|
From Malcolm Hooper
Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus
Professor of
Medicinal Chemistry
University of
Sunderland,
SUNDERLAND SR2 3SD
Chief Scientific
Adviser to the Gulf
Veterans'
Association
President: the
National Gulf War
Veterans and
Families
Association, NGVFA,
(2002)
Dr
Frances Rawle
Head
of Corporate
Governance and
Policy
Medical Research
Council
14th
Floor
One
Kemble Street
London WC2B 4AN
26th
January 2011
Dear
Dr Rawle
Re:
Complaint about MRC
PACE Trial
This
is to acknowledge
your much-delayed
letter dated 6th
January 2011 which I
did not receive
until 20th
January 2011.
I
found your response
to be disappointing
and unconvincing;
not only was it
dismissive, it
proceeded by
assertion and denial
whilst not providing
any reasoned
consideration or
evidence to counter
the substantial and
secure evidence-base
set out in my
complaint.
Despite your
conclusion that none
of my complaints can
be upheld because
you believe they are
groundless and
without substance --
and you state you
will not be taking
further action --
the matter is not
concluded, as you
have failed to
address the issues
set out in the
complaint. The
MRC’s total
rejection of my
complaint should not
be based on what you
believe, but on the
facts with which you
were provided.
Nowhere did I draw
attention to
scientific facts
that can be disputed
by evidence rather
than by belief.
You
start by saying: “Your
letter to Dr Roberts
implies that you
wish us to focus our
response on concerns
relating to the PACE
Trial”. My
complaint, both the
report (Magical
Medicine: how to
make a disease
disappear) and the
accompanying letter,
clearly set out that
the entire complaint
was about the PACE
Trial. Your
inference reveals an
extraordinary
misunderstanding of
the substance of my
complaint.
Your
response would have
been more believable
if you had taken
seriously even one
point of the
complaint; the fact
that you have
dismissed all the
concerns indicates
that you have not
really attempted to
take any of them
seriously.
Nowhere in your
letter is there an
acknowledgement of
the WHO ICD
classification since
1969 of ME/CFS as a
neurological
disorder, a disorder
that was recognised
as organic by the
Royal Society of
Medicine in 1978 and
by the Department of
Health in 1987, and
a disorder which in
2002 the Chief
Medical Officer said
should be set
alongside multiple
sclerosis, MS, and
motor neurone
disease, MND.
Nowhere is there any
acknowledgment of
the biomedical
nature of ME/CFS as
a chronic
inflammatory
multi-system
disorder.
It is
clear that you are
not talking about
ME/CFS (the alleged
subject of the PACE
Trial) at all, yet
the results of the
PACE Trial will be
applied to those
with ME/CFS. Which
other classified
neurological
disorder has
behavioural
modification as the
primary -- indeed
the only --
intervention?
You
state that from your
reading of my
report, you have
reduced my main
concerns to three:
(1) MRC funding of
the PACE Trial; (2)
potential harmful
effects of the
interventions and
(3) allegations of
misrepresentation
and coercion, none
of which you have
addressed
satisfactorily and
you have ignored
many other important
and justified
concerns entirely.
May I
remind you briefly
of the listed
concerns, which were
clearly enumerated
in “Conclusion” on
pages 398 – 403 of
my report:
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1. |
The
Principal
Investigators
have
used
entry
criteria
that do
not
define
the
population
they
purport
to be
studying;
they are
not
studying
ME/CFS,
but
ubiquitous
chronic
fatigue.
The two
are not
the
same, as
confirmed
by the
American
Medical
Association
in July
1990.
The PACE
Trial
Investigators
have
long
desired
to
investigate
the role
of
psychiatric
illness
in
“chronic
fatigue”
(ie. in
chronic
fatigue
without
organic
aetiology).
ME/CFS
is not a
psychiatric
illness
but a
classified
neurological
disorder,
just as
multiple
sclerosis
is a
classified
neurological
disorder.
Further
the PIs’
failure
to
recognise
the
importance
of
subgroups
only
compounds
this
basic
flaw.
You
do not
attempt
to
address
this
cardinal
concern.
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|
2. |
It
is a
basic
rule of
any
clinical
trial
that
participants
are not
told
during
the
trial
how
effective
is the
intervention
that
they are
receiving.
It
should
never be
suggested
to trial
participants
that the
intervention
they are
undertaking
is a
cure
unless
it is
certain
that it
is
indeed
curative,
in which
case
there
would be
no need
for a
clinical
trial to
prove
the
efficacy
of the
intervention.
You
dismiss
this
concern
by
stating:
“I
should
make it
clear
that MRC
considers
it good
practice
for
researchers
to
engage
with
trial
participants”.
Your
comment
fails to
address
my
concern
that
such
engagement
should
not be
specifically
directed
at
achieving
the
desired
outcome
of the
trial by
publishing
and
promoting
glowing
reports
from
trial
participants
during
the
trial
and by
invoking
trial
participants
to
praise
the
trial to
their
friends
and
contacts
and to
influence
and
encourage
those
contacts
also to
enter
the
trial.
To do so
is
unethical,
but that
is what
happened
in the
PACE
Trial.
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|
3. |
The PIs
propose
to carry
out a
secondary
analysis
of the
data by
using
criteria
that do
not
officially
exist
(the
“London”
criteria)
as well
as the
CDC 1994
criteria
(which
may
include
psychiatric
patients
and do
not
specifically
identify
patients
with
discrete
ME). If
the PACE
Trial
Oxford
entry
criteria
had been
rigorously
applied,
no
amount
of
secondary
analysis
would
identify
those
with
ME.
You do
not
address
this
concern. |
|
4. |
The
Investigators
diluted
the
entry
criteria
after
the PACE
Trial
had
commenced
by
moving
the
SF-36
(physical
function
score)
goalposts
and by
including
people
who had
previously
undergone
CBT/GET
and had
initially
been
rejected
as PACE
Trial
participants.
It
cannot
be
denied
that the
PACE
Trial
Investigators
changed
the
design
of the
Trial as
they
went
along,
which
must
surely
undermine
the
reliability
of all
conclusions
to be
drawn
from the
data,
not
least
because
the
first
tranche
of
participants
met
different
entry
criteria
from
those
who were
recruited
later.
This can
only
mean
that,
because
the
entry
criteria
had been
diluted,
people
in the
second
and
subsequent
tranches
were
less ill
and are
thus
more
likely
to
respond
favourably
to the
interventions.
You
do not
address
this
concern.
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|
5. |
The
Investigators
failed
to take
account
of the
extant
literature
about
the
disorder
in
question,
which is
a very
serious
issue in
a
clinical
trial.
You
do not
address
this
concern. |
|
6. |
The
Investigators
mis-portrayed
ME/CFS
as a
dysfunctional
belief
instead
of a
chronic
inflammatory
neuroimmune
disorder.
You
do not
address
this
concern. |
|
7. |
Even
though
they
acknowledge
they do
not know
what
causes
“CFS/ME”,
in the
CBT and
GET arms
of the
trial
the PIs
assumed
that
participants
have no
physical
disease.
The PIs,
however,
did not
inform
participants
of this
and
portrayed
their
own
assumptions
as
established
facts,
thereby
deliberately
misleading
participants.
You
do not
address
this
concern.
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|
8 |
The
Investigators
did not
include
essential
objective
pre-trial
or
post-trial
cardiovascular
or
immunological
screening.
You
do not
address
this
concern.
|
|
9 |
The
Investigators
chose a
six
minute
walking
test as
“an
objective
outcome
measure
of
physical
capacity”.
The
reference
provided
by the
PIs for
this
is
Buckland
RJA et
al (BMJ
1982:284:1607-1608)
but the
paper
itself
cites
McGavin
CR et al
(BMJ
1976:i:822-823),
which
draws
attention
to the
difficulty
of
achieving
reproducible
results
with
such a
test.
Moreover,
the
Chief
Principal
Investigator
himself,
Peter
White,
has
published
evidence
supporting
the need
for
serial
post-exercise
testing
(Immunological
changes
after
both
exercise
and
activity
in
chronic
fatigue
syndrome:
a pilot
study.
White
PD, KE
Nye, AJ
Pinching
et al.
JCFS
2004:12
(2):51-66
).
You do
not
address
this
major
concern.
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|
10 |
The
Investigators
originally
intended
to
obtain a
non-invasive
objective
measure
of
outcome
using
post-treatment
actigraphy
but
abandoned
this on
the
spurious
grounds
that
wearing
such a
monitor
for one
week
would be
too
great a
burden
at the
end of
the
trial (http://www.biomedcentral.com/1471-2377/7/6/comments).
Therefore,
after
spending
millions
of
pounds
of
public
money
and
involving
hundreds
of
people
in an
intensive
regime,
the PIs
completely
fail
to
obtain
objective
measurements
that
would
reveal
whether
or not
the
interventions
are
successful
in the
chosen
cohort
(who may
not
necessarily
have
ME/CFS,
since
the
Oxford
entry
criteria
exclude
those
with
neurological
disorders).
You
do not
address
this
concern. |
|
11 |
The PACE
Trial
results
are to
be based
only on
participants’
subjective
responses
to
questionnaires.
This is
of
particular
concern
when two
of the
interventions
being
tested
(CBT and
GET)
specifically
encourage
participants
to
re-interpret
their
symptoms
as not
resulting
from
disease
but as
normal
responses
to
exercise
in
deconditioned
people.
You
do not
address
this
concern. |
|
12 |
The PACE
Trial
Investigators
did not
disclose
important
information,
for
example,
their
own
conviction
that the
participants
do not
have a
physical
disease,
and
their
own
assumption
that two
of the
interventions,
CBT and
GET, do
not work
from a
pathological
perspective,
only
from a
psychiatric
perspective.
This
could
mean
that
participants
were not
in a
position
to
provide
fully
informed
consent.
The
Investigators
already
know (as
does
Professor
Simon
Wessely,
who
oversees
the PACE
Trial
Clinical
Unit)
that: “These
interventions
are not
the
answer
to CFS”
(Editorial:
Simon
Wessely;
JAMA 19th
September
2001:286:11)
and that
“many
CFS
patients,
in
specialised
treatment
centres
and the
wider
world,
do not
benefit
from
these
interventions”
(Huibers
and
Wessely;
Psychological
Medicine
2006:36:(7):895-900).
You
do not
address
this
concern.
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|
13 |
The PACE
Trial
manuals
describe
behaviours
and
techniques
that
should
not --
and I
believe
cannot
-- be
considered
ethical
by any
independent
and
reasonable
observer.
Much of
the
written
information
and
instruction
to
therapists
and
doctors
appears
highly
exploitative,
as well
as
revealing
an
ignorance
of
ME/CFS.
You
do not
address
this
important
concern. |
|
14 |
The
Investigators
may not
have
achieved
the
required
clinical
equipoise
of the
trial
because
they
have
already
formed
their
opinion
that
“CFS/ME”
is a
somatoform
disorder.
You
do not
address
this
concern. |
|
15 |
The
Investigators
and some
members
of the
Trial
Steering
Committee
initially
failed
to
declare
significant
financial
conflicts
of
interest.
You
comment
about
this
issue
that I
made
clear in
my
report
that the
PIs
declared
their
conflicts
of
interest
in the
PACE
Trial
protocol,
whereas
I had
pointed
out that
at the
Trial
Steering
Committee
meeting
on 22nd
April
2004,
all
members
present
were
asked to
declare
any
conflict
of
interest.
No
financial
conflicts
of
interest
were
declared
and it
was
agreed
that
no-one
present
had any
other
substantial
or
material
conflict
relevant
to their
work on
the PACE
Trial.
Amongst
those
present
were
Professors
Peter
White,
Michael
Sharpe
and
Trudie
Chalder,
who all
work for
the
health
insurance
industry
and who
thus
have
considerable
conflicting
financial
interests. |
No meaningful
analysis of a trial
with such a
heterogeneous cohort
is possible.
Importantly, the
results of the PACE
Trial can do little
for people with
ME/CFS because the
trial is based on a
myth that is allowed
to masquerade as
science.
Furthermore, how can
the results of an
intervention in any
trial be
“evidence-based” for
efficacy in a
disorder when those
most severely
affected by that
disorder are
excluded from the
outset?
You will no doubt be
aware that the
American Psychiatric
Association is
intent on including
in DSM-5 a catch-all
category for
somatoform disorders
that will include
virtually every
established medical
disorder that causes
somatic symptoms
“of unclear
pathology”, thus
bringing in millions
of organically sick
patients under the
mental health
banner. The APA is
indulging in what
has been described
as “a seriously
unjustified power
grab” and
psychiatry “is
becoming much too
closely aligned with
and mutually reliant
on both state and
corporate interests
as opposed to the
interests of the
patient”
(Co-Cure ACT: 22nd
January 2011). This
situation is
certainly deemed by
me and by many
others to be
exemplified in the
PACE Trial.
To quote Sir Paul
Nurse (Nobel
Laureate): “We
need to leave the
politics and
ideology behind and
concentrate on the
science”, a view
with which the MRC
apparently sees no
need to concur,
since rational
argument and
extensive evidence
have been put in
place but which the
MRC seems unable or
unwilling to
comprehend.
Objective evidence
is the essence of
science so, mindful
of your own
presentation on 4th
December 2009
(“Tackling Fraud in
Biomedical Research
– An MRC
Perspective”) at the
Workshop on
Mechanisms of Fraud
in Biomedical
Research II at The
Wellcome Trust
Centre for the
History of Medicine,
I find it remarkable
that you remain
unperturbed about
what I and others
deem to be abuse of
the scientific
process throughout
the PACE Trial when
direct evidence of
that abuse has been
brought to your
attention and when
you have had eleven
months in which to
consider it.
Your failure to
address key concerns
does indeed bear out
the evidence that I
put before the
Minister, namely,
the evidence that
the MRC has no
intention of heeding
the many justifiable
complaints that were
sent in about the
PACE Trial,
including those
submitted by the ME
Association and
other ME/CFS
charities,
clinicians and
medical scientists,
all of which were
apparently
systemically
disregarded and
often not even
acknowledged;
indeed, Elizabeth
Mitchell, the MRC’s
External
Communications
Manager, actually
informed one medical
scientist (himself a
former MRC
grant-holder) who
lodged a formal
complaint about the
PACE Trial via his
MP that the MRC had
no interest in
complaints about the
PACE Trial. It
appears that,
despite considerable
evidence-based
efforts to persuade
it otherwise, the
MRC Neurosciences
and Mental Health
Board remains
resolute in its
determination to
categorise ME/CFS as
a somatoform
disorder and
consequently has no
interest in finding
– or even seeking
--a cure.
You attempt to
justify the MRC’s
funding of the PACE
Trial by stating:
“there was a lack of
high quality
evidence to inform
treatment of CFS/ME
and in particular on
the need to evaluate
treatments that were
already in use and
for which there was
insufficiently
strong evidence from
random controlled
trials of their
effectiveness”.
That is a remarkable
admission, since the
NICE Clinical
Guideline 53 of
August 2007 relies
upon the pre-PACE
Trial
“evidence-base” to
recommend the use of
CBT and GET
nationally as the
intervention of
choice for ME/CFS,
yet you state in
your letter that
there was
insufficient
evidence for the
implementation of
this nationwide
programme of CBT and
GET recommended by
NICE in its Clinical
Guideline 53.
In other words, on
the one hand
Professor Peter
White was strongly
promoting CBT/GET in
his submissions to
NICE because he
asserted that there
was sufficient
evidence of their
efficacy for their
implementation
across the nation,
yet on the other
hand he has received
millions of pounds
of tax payers’ money
to carry out the
PACE Trial because
there was NOT
sufficient evidence
of the efficacy of
the same
interventions.
This can only mean
that since August
2007 NICE has been
promoting
interventions and
subjecting sick
people throughout
the nation to a
regime for which
insufficient
evidence exists, a
situation that
raises yet more
legal issues and
ramifications, since
the correct option
for NICE pending the
outcome of the PACE
Trial was to have
recommended the use
of CBT and GET
“only in research”,
not to have issued
recommendations for
widespread clinical
use when evidence of
efficacy for those
interventions was
insufficient at the
time the Guideline
was published. This
raises the issue of
exactly why
the Guideline
Development Group
was so determined to
implement nationwide
CBT and GET on an
insufficient
evidence-base.
The evidence that
behavioural
modification
techniques have no
role in the
treatment of ME/CFS
is already
significant and has
recently been
confirmed yet again
by a study in Spain,
which found that in
(ME)CFS patients,
the two
interventions used
in the MRC PACE
Trial, CBT and GET,
did not improve HRQL
(health-related
quality of life)
scores at 12 months
post-intervention
and in fact resulted
in worse physical
function and bodily
pain scores in the
intervention group
(Nunez M et al;
Health-related
quality of life in
patients with
chronic fatigue
syndrome: group
cognitive
behavioural therapy
and graded exercise
versus usual
treatment. A
randomised
controlled trial
with 1 year
follow-up. Clin
Rheumatol 2011, Jan
15: Epub ahead of
print).
To those of us who
actually know and
who possess written
evidence of what has
been happening in
the PACE Trial, it
seems irrefutable
that the commercial
interests of the
health insurance
industry (and the
PIs who work for it)
and of the State far
exceed the interests
of the patients, a
situation which the
MRC apparently
supports and which
calls to mind the
words of a famous
American lawyer and
author: “They had
invested far too
much to question
their own theories
and actions”
(The Confession;
John Grisham).
However, it will not
be long before the
PIs and those who
support them will be
compelled to
acknowledge the
iatrogenic harm
caused by their
pseudo-science and
their denial of the
biomedical science
that underpins
ME/CFS. Not only is
there increasingly
strong evidence
forthcoming from the
US of a retrovirus
being associated
with ME/CFS, but
privately-funded UK
research by ME
Research UK (MERUK)
carried out in
Dundee has uncovered
important
cardiovascular
abnormalities in
ME/CFS, including
increased oxidative
stress leading to
damaged blood
vessels, abnormal
acetylcholine
metabolism (an
important
neurotransmitter and
dilator of blood
vessels), increased
apoptosis which
indicates active
inflammation, and
evidence of arterial
stiffness in both
adults and children
with ME/CFS. Taken
together, these
findings provide
evidence of a
compromised
cardiovascular
system and of
significant
inflammation in the
disease process in
ME/CFS patients.
Yet more research
funded by MERUK has
enabled Professor
Julia Newton from
Newcastle to provide
evidence of
autonomic nervous
system dysfunction
in three-quarters of
patients tested (and
when the ANS goes
wrong it results in
severe consequences,
since it controls
cardiovascular,
respiratory and
digestive function
and regulates events
in exercising
muscle).
Additionally, she
has shown by MRS a
significant
impairment of proton
excretion following
exercise in ME/CFS
patients, meaning
that patients have
delayed recovery
from exercise, with
dysregulation of
acid transporter
pathways and
vascular flow in
muscle (giving rise
to the classic post-exertional
fatigability in
ME/CFS).
It defies
credibility to
believe that
indoctrinating such
patients into
accepting that they
do not have a
serious organic
illness (but are
simply deconditioned
and victims of their
own aberrant
thoughts and
beliefs) can help
them in any way
whatsoever and,
since patients
quickly work out for
themselves that in
order to survive
they have no
alternative but to
pace themselves, it
does not need a £5
million study to
prove that pacing is
helpful. The Chief
Principal
Investigator,
Professor Peter
White, holds views
on pacing that are
well-known: “The
theoretical risk of
pacing is that the
patient remains
trapped by their
symptoms in the
envelope of
ill-health”
(Postgraduate
Medical Journal
2002:78:445-446).
Professor White’s
published views are
incongruous with the
stated aim of the
PACE Trial.
In reality,
“adaptive pacing
therapy” (APT) as
used in the PACE
Trial is little
different from GET
since it involves
achieving and
sustaining
“targets”; it seems
that the Trial
Investigators were
seeking to placate
participants by
referring to APT as
“pacing” (which
participants know to
be helpful) when in
reality APT is a
vehicle for
incremental aerobic
(or, according to
the Investigators,
“paced”) exercise.
In relation to my
concern that the
objective of the
PACE Trial was to
reduce the number of
patients with ME/CFS
on State benefits
and to reduce
payments by
insurance companies,
you state: “Any
externally-driven
motivation in the
decision to fund
this trial was a
wish to respond to
the concerns of
patients, carers and
doctors that more
research into CFS/ME
was required”.
You do not
address this concern
adequately. Where is
the evidence of
patients and carers
calling for more
research into
behavioural
interventions in
ME/CFS? On the
contrary, the ME
Association called
for the PACE Trial
to be stopped.
Furthermore, why
were participants to
be questioned about
their financial
situation and asked
about what State
benefits they were
receiving, including
being questioned to
ascertain if they
were expecting to
receive any payment
from any insurance
policy, with their
answers being
recorded? Such
detailed probing
into participants’
financial situation
is highly unusual in
a clinical trial and
is possibly illegal.
In your letter, you
state that experts
from the MRC
Neurosciences and
Mental Health Board
who assessed the
quality of the
research were
satisfied that the
design was “of
high quality”;
that the MRC
reviewers and
Research Boards were
“satisfied with
the science” and
that the various
research ethics
committees that
approved the trial
design were
“satisfied with the
ethical aspects”.
The evidence that
was put before you
suggests that your
reply is a travesty
of the truth.
You state that the
Data Monitoring and
Ethics Committee (DMEC)
was “independent”.
You were provided
with evidence that
at least one member
of this three-member
committee and
members of the Trial
Steering Committee
were far from
“independent”.
Professor Tom Sensky,
for example,
believes that ME/CFS
is a somatoform
disorder and he is
on record as stating
on 10th
December 2004 at the
launch of the
Psychological
Medicine Network
that (ME)CFS
patients lack
stoicism and that
they transgress the
obligations of the
sick role. The
evidence is that the
committee members
came from one school
of thought only,
this being that
ME/CFS is a
somatoform disorder.
You acknowledge in
your letter that
“serious adverse
events were also
reported to the
Multi-Centre
Research Ethics
Committee (MREC) on
a regular basis”,
but you pass
responsibility for
the continuation of
the PACE trial onto
the DMEC, saying: “the
fact that the DMECs
have the
responsibility to
recommend stopping
the trial if patient
safety is
compromised and did
not do so in this
case suggests that
there was no
significant evidence
that the
interventions were
harmful while the
trial was running”.
You do not
address the issue of
who bears
responsibility for
any accrued harm and
lengthy relapse once
the trial has
stopped, or the fact
that participants
were obliged to sign
a disclaimer, so if
they became house-
or bed-bound as a
result of the PACE
Trial, they would
have no means of
redress.
Your letter
continues: “if
this study had not
been judged to be
scientifically
excellent and
worthwhile, the
money would have
been spent on other
research”. It
is within my
knowledge that,
despite being
supported by some
MRC reviewers,
numerous high
quality biomedical
research proposals
on ME/CFS submitted
by researchers of
the highest calibre
were consistently
rejected by
psychiatrist
reviewers from the
Mental Health Board.
I am therefore
convinced that it is
not a question of
the excellence of
the science at all,
but of the
prevailing bias of
the psychiatric
lobby who control
the Mental Health
Board and thus
control research on
ME/CFS.
Other issues that
you have failed to
address include the
fact that the PACE
Trial seems not to
have adhered to the
Declaration of
Helsinki, for
example, the PACE
Trial was not based
on a thorough
knowledge of the
existing scientific
literature, which
was simply ignored
or dismissed;
participants’
confidential data
was not kept
securely and was
stolen but
participants were
not informed of
this, and
participants were
not informed of the
potential adverse
consequences of
aerobic exercise,
all of which breach
the Declaration of
Helsinki with which
the MRC is obliged
to comply.
It cannot be
reiterated enough
that many people –
including patients
with ME/CFS, their
families, academics,
medical scientists,
informed clinicians
and senior
politicians
including the Deputy
Prime Minister – are
deeply dismayed by
the apparent abuse
of the scientific
process that seems
to have been
perpetrated by the
MRC itself, by the
Principal
Investigators and
indeed by all those
involved with the
PACE Trial and also
by NICE.
Wessely School
psychiatrists are
not neurologists,
immunologists,
neuroendocrine,
vascular medicine,
or nuclear medicine
experts, all of
which are outside
their area of
expertise, so how do
they justify their
involvement with --
and catchment of --
patients whose
disease processes
affect multiple
organs and systems,
given that
psychiatrists are
not qualified to
investigate or
explain complex
organic diseases for
which there is as
yet no definitive
diagnostic test?
As I
pointed out in my
report, It is
salutary to recall
the words of the
Presiding Officer
(Speaker) of the
Scottish Parliament
delivered at the ME
Research UK
international
research conference
on 25th
May 2007 in
Edinburgh; Mr Alex
Fergusson MSP said
he had been
contacted by a
constituent asking
for help: “She’s
had ME for some time
and been refused
Disability Living
Allowance and the
State support that
comes along with
that on the grounds
that whilst she has
been recognised as
having ME, she has
not sought or been
given psychiatric
treatment. Now
that to my mind
absolutely sums up
the principal
concerns of the
Scottish Cross Party
Group on ME, which
is that the cold
grip of psychiatry
is still far too
deeply rooted in the
world of ME”.
The numbers of such
cases in the UK are
incalculable.
This reply to your
wholly inadequate
response to my
complaint merely
re-visits some of
the concerns set out
in that complaint
which you have not
addressed and does
not consider issues
which will be
addressed once the
PACE Trial results
are published.
Finally, I mention a
forthcoming
documentary about
ME/CFS (Voices
from the Shadows,
produced by Josh
Biggs and Natalie
Boulton, in which I
am privileged to
feature). In this
documentary, which
is intensely moving
and profoundly
disturbing,
Professor Leonard
Jason (speaking in
the UK [funded
by Invest in
ME whilst attending
the 5th Invest in ME
International ME/CFS
Conference 2010]) is blunt,
stating: “We have
a national
catastrophe on our
hands”. Indeed
so, and it is a
catastrophe to which
the MRC should be
deeply ashamed to
have contributed.
Please direct any
replies to this
letter to my home
address above.
Yours
sincerely
Malcolm Hooper
Copied by email to
Dr Morven Roberts,
Trials Portfolio
Manager, MRC
Copied by email to
The Rt Hon David
Willetts MP,
Minister of State
for Business,
Innovation & Skills
Further reading:
Invest in ME Communication with
CMO
Magical Medicine - How to Make a Disease
Disappear
Invest in ME Communications with the UK Secretary of State
for Health/Department of Health
The UK Chief Medical
Officer 1998 - 2010 - A Testament to
Failure
Recommendations from the CMO's Working Group of 2002 - A
Review of the Status as at January 2007
-
click here
Accountability - The CMO - A Time for Change (June
2008) -
click here
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