The British Medical Journal (BMJ)
published a report of the 6th Invest in ME
International ME/CFS Conference in May 2011 along with other
editorial and comment regarding ME
[1].
The BMJ had been invited by Invest
in ME as guests so that they could become acquainted with the
latest biomedical research into ME. Invest in ME had invited the
BMJ the previous year, although the invitation was declined.
The timing and the tone of the
articles published by the BMJ ought to be a source of disquiet
in medical circles. It seems that nothing has changed in the BMJ with
regard to ME – a lack of any credible analysis is compounded by
same-old dogma which has characterised the BMJ editorials for
some time.
We hoped that the BMJ, who
previously had not distinguished themselves in objective
coverage of ME research or comment, might be educated by the
research which has been going on.
The BMJ decided to send Dr Trish
Groves, a Deputy Editor at the BMJ and a psychiatrist by
training.
Dr Groves subsequently published her
comments about the conference, along with other articles about
ME which were published by the BMJ at the same time.
Unfortunately, Dr Groves arrived late for the conference and missed
completely the keynote speech from Annette Whittemore of the WPI
and possibly at least a large part of Dr Bell’s
presentation.
Invest in ME’s “stance against the recent PACE trial” – if that is
what we have – is based purely on the desire to encourage proper scientific research
into a disease for which funding has been starved and about
which the media have been misinforming the public for decades.
If Dr Groves had been punctual and
arrived at the start, and taken her seat in the front row which
IiME had reserved for her along with all the presenters, she may have heard the theme
more clearly – as our attempt to move things on. It would have
been beneficial
if Dr Groves had read some of the biomedical research papers on
ME beforehand?
The problem of lack of clinical
trials is just that – health services do not invest in
biomedical research into ME to provide a basis for clinical
trials for ME – this is what we want and need - and the state of
research needs to be allied to a willingness to bring forward
clinical trials for patients for whom there is
little progress. This has been the same theme as expounded by
the WPI.
It is strange that Dr Groves finds
the conference difficult to follow. Most patients have been attending our
conferences for the past six years and heard similarly "highly
technical language" in the
presentations given and have found them useful. Many patients are
doctors or scientists themselves. This was a biomedical research
conference after all - and we wondered what exactly the BMJ were
thinking of if they could not send somebody with enough
knowledge to be able to evaluate the presentations. What a strange situation that
the designated BMJ attendee was not qualified to understand the
research on show. How is it possible for the BMJ to pass any
reliable comment on ME if they cannot understand the science?
What does this say about any editorial comment from the BMJ in
the future?
The presentations were hardly
disparate to those who follow the biomedical model of ME. They showed the variety of
biomedical research and experience by mainly privately funded
research.
The keynote speech was made by the
President of the newest and most radical enterprise which has
come into research ME in the last thirty years. Providing a
description of the aims of the WPI and the needs of patients
seemed, to us, to be a good way to begin the conference. As we
described beforehand translational biomedical research is the
aim for new ventures – taking treatments from the lab to the
bedside.
But of course Dr Groves missed this
all.
Dr David Bell recounted 30 years of
experience in ME research and examining especially children
affected by ME.
Dr Andreas Kogelnik showed the new
technology available to help treat and research ME.
Dr John Chia discussed his research and
treatment options regarding enteroviruses.
Professor Olaf Mella and Dr Oystein Fluge presented
ground-breaking research and results of clinical trials using
the Rituximab drug used for treating cancer patients.
Dr James Baraniuk presented research
involving proteomics in ME and gulf-war
illness (both diseases refuted as
real by the Wessely school psychiatrists whom the BMJ regularly
support).
Professor Geoffrey Burnstock was
brought in as a late addition due to the promising work
regarding purinergic signalling
and ME(CFS) as shown by Drs Kathleen and Alan Light. The IiME conference occurs once
per year and we need to ensure that all good research is given a
platform if it helps to improve knowledge. We also believe this
will prove useful in ME research in the future and Professor Burnstock brought with him vast experience of the problems and
issues with challenging the establishment views in science.
Professor Kenny De Meirleir is Europe’s most experienced ME
researcher and has performed extensive investigations on patients from
many different countries.
Professor Simon Carding showed the
research promise of the proposed development of an examination
and research facility in Norfolk. His
research showed clear possibilities with examining gut
inflammation.
Dr Judy Mikovits discussed XMRV and
clinical trials – followed by Dr Wilfried Bieger who showed the
prevalence of XMRV in Germany.
Dr Groves called these a “
disparate
collection of small scale laboratory studies”.
Perhaps if the BMJ had
decided to attend one of the previous conferences to which they
were invited then they would have been primed with better
information and Dr Groves would have
heard the research around the themes of severe ME, sub grouping
in ME and new viral research.
We wondered why Dr Groves did not ask why there
had been no government funding for these studies?
Dr Groves believed that a subgroup of ME patients
are treatable with CBT or GET. The PACE trials are known
to have used flawed diagnostic protocols and changes of the trial basics
were made half-way through the trial. The PACE Trial is indefensible
(see
The PACE Trial: An Expression of Concern) by anyone applying
a rational analysis of it. Performed by known vested interests who
are, or have worked for insurance companies or advised the DWP
on benefits, these are staggeringly unrepresentative of ME.
They do not stand up to rigorous analysis.
The PACE trial has been shown to
have been a complete waste of money with poor procedural
standards being followed and little control exerted and it seems
that the only people who have found the PACE Trial to be without
fault are the psychiatrists who performed the studies, the
people who funded them, the organisation that published the
results and the collection of vested
interests who benefit from nothing progressing with ME.
As another, more informed,
commentator (JT) has remarked
“….The trial was not studying the neurological
disease ME/CFS but people with chronic fatigue in
the absence of neurological signs, or “CFS/ME”….If
the Oxford criteria had been applied correctly there
would be no people present with ME….People should
now be aware that the results were not clinically
significant, and there remains little evidence to
support the use of CBT and GET in the management of
ME/CFS”
It was a pity that Dr Groves
did not do her research beforehand. She admits that “I
hadn’t understood many of the presentations
”.
But the lack of
understanding goes far deeper than a lack of scientific
experience.
Dr Groves seems typical of the BMJ when
it comes to ME – an organisation that refuses to listen to
patients, that refuses to learn from biomedical research that is
being performed, that refuses to change from being an
old-fashioned, out of date, redundant organisation that offers
nothing for ME patients and is wedded solidly to flawed science
and bogus research.
But patients and support groups have long since given up
hope of any unbiased, objective reporting on ME from the BMJ.
Dr Groves decried the "awful
behaviour” – in this she referred to a couple of attendees in the
audience (severely affected ME patients) who heckled her when
she began to praise the PACE Trial.
Patients are rightfully angry because they have been patronised
and misrepresented for far too long and seen their wishes
ignored. Dr Groves wrote of
“
Personal
abuse and threats from a vociferous minority to doctors and
scientists researching CFS/ME are indefensible". This is
strange. We have not heard of other researchers who have spoken
at our conferences experiencing personal abuse or threats.
Criticism
by patients
of the way in which research and reporting of ME has been
conducted by those in power are seen by establishment organisations as a
negative thing. Yet what would one expect patients with HIV or
cancer to do if their illness was denied as existing and if all they were offered was CBT and GET and
if all
public funding for research would go to researchers who try to
establish coping strategies.
If organisations such as the BMJ really were interested in
patients then they would not continue to publish erroneous and
biased articles which have no basis in fact.
Good doctors and researchers listen
to the patients and learn from them. Patients do not complain if
they are treated with respect.
Dr Groves' "open mind" seems also to include selective amnesia.
The same BMJ bias and extreme ignorance of the subject matter
continues to demonstrate their absolute void of understanding
about this disease. She speculates about the "behaviour" of some
patients being attributable to other patients objecting to the
PACE trials. This shows no comprehension of the real issues.
CBT has been rejected by Norway[4], by Belgium [5] and by most
UK patient groups who have not received government funding to
support their policies.
It is ironic that Dr Groves was seen
to Tweet later – "Where are the Patients?". If only she had opened her eyes,
opened her mind and listened – the patients were in front of
her!
The arrogance shown by Dr Groves in
her appearance in the plenary session was disappointing, yet
with hindsight, probably predictable.
Dr Groves finally asks “Why
can’t CFS/ME be like other common chronic conditions”.
Indeed – isn’t this what IiME have been saying for years? Isn’t this what patients, their
carers and those researchers and clinicians who actually look at
this disease have been demanding?
How ironic that Dr Groves poses that question which is so
central to this disease and yet does
not understand that it is precisely people like her and
organisations such as the BMJ who systematically deny that
possibility.
We wonder how many other common chronic conditions are starved
of research funding, or are denied as existing by the very
people who collect all the accolades of "ME Expert" from a
sycophantic media, or whose patients are described in this way -
“The description given at the Mayo Clinic remains accurate: ‘The
average doctor will see they are neurotic and he will often be
disgusted with them’ ”
(Professor
Simon Wessely - In: Psychological Disorders in General Medical
Settings, ed: Sartorius et al; Hogrefe & Huber, 1990)
We had hoped that the BMJ, having
finally accepted another invitation to our conference, would
this time come prepared by having read some biomedical research
papers by the presenters and listened to their research –
research that leads to hope that the nightmare for ME patients
might be ending.
In an
accompanying article Dr Godlee picks up the same question Dr
Groves had disingenuously posed - “Why
can’t chronic fatigue syndrome/myalgic encephalitis be like
other common chronic conditions”
[2]. Dr Godlee demonstrates the shocking hypocrisy of the BMJ.
The BMJ and the Lancet have been instrumental for so long in
denying any chance of this happening.
Dr Godlee writes of how to “…find
ways to respond to patients”
– one wonders if are really understanding the question they are
asking.
Dr Godlee’s use of emotive language “But
emotions were running high”
belies the true situation. Our invitation to the BMJ to another
conference
had been
extended to Dr Godlee (she failed to turn up the previous year).
Dr Godlee states that Dr Groves “…had
accepted the organisers’ invitation with an open mind”.
We
find this at odds with our impression. To come with an open mind would mean listening and learning.
What we see from the BMJ instead is, unfortunately, a closed
view lacking in any semblance or acknowledgement that biomedical
research is paving the way for these “clear explanations and
cures” which Dr Godlee professes to want.
This was the 6th Invest in ME conference. To state
that “..
emotions were running high”
is pure spin. What triggered a few patients’ responses was the
arrogance with which Dr Groves delivered her comments –
seemingly dismissing the years of experience from the
researchers with whom she was sharing the platform. The BMJ ignore the complaints about the PACE trial – instead trawling out the same tired old statement
that “The
PACE trial had just found that cognitive therapy and graded
exercise therapy can help, to the fury of patient groups who
dispute a psychiatric basis for the condition.”
What patient group is interested in their members remaining ill?
If the PACE trials were really good science then they would be
welcomed by patients. But they do not stand up to thorough analysis and
the frustration of patients is again apparent when this
nonsensical dross is again forced upon them and the healthcare
system by vested interests.
The issue which Drs Godlee and Groves cannot identify with, cannot
understand or even acknowledge is that patients, now armed with
information about real research being carried out – thanks to
conferences such as the IiME and the resultant DVDs – are no
longer meekly going to accept the non-science and status quo
which establishment vehicles such as the BMJ and the Lancet
serve up. Patients are now becoming empowered with this
information and can fight those elements in the media and the
healthcare services and the establishment who seek to obfuscate,
deny and ignore the real research being carried out.
The blitz of material suddenly offered by the BMJ, in the wake
of their sister organisation the Lancet’s blind intransigence in
accepting any views condemning the lack of real science in PACE,
is telling.
The comment that “The
result is an unproductive standoff”
belies the role that the BMJ has had in maintaining this
"standoff". It is the fault of these old, out of date organisations,
non-reformist publications which fail to understand that it is
patients who are important – not editors’ reputations or the status
of failed psychiatrists.
Dr Godlee's statement is not borne out by the facts. Progress in research has
been stifled because of the stranglehold which these certain
interests have established over this disease, where no
research funding is directed toward proper research aimed at
finding causality and where a fabricated and manipulated media
is used to direct fatuous comments about the disease and those
who suffer from it. Progress has been denied by a supposedly independent Medical
Research Council which has proven to be nothing of the sort –
where funding for research into ME has been granted only to
those few figures (often working for insurance companies)
who have monopolised the debate about ME – promoting their
view that ME is a somatoform illness treated by the
pet theories of a few individuals with no real proof. Progress
has been stifled by an inarticulate media who regularly ignore
the real suffering and merely trot out the same tired clichés
and out-of-date research which the Science Media Centre
(controlled and influenced by some of those who depict ME as a
somatoform illness) provide. The BMJ
are seemingly willing partners in this distortion.
How ironic that ME patients might also feel safer
if Professor Wessely moved to Iraq or Afghanistan. Dr Godlee does not comment
on the view that "this debate" has effectively been hijacked for
a generation by those who have influenced the funding research
and the perception of ME.
If Professor Wessely were to stay in Iraq then we
feel the ME community would breathe a collective sigh of relief,
even though most knowledgeable ME observers would doubt that
this would be the end of Professor Wessely’s involvement in this
sorry state of affairs.
For years the type of research and approach
exhibited by the PACE trial, and it’s equally atrocious (and
discredited) sister
the FINE trial, have dominated research funding in UK. Now is a time that
Dr Godlee and her colleagues should
recognise as a sea change in research.
We wonder how Dr Godlee really can believe what she
writes.
What is her real role in relation to the PACE trial?
Is Dr Godlee part of the WHO Trial registration Group and, if
so, was she not aware that the PACE Trial did not conform to the
rules of that group?
And yet she must eventually be made accountable for the
damage she and her organisation are doing to a vulnerable and
ill patient population.
Indeed. But we wonder if Dr Godlee realises how disingenuous her
comments sound to a section of the population for whom she seems
to have no real idea of the tragedy that her organisation
continues to allow to be perpetuated. We would tend to believe that the vast majority
of ME patients have been systematically trodden on by forces such
as the BMJ - where all common sense is discarded to make way for
bogus science.
We can absolutely
sympathise with the two patients in the audience who railed against
the condescending tone of Dr Groves.
Dr Baraniuk, a distinguished researcher, when asked to comment
on
this topic in the plenary session said simply - ’let the audience speak’.
Nigel Hawkes article “
Dangers
of research into chronic fatigue syndrome”[3] exposes the BMJ’s real motives and agenda with regard
to ME.
Mr Hawkes is a “freelance journalist” – a term which
ME patients could be forgiven for thinking often equates
to superficial and minimalist approaches to researching a
subject. Mr Hawkes declares no
financial relationships with any organisation that might have
an interest in the submitted work in the previous three years; and no
other relationships or activities that could appear to have
influenced the submitted work.
Yet is this not the same Hawkes who was Health Editor of the
Times (who have recently published tabloid style misinformation regarding
ME) and who reported in 2006 the research by Kings College
which found that
"women are nearly three times more likely to go to their GP with
headaches than men” and “the most headache-prone group in the
study of consultations at 253 general practices during a nine
year period was women aged 15 to 24”? We wonder how far
back these links go.
Mr Hawkes’ equating a CFS researcher in the same light as a
funfair show demonstrates, immediately in the first sentence,
how easy it is to become a freelance journalist – superficial,
cheap and nasty. Surely the BMJ could have done better!
Mr Hawkes
continues to describe an unidentified group of people
who are “
conducting
a
relentless personalised attack on doctors and academics who are
trying to discover its cause and improve its treatment”. That’s quite a big leap. No proof offered – but maligning a
whole patient community is easy for a freelance journalist. His case isn’t
really helped when he uses Professor Simon Wessely of
King’s College, London, as his prime example.
Mr Hawkes reels off a number of incidents (with an
implication that these are false accusations) concerning
Professor Wessely. And then we are back to the PACE trials – the real story behind
the BMJ’s current propaganda blitz.
Mr Hawkes states that the Lancet considered the submission by Professor Hooper –
actually that seems less than correct. Read this (see Hooper’s response)
Mr Hawkes repeats Professor
Wessely's comments of a vile campaign. Mr Hawkes
seems not to have researched Professor Wessely's comments about ME. Let
us enlighten him-
“ME has never been fully accepted as a real condition, says
Simon Wessely”
(The Guardian, 21stApril
1998)
“I
will argue that ME is simply a belief,
the belief that one has an illness called ME - Microbes, Mental
Illness, The Media and ME:” The Construction of Disease - 9th Eliot Slater Memorial Lecture,
Institute of Psychiatry, London, 12 May 1994
Although IiME does not condone malicious acts of intimidation
from anywhere on any subject - whether it be from patients or
from researchers - to paint Professor Wessely as a victim is
begging belief. For years Professor Wessely has seemingly happily been the
focal point for much funding and publicity for his views on ME
and several other illnesses which leave patients’ lives
obliterated - even though his views are diametrically opposed
to the views of patients, patient groups and a great body of
researchers.
ME patients continue to wonder why psychiatrists are at all
involved in a disease recognised by the WHO and the UK
government as a neurological illness. One has to dig deeper than
Mr Hawkes has attempted to do.
Professor Wessely states that the cause of the disease, if physical, would
have been discovered by now. Yet Professor Wessely surely knows
that discovery requires funding of research and if the funding
for such research is stifled then results are more difficult to
achieve.
The PACE Trial cost £5 million pounds. One trial - £5 million.
The MRC has spent next to nothing on biomedical research into ME
– and even its latest reincarnation of the CFS Expert Panel has
taken well over two years to come up with a list of symptoms to
be researched with only £1.5 million – and even that is not
ensured to go to biomedical research.
Has he not himself sat as a referee on the MRC panel which
reviews MRC funding? Was he not behind the rejection of promising
biomedical research of recent years which the MRC refused to
fund? We would like to know if Professor Wessely has rejected biomedical
research and, if that were so, what were his reasons? We can’t be sure – because the MRC refuse to provide such
information under the Freedom of Information act. Mr Hawkes
hasn't bothered to ask this question.
When discussing the retroviral research Mr Hawkes fails to mention that the “
10 follow-up studies” on XMRV
to which he refers have not all been replications.
Surely a basic rule of science is to replicate by producing a
research study which actually replicates. Yet no discussion or
analysis of this by Mr Hawkes - a former health editor.
Further analysis of Mr
Hawke's article is of no benefit.
The hypocrisy of some of the comments in the BMJ
articles serve to illustrate either how mendacious the editorial
staff are or how truly out of touch they are with reality.
Whichever is the case they are not serving patients. When they
contribute to setting patient against physician then we wonder
how long they are allowed to continue before some action is taken.
Mr Hawkes, Drs Godlee,
Groves or any other commentator even imagine how appalled
patients are with their years of neglect, their removal of basic
human rights for proper treatment, thanks to those vested
interests which usurp funding or promote false beliefs about
this disease?
Sadly, one cannot look for such common sense or morality from
organisations such as the BMJ.
Hopefully in the not so distant future there will be an inquiry
in which medical journal publishers and editors and public grant
givers are forced to answer questions about their biases which
have held back real research into ME and thus caused unnecessary
suffering.
For an
alternative review of the
IiMEC6 conference please see Dr Rosamund Vallings’ summary [8]
and Invest in ME's Addendum [9].
