAME worked to put a proposal together for Dr
Mitchell to be replaced as head of our local ME/CFS
service by the joint clinical lead of Dr Jonathan Kerr
and Professor Basant Puri with specialist paediatric
support from Dr Nigel Speight.
Peterborough ME activist Di Newman was particularly
helpful in obtaining considerable assistance and
input from Professor Puri.
At a public meeting in the Norfolk & Norwich
Hospital, with Professor Puri in attendance, Professor
Puri's and Dr Kerr's presentations of plans for the
proposed biomedical service/research centre were
given to and welcomed by local patients.
With Dr Terry Mitchell's full cooperation and support,
both Professor Puri and Dr Kerr attended and
participated in some of Dr Mitchell's clinical sessions
prior to his retirement.
In support of our aims, Dr Mitchell worked with local
patients/EAME and vigorously lobbied the local
NHS/PCTs on our behalf.
We were all ably supported by Professor Malcolm
Hooper - who traveled all the way to East Anglia
from Northern England to make a scientific
presentation to a meeting of Waveney NHS/PCT for
us and we also had the support of local MPs.
Additionally, our efforts were supported by a local
patient survey undertaken by the 25% ME Group for
the Severely Affected / Greg Crowhurst (Greg latterly
took on the mantle of EAME Chairman from Barbara
Robinson & Brian Hindle, who had previously taken
over the Chair from Jeff Brown).
As I have said before; we knew that we had an uphill
struggle to secure such a biomedical clinic/research
service with local NHS Officials, particularly given
what was going on at NICE concerning CG53, but we
felt it was right to try our best - not least because if
we did not do so the local NHS would have used our
lack of input as an excuse for slavishly following
NICE/CG53.
Sadly, it is not a great surprise that our attempts to
secure a biomedical ME clinic and centre of research
excellence in our region failed; we were up against
more than just the limited vision of local NHS/PCT
officials.
Currently, like everywhere else in England, there is
no consultant-led biomedical ME clinic in East Anglia.
Given that there is now so much international
peer-reviewed evidence of both serious physical
disease in ME Patients (listed by the WHO in
ICD-10-G93.3) and that we are different from
(CBT/GET-treatable) Idiopathic Fatigue Patients
(listed by the WHO in ICD-10-F.48) this is a terrible
state of affairs.
The NHS in East Anglia and throughout our
country are both failing in their statutory
duty of care and are effectively sponsoring
medical negligence and iatrogenic harm at
the hands of their 'CFS/ME' clinicians.
In the case of our local NHS officials, in my view,
their collective behaviour and failure to provide
proper science-based medical care for ME patients
can rightly be described as utterly disgraceful.
They were presented with a comprehensive and
coherent plan for a seamless transition to a service
run by highly respected specialist consultant/
researchers at absolutely no extra cost to NHS
budgets.
They have rejected these genuinely "clinically
excellent" proposals in what effectively amounts to a
three year orgy of filibustering pseudo 'consultation'
- rather favouring consultant-less slavish adherence
to the discredited NICE CG53.
Proof positive in my view that under
current NICE Guidelines there is no real
choice for patients in the NHS and that
there is no place for genuine "evidence
based medicine".
The NHS is NOT in my opinion a true patient-led
service and it only PRETENDS to listen to WHAT
patients say: it uses the fact that they say
anything as a disingenuous "consultation" fig-leaf
for an establishment-determined policy that
ignores scientific evidence; they use absence of
patient input as an excuse to carry out their own
perverse agenda.
Whatever we do, they attempt to pursue their
psycho-social agenda. As patients we have no
choice; if we want proper care and science-based
medicine then we have to continue to fight.
Science and truth will out in the end only if we keep
pushing for it. Giving up guarantees things will get
worse for us.
As part of our strategy we must now, in my
humble opinion, dig deeper into our pockets in
order to add to the growing body of
privately-funded biomedical research that will
eventually help overwhelm political malfeasance in
ME medical circles.
Kevin Short.
contact@angliameaction.org.uk
http://bit.ly/2jSRgS
http://bit.ly/4eG4oT
[1]: Dr Mitchell's witness statement is available as a
pdf download at:
http://bit.ly/r947V and http://bit.ly/ePQOL
````````
East Anglia ME Patient
Partnership (EAME)
URGENT =96 Sent by Royal Mail Recorded Delivery
19 October 2006
Mr Bernard Williamson, Chairman
Mr Michael Stonard, Chief Executive Officer
Ms Linda Clark, Head of Intermediate Care &
Rehabilitation/Chair, Norfolk & Suffolk ME/CFS
Partnership Board
Mr James Elliot, Director of Commissioning
Great Yarmouth & Waveney NHS Primary Care Trust
1 Common Lane North
Beccles
Suffolk
NR34 9BN
Dear Mr Williamson, Mr Stonard, Ms Clark, Mr Elliot,
The future of the Norfolk and Suffolk ME/CFS Clinic
East Anglia ME Patient Partnership (EAME) provides a
consultative and liaison forum for the various patient
support groups in Norfolk, Suffolk and
Cambridgeshire[1] - who in turn work to assist the
many hundreds of ME/CFS sufferers in our three
counties.
We were very sad to hear of the retirement of Drs
Terry Mitchell and Anne Gerken from the Norfolk &
Suffolk ME/CFS clinic based at the Lowestoft hospital
and provided under the aegis of the Waveney PCT.
Dr Mitchell (Department of Health designated CNCC)
and Dr Gerken will be missed by many patients and
their 20 years of clinical experience, specialist
expertise, and professional generosity will be a hard
act to follow.
Naturally therefore, we are not only concerned to
ensure that the clinic continues to receive adequate
resources to continue its work, but we also wish to
be certain that replacement staff maintain the ethos
and high level of standards set by the current clinical
lead.
In the spirit of Government exhortations for more
patient input into the NHS, we have, through
consultative mechanisms within EAME, begun our
own preliminary explorations of possible suitably
qualified replacements for Drs Mitchell and Gerken.
To this end we have had discussions with three very
eminent UK ME specialists whose reputations have
international standing: Dr Jonathan Kerr, Professor
Basant Puri and Dr Nigel Speight.
Dr Kerr is the Senior Lecturer in Inflammation and
Consultant in Microbiology at St Georges Hospital,
University of London who recently hit national news
headlines with his pioneering gene research into
ME/CFS.
He is one of the most highly regarded
clinician/researchers within the ME community.
Basant Puri is Professor and Head of the Lipid
Neuroscience Group, Consultant Psychiatrist and
Honorary Consultant in MR Imaging at Imperial
College and Hammersmith Hospital, University of
London and is also Visiting Professor to the School of
Human Sciences at the University of Surrey.
He is widely held to be a leading light in ME
research/management: having done ground breaking
work on the brain chemistry of ME/CFS sufferers
using state of the art MR imaging technology.
Dr Nigel Speight is without question the most
experienced and by far the most highly regarded
specialist ME/CFS paediatrician in the country.
A former key member of the Chief Medical Officer's
Working Group on ME/CFS, he is currently based at
the University Hospital of North Durham and working
on a follow-up study of Paediatric ME patients.
As you know, Dr Kerr and Professor Puri have now
been to visit the clinic and spent some time there
with Dr Mitchell and his staff.
Both were very impressed with the clinic and have
very much expressed a desire to jointly lead the
team when Terry and Anne leave.
One area where they felt the clinic could benefit from
some additional consultant input =96 if only for two or
three hours on one day per month =96 was that of
specialist ME/CFS paediatrics.
We are very fortunate therefore that the leading UK
ME/CFS paediatrician, Dr Nigel Speight, has
expressed an interest in working with Dr Kerr and
Professor Puri in Norfolk & Suffolk in this mutually
acceptable way.
Indeed, as well as presenting very exciting
possibilities for continuing and building upon the
clinic's good patient care and management provision,
Dr Kerr, Professor Puri and Dr Speight are keen to
explore the possibilities of involving our patients in
ongoing and highly important research work
elsewhere - as well as engage in regional
professional training and education programmes.
Crucially, it is envisaged that all this would be done
within the budget levels currently afforded to Drs
Mitchell and Gerken.
We believe that we are very fortunate indeed that
three such highly prestigious clinical/research
specialists have shown an active interest in our
regional clinic.
Clearly, this not only has potential to bring great
benefit to patients but also to increase the standing
and profile of our local NHS Trust.
We therefore wish the PCT/local NHS management to
both consider the possibility of these three eminent
doctors working with us in the near future, and to
work closely with the East Anglia ME Patient
Partnership on these issues as a matter of some
urgency.
Please let us have your initial thoughts on these
matters and tell us how we, as patients/carers can
take forward our input to your decision-making/
recruitment process.
For your information we are enclosing curriculum
vitae and some recently published research papers
from the above gentlemen. Thank you for your
attention to this matter. We look forward to hearing
from you.
Yours sincerely,
Jeff Brown, Chairman
East Anglia ME Patient Partnership (EAME).
Signed for and on behalf of EAME Executive
Committee Members:
Brian Hindle.
Dianne Newman.
Linda Pearl.
Barbara Robinson.
Kevin Short.
Pia Simpson.
Richard Simpson.
Cc: Dr Terry Mitchell; Dr Jonathan Kerr; Professor
Basant Puri; Dr Nigel
Speight.
``````
Enclosures:
Kerr JR: Curriculum Vitae.
Puri BK: Curriculum Vitae.
Speight ANP: Curriculum Vitae.
Devanur LD, Kerr JR. Review: Chronic Fatigue
Syndrome. Journal of Clinical Virology (2006),
doi:10.1016/j.jev.2006.08.013
Kerr JR, Christian P, Hodgetts A, Langford PR,
Devanur LD, Petty R, Burke B, Singular LI, Richards
SCM, Montgomery J, McDermott C, Harrison TJ,
Kellham P, Nutt DJ, Holgate ST. Current Research
Priorities in Chronic Fatigue Syndrome (CFS/ME):
Disease Mechanisms, a Diagnostic Test and Specific
Treatments. Journal of Clinical Pathology (August
2006), doi:10.1136/jcp.2006.042374
Kaushik N, Fear D, Richards S, McDermott CR,
Nuwaysir EF, Kellam P, Harrison TJ, Wilkinson RJ,
Tyrrell DA, Holgate ST, Kerr JR. Gene expression in
peripheral blood mononuclear cells (PBMC) from
Chronic Fatigue Syndrome (CFS) patients. Journal of
Clinical Pathology 2005;58:826-32.
Kerr JR, Cunniffe VS, Kelleher P, Bernstein RM, Bruce
IN. Successful intravenous immunoglobulin (IVIG)
therapy in parvovirus B19-associated chronic fatigue
syndrome (CFS). Clinical Infectious Diseases
2003;36:e100-6.
Kerr JR, Tyrrell DAJ. Cytokines in parvovirus B19
infection as an aid to understanding chronic fatigue
syndrome. Current Pain & Headache Reports
2003;7:333-41.
Kerr JR, Bracewell J, Laing I, Mattey DL, Bernstein
RM, Bruce IN, Tyrrell DAJ. Chronic fatigue syndrome
(CFS) and arthralgia following parvovirus B19
infection. Journal of Rheumatology 2002;29:595-602.
Kerr JR, Mattey DL, Thomson W, Poulton KV, Ollier
WER. Association of symptomatic acute parvovirus
B19 infection with HLA class I and class II alleles.
Journal of Infectious Diseases 2002;186:447-452.
Kerr JR, Barah F, Mattey DL, Laing ID, Hopkins SJ,
Hutchinson IV, Tyrrell DAJ. Circulating tumour
necrosis factor-a (TNF-a ) and interferon-y (IFN-y )
are detectable during acute and convalescent
parvovirus B19 infection and are associated with
prolonged and chronic fatigue. Journal of General
Virology 2001;82:3011-19.
Kerr JR. The Infectious Disease Review. Vol 1 No 4.
Editorial: The Chronic Fatigue Syndrome. Puri, B.K.
(2006) Long-chain polyunsaturated fatty acids and
the pathophysiology of myalgic encephalomyelitis
(chronic fatigue syndrome). Journal of Clinical
Pathology (in press).
Puri, B.K., Holmes, J. and Hamilton, G. (2004)
Eicosapentaenoic acid-rich essential fatty acid
supplementation in chronic fatigue syndrome
associated with symptom remission and structural
brain changes. International Journal of Clinical
Practice, 58, 297-299.
Puri, B.K. (2004) The use of eicosapentaenoic acid in
the treatment of chronic fatigue syndrome.
Prostaglandins, Leukotrienes and Essential Fatty
Acids, 70, 399-402.
[1] Beccles & District ME/CFS Support Group
Great Yarmouth & Gorleston ME Support
ME Drop-in Support Group, Yarmouth
ME Support - Norfolk
Peterborough M.E. & CFS Self-Help Group
Peterborough ME Support Group
Suffolk Youth and Parent Support Group
The Cambridge ME Support Group
West Norfolk ME Support
~~~~~~ =20
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