Invest in ME
responded to the request by the Press Complaints Commission for additional
information by submitting a 21 page response.
This can be
viewed as a pdf here -
September 2011
Dear Mr Yip,
In response to our submission to the Press
Complaints Commission (29th August 2011) you asked the charity to respond to the areas
of the articles about which we were concerned.
Our complaint related to recent articles in the
Times, Sunday Times, Observer, Spectator and Daily Telegraph during July and
August, all purporting to examine issues surrounding Myalgic Encephalomyelitis (ME) -
(also referred to as Chronic Fatigue Syndrome) and promoting the opinions and
views of Professor Simon Wessely of King‘s College, London,
We have included more specifics in this letter, as
you requested, and hope that you will now be able to take this
complaint forward.
Our complaint covered these areas of the Editors‘
Code of Practice.
Accuracy
Opportunity to Reply
Harassment
This Editors‘ Code also states that –
― All members of the press have a duty to maintain
the highest professional standards.
We do not believe these professional standards have
been maintained by these articles.
Here are some specific areas and statements in these
articles which we believe contravene this code.
The Sunday Times - “Shoot the medical messenger – see if that'll cure
you”
- Rod Liddle 31 July
Mr Liddle writes –
“
He
(Professor Simon Wessely) believes the illness, which results in debilitating tiredness, aches and pains and so on,
probably has a neurological basis.”
However, this is not borne out by facts. Professor
Simon Wessely is on record as stating the following [1] and [2] –
These quotes seem to prove that Mr Liddle‘s
statement is inaccurate and misleading to the public. He should have researched
far more before writing the above statement.
Mr Liddle writes –
―As a consequence, he (
Professor
Wessely) has received
menacing phone calls and even death threats from ―extremist ME
sufferers. So too has another researcher, Prof Myra McClure, who says she
will now have nothing more to do with the whole business because
she‘s fed up with being abused.
These threats are allegations. Mr Liddle offers no
proof of the incidents and neither does he offer any evidence that these were
―extremist ME sufferers who allegedly made such threats. They could just as well
have been made by freelance journalists looking for a story.
Mr Liddle writes –
―It seems that those who suffer from ME, which used
to be known as yuppie flu, do not wish to be stigmatised as
malingering mentals, which is what they fear will happen if the illness turns out
to have a psychiatric rather than biomedical basis.
Mr Liddle repeats the term ―yuppie flu – there is
no reason to do so – it is merely an old-fashioned, inaccurate and disparaging
term nowadays used to further enforce a discriminatory view against people
suffering from this disease.
The rest of that statement is conjecture. How can
one blame a whole community of patients (estimated to be up to 250,000
in UK) as not wishing to be stigmatised and what they fear will happen if the
disease is psychiatric?
There is no basis for this statement and it is
wildly inaccurate from our own experiences as an ME charity. Mr Liddle offers no
proof of this statement and misleads the public.
In our experience this is not the fear of ME
patients. Mr Liddle has not interviewed any ME patients to substantiate this
comment. He offers no evidence to support this assertion. This type of
loose comment is intimidatory and discriminatory. It maligns a whole section of
the population, who already have much to cope with due to this disease, with no
proof or scientific research provided.
Mr Liddle writes about ―
the foaming paranoia on this
site (the MEA web site) and ―The truth about ME, they (MEA)
assert, is that it is the consequence of some sort of weird retrovirus.
This is not what the MEA website states. The MEA are
not known to be avid supporters of the Whittemore-Peterson Institute (who
jointly discovered an association between the XMRV retrovirus and ME) or
of the research which promotes the XMRV retrovirus as a cause of ME. The
retroviral causality is only one possibility which has been discovered by
biomedical research. Mr Liddle has not read the research or the other streams of
possible viral, and immune dysfunction research.
Mr Liddle, in his inaccurate writing, continues this
one-sided barrage of ill-considered and erroneous reporting –
―Some sufferers cling with grim determination to a
non-existent biomedical explanation
Mr Liddle does not refer to the reams of biomedical
research papers which prove the disease is of organic origin. Why not? How can
he substantiate the claim of a ―non-existent biomedical explanation ? Invest in
ME have organised and hosted six international biomedical conferences in
London which have provided a large amount of peer-reviewed biomedical research
which has led to biomedical explanation for this disease. A review of
papers in PubMed would also have corrected Mr Liddle‘s inaccurate
statement.
Mr Liddle writes of patient "
paranoia" yet offers
nothing to substantiate this.
This is discriminatory, insulting and pejorative.
Where is the proof of paranoia?
The Editors‘ Code of Practice states that -
iii) Preventing the public from being misled by an
action or statement of an individual or organisation.
This is obviously not the case with the above
statements by Mr Liddle and those of Professor Wessely which Mr Liddle has dropped
into in his article while denigrating sick and vulnerable people who suffer
from a neurological disease as recognised by the WHO and the UK government.
We believe that Mr Liddle is not only feeding the
public incorrect information and that the editor of the Times has failed to exercise
due diligence in ensuring that this article was factual.
We therefore submit that this article was not only
biased propaganda but that the Editors‘ Code of Practice was infringed.
The Editors‘ Code of Practice states that -
i) The Press must take care not to publish
inaccurate, misleading or distorted information,
ii) The Press, whilst free to be partisan, must
distinguish clearly between comment, conjecture and fact.
This was not done. Both of the above Code points
were infringed by this article.
The Times - Interview with Professor Simon Wessely - (Stefanie Marsh -6 August 2011)
Ms Stefanie Marsh states in her article -
―He (Professor Wessely) is Britain‘s foremost
authority on ME, or chronic fatigue syndrome (CFS) as it is also known
This is incorrect and misinforms the public.
Professor Wessely is not Britain‘s foremost
authority on ME. How can a psychiatrist be a foremost expert in a neurological
illness?
Again Ms Marsh repeats the term ―yuppie flu in
relation to this disease. There is no need or reason to do this other than to repeat
the biased propaganda put out by the media to denigrate ME patients. Would Ms
Marsh or Mr Liddle refer to MS patients as suffering from ―women‘s hysteria or
HIV/AIDS patients as having ―gay men‘s disease ? If they did the public outrage
would be enormous as it indeed should be. The same should apply to ME.
Ms Marsh states that -
"For it was his (
Professor
Wessely’s) research that
proved ME was not, as the general public, many doctors and certainly all
employers once imagined, ―yuppie flu .
This is untrue. Professor Wessely has not done
anything to allay the misperception that ME is an organic illness. We
refer to the earlier quotes by Professor Wessely which were mentioned above and
which corroborate this.
Ms Marsh states that
―He (
Professor
Wessely) discovered that by
combining cognitive behavioural therapy and light exercise a third of
patients make a full recovery.
This is contentious, misleading and has not been
researched properly.
There is no evidence to show that a third of
patients make a full recovery. The Belgian government evaluated the outcome of CBT
(and Graded Exercise (GET)) at their CFS centres. Their conclusion was
that rehabilitation with CBT/GET could not be considered curative [3].
Patients were working less not more after these therapies. The recent publicly
funded PACE Trial study published by the Lancet claimed that a third of
patients showed improvement.
However the concept of ―normal used by this study
does not mean good health or recovery. One also has to look at the diagnostic
criteria used. Professor Wessely uses the Oxford criteria – which are
criteria designed and implemented by psychiatrists and which exclude patients
suffering from a neurological illness (remember the WHO and UK government position on
this).
The statement by Ms Marsh is totally misleading for
the public and is erroneous.
Professor Wessely has also stated elsewhere that his
therapies are not curative.
Ms Marsh states
―Before his work, the standard treatment for ME was
rest, with the result that many patients were left incapacitated. Many
health professionals agree that he has done more for the sufferers of ME
than any other individual, not just in Britain but worldwide.
There are many other patients, patient groups,
researchers and clinicians and healthcare experts who would also agree that the
views about ME which have been expressed by the "Wessely School" of
psychiatrists have done untold damage in promoting ME as a somatoform illness, thus
influencing healthcare services, research institutes, research funding and
the media. The statement by Ms Marsh is, we feel, misleading. Patients have been
left incapacitated by the enforcement of graded exercise treatment which is
part of the legacy of this psychiatric approach to treating ME. In our opinion
many healthcare professionals could also be said to agree that
Professor Wessely has done more damage to ME sufferers than any other individual.
Ms Marsh allows this conjecture to continue as
though they were facts. She writes –
―Such was the vitriol and the constant ratcheting up
of the threats emanating from the fringes that, ten years ago,
Professor Wessely chose to give up his research.
Why does the journalist not research properly and
state that Professor Wessely is still involved in CFS and ME research – something
Professor Wessely has stated is not the case? The reporter and editor have
allowed misinformation to be published. This would have easily been avoided if
the reporter had performed even a cursory glance at PubMed and research into
ME. She would have seen Professor Wessely‘s name associated with recent
research into ME.
Ms Marsh allows Professor Wessely to comment -
―They‘re (ME activists) not as bad as the animal
liberation people, Professor Wessely tells me. ―But they‘re just as
fanatical. It‘s constant stalking, harassment, attempts at intimidation.
This is extreme language by Professor Wessely which
is allowed to go unchallenged by the reporter, the editor and the
newspaper. This shows a lapse in editorial integrity.
It is Professor Wessely‘s views on ME and ME
patients that seem to be fanatical and Ms Marsh has not been impartial enough to
present this – unless the readers were all assumed to be able to read some
subliminal message which Ms Marsh was attempting to impart by repeating
Professor Wessely‘s opinions.
Ms Marsh allows further distortion by Professor
Wessely when she quotes him as saying –
―So there is no threat to their status or
self-esteem. But CFS sufferers are in a different place.
These are just Professor Wessely‘s opinion and
allegations. No proof is offered.
Yet these unchallenged remarks further denigrate
sick and vulnerable people.
Ms Marsh writes -
―And the problem for some is that Professor Wessely
is a psychiatrist at all. ―I think finally, fundamentally, it is that
they cannot stomach the thought that this might be a, quote, ‗psychiatric
disorder‘. By which they mean — not what I mean — ‗it‘s imaginary‘, ‗it
doesn‘t exist‘, they are ‗malingerers‘.
This is Professor Wessely‘s view and
the editor has not given an opportunity for an ME organisation to receive equal space to provide
the correct view.
The fact is that ME is a neurological illness and is
recognised as such by the Department of Health.
There is a legal obligation for the Department of
Health to provide ICD data to the WHO for international comparison.
What classification does Professor Wessely use for
ME and how does this affect the NHS Data Dictionary?
Why does Ms Marsh not state this in order to redress
the balance between fact and opinion?
Ms Marsh writes
―There was a theory that ME was a retrovirus but it
fell apart when tested.
This is misinformation and incorrect.
The research is still ongoing involving the National
Institute of Health in USA.
Ms Marsh allows Professor Wessely to comment -
―Like it or not, CFS is not simply an illness, but a
cultural phenomenon and metaphor for our times.
This is an outrageous statement to leave
unchallenged and shows Professor Wessely‘s true beliefs. But the reporter and the
editor do not provide references to research which have dismantled Professor
Wessely‘s theories. Why?
Ms Marsh allows Professor Wessely to further distort
the public perception of ME -
―A metaphor that does not apparently translate into
non-English speaking countries. ―ME is virtually unknown in France, Italy
and Spain. Only a small number of doctors will make this diagnosis. So
most doctors will not call it this. They will call it neurasthenia, they
might call it depression, they might call it stress. …….When we gave them
descriptions of our typical clinical cases here in Britain, they didn‘t
recognise them. They said, ‗Nah, we haven‘t seen that‘.
And again –
―Certainly we know that in Italy we do know only a
small number of doctors will make this diagnosis.
These statements are totally incorrect and could
have been refuted with some cursory research by the journalist. We direct you to
the letter to the Times by the European ME Alliance (EMEA) [4] which shows that
ME is known and accepted in these countries. The reporter should
have verified this instead of passing on misinformation.
The editor of the Times
did not allow the EMEA letter to be printed. This is gross negligence by the
editor and the reporter. It allows the public to be misinformed.
European governments, as with the UK, must adhere to
the WHO classification of ME as a neurological illness.
Observer “Chronic fatigue syndrome researchers face death
threats from militants
Robin
McKie, 21 August 2011)
Mr McKie continues the media panoply of pro-Wessely
publicity with this article and repeats much of the distortion which the
previous articles have created.
He writes -
―It is the latter group (
psychiatrists
who state that ME is a psychological illness)
that has become the subject of extremists' attacks. The antagonists hate any suggestion of a psychological
component and insist it is due to external causes, in particular viruses.
In the case of McClure, her "crime" was to publish a paper indicating that
early studies linking the syndrome to the virus XMRV were wrong and the result
of laboratory contamination. So furious was the reaction that she
had to withdraw from a US collaboration because she was warned she might
be shot.
No comment is made on the number of alleged
activists or extremists in relation to the number of ME patients. Was it one or two or
three or more? The journalist does not know because the journalist has
not researched this – merely taken Professor Wessely‘s viewpoint. Yet the
statements make it seem as though there was a huge number. This is
pejorative. There is no proof provided - only allegations.
Mr McKie continues-
―A similar hate campaign was triggered by a study
published in the LANCET earlier this year. It suggested that a
psychological technique known as cognitive behavioural therapy could help
some sufferers. This produced furious attacks on the scientists involved,
including Michael Sharpe, professor of psychological medicine at
Oxford University. He had already been stalked by one woman who was
subsequently found to be carrying a knife at one of his lectures.
Why has the legitimate critique of the Lancet
publication not been reported?
Why
has the reporter not
quoted the extensive number of patient organisations who have rejected the Lancet paper? Why does the
reporter only concentrate on anecdotal evidence from vested interests? Was the
alleged knife-carrying woman reported to police? What evidence is there of
a ―hate campaign .
Mr McKie writes -
"The tragedy is that this tiny group of activists
are driving young scientists from working in the field," said Sharpe.
"In the end, these campaigns are only going to harm patients."
There is no proof of this statement. Just Michael
Sharpe‘s allegation. The journalist hasn‘t explored the number of biomedical
research applications rejected by the Medical Research Council. This is
the real reason for lack of biomedical research into ME. All the public funding
has gone to psychiatrists.
Why does Mr McKie not examine this evidence? Why has
Mr McKie not looked at threats to Professor Malcolm Hooper who has
consistently and thoroughly criticised the role of Professor Wessely, Sharpe and
their colleagues in denying the existence of ME as an organic illness?
Mr McKie quotes a director at the Science Media
Centre stating that these alleged threats are damaging to society. The
hypocrisy of this statement being allowed in print is not lost on ME patients.
The Science Media Centre‘s Science Advisory Panel
includes Professor Simon Wessely [5].
This shows biased
reporting.
Mr McKie writes -
―
He
(Professor Wessely) gave up his research on chronic fatigue syndrome several years ago
As stated earlier Professor Wessely has still been
involved in research – including a paper authored by Professor McClure on
2010 which was quoted.
The reporter should have researched that fact. Just
a cursory look on PubMed brings Wesseley‘s name up in several papers from
2011.
Spectator “Mind The Gap”
– Professor Wessely -26 August
The Spectator merely allows Professor Wessely to
write what he wishes and continue the publicity wave of pro-Wessely
propaganda in the media. One could be forgiven for thinking that Professor Wessely had
a book which was imminently to be published!!
Where is the opportunity for an ME organisation to
respond?
The Spectator allows Professor Wessely to write –
―But there was. The more I saw, the more convinced I
became that the condition was a genuine, serious, debilitating
illness.
This, we feel, is disingenuous and not supported by
Professor Wessely‘s recorded comments. We repeat the earlier quotes
which were mentioned and
made by Professor Wessely –
The editor allows Professor Wessely to continue –
―In 2007, some 20 years after we started, the
National Institute for Health and Clinical Excellence approved both
treatments as safe and effective.
Professor Wessely does not state, and neither does
the editor, that practically every ME patient organisation (except those
accepting money to toe the line with government policy) objected to and rejected
these NICE guidelines.
Professor Wessely does not mention that NICE were
taken to a judicial review by ME patients objecting to the NICE guidelines.
Professor Wessely does not mention that NICE ignored all biomedical research
into ME. This is fact.
We believe this article misleads the public.
The editor allows Professor Wessely to continue –
―The evidence is that, like most illnesses, CFS is a
mixture of the physical and the psychological.
Where is the evidence? It is here that we need to
have the views of patients represented and of other scientists and researchers
who disagree with Professor Wessely‘s views.
Also this goes against Professor Wessely‘s stated
comments which were mentioned earlier.
The editor allows Professor Wessely to continue –
―For the outraged minority, however, being referred
to a psychiatrist or psychologist is tantamount to being told that the
symptoms are imaginary.
This is disingenuous as Professor Wessely has stated
that "
ME
IS SIMPLY A BELIEF".
Patients object to being referred to a psychiatrist
when they have a neurological illness that needs to be examined and treated
accordingly. MS patients, for example, are not primarily referred to
psychiatrists.
The editor allows Professor Wessely to continue –
―At present, the treatments pioneered at Queen‘s
Square are the best we have.
This is just opinion – not borne out by facts. It
misleads the public.
The editor allows Professor Wessely to continue –
―And last, the malign tactics of the minority have
helped to delay scientific progress: numerous scientists in other fields,
including neurology, immunology and virology, have dipped their toes in
the water of CFS, been scalded and given up.
It is also true to point out that many scientists
would be willing to perform ME research had the ―Wessely School of influence not
stopped funding by MRC into biomedical research. Why in all of these articles
have the editors not sought quotes from these immunologists, neurologists and
virologists to find out the real reason of them leaving the field?
Professor Wessely is allowed to write -
―The worst is the deliberate falsification of what
we have said or written: quotes are circulated with the essential word ‗not‘
deleted, for instance. And transcripts of our speeches are sometimes
altered so that ‗yes‘ becomes ‗no‘.
Professor Wessely‘s views and comments about ME are
on public record.
Asking questions from ethics committees is a
legitimate avenue for patients to express their concerns and seek clarification on
matters that affect them.
Professor Wessely writes -
―The World Health Organisation, which runs something
known as the International Classification of Diseases, a
Sisyphean attempt to bring order to diagnostic chaos, is now working on yet
another revision. They should think seriously about following the MRC lead
and merging psychiatry and neurology into one category. This
would rid us of the 'all in the mind‘ slur, and let us get on with our jobs —
improving the treatment of patients and their illnesses.
Why is Professor Wessely allowed his view without
proper reply from patient groups? If Professor Wesley‘s views are accepted
then why aren‘t MS or epilepsy patients seen primarily by psychiatrists?
In a BMJ podcast of 5th March 2010 Professor Wessely
stated (in relation to the retroviral association with ME as determined from
the research by the Whittemore-Peterson Institute, Cleveland Clinic and
the National Cancer Institute) -
―We‘re not going to go on doing more and more tests
to find what was the virus, because frankly even if we found it
there‘s nothing we‘re going to do about it, we‘re in the business of
rehabilitation. [6]
It would seem that Professor Wessely would not
change his methods of ―improving the treatment of (ME) patients no matter
if neurology were to be
merged with psychiatry. Professor Wessely rejects
objective neurological testing for ME patients.
We submit that by allowing Professor Wessely to
publicise his views in this article, without allowing the ME community to
respond, that the Spectator has contravened the Editors‘ Code of Practice on a
number of points. This article has allowed the public to be misled and risked
denigrating further a section of the public who suffer from a neurological illness as
categorised by the WHO and officially accepted as such by the UK government.
The Spectator has allowed prejudiced views on ME to be publicised without
proper attention to detail. The public have not been served by this article. A
section of the community has been discriminated against without an opportunity
being given to respond.
Daily Telegraph - "Protestors have got it all wrong on ME‟ 27 August
2011
-Max Pemberton
Mr Pemberton writes -
―That people feel threatened by the idea that ME has
a psychological component says a lot about the stigma of mental
illness.
There is no evidence to support this statement.
Where has this been proven that ME patients feel threatened?
Mr Pemberton writes -
―The reason for their behaviour is that research is
focusing on the psychological basis of the condition; as a result of
the findings, ME is now considered to have a significant psychiatric
component. While the protesters represent only a tiny fraction of those
with ME, it is true to say that many others feel strongly about the suggestion
that it has any basis in psychology at all.
This is totally incorrect. There is no scientific
evidence for this statement. If Mr Pemberton had researched and reported the evidence
he would have seen that objections to Professor Wessely are due to the
statements and actions of Professor Wessely over the years – where he
consistently denies that ME exists.
Professor Wessely studies the so called Oxford
Criteria defined CFS (not used outside UK) which has nothing to do with the
Department of Health and NHS endorsed ME as classified in ICD10-G93.3
Mr Pemberton writes -
―Many claim that their condition is the result of a
viral infection or exposure to environmental toxins. Research to date
has failed to support conclusively this hypothesis, much to the chagrin of
sufferers, who feel frustrated and angry that doctors remain sceptical
that this is the actual cause.
This is untrue. Much biomedical research does
support this and many researchers believe the cause of ME is of a
virological origin.
Mr Pemberton writes -
―In addition, years of research have already been
undertaken, which has produced underwhelming, inconclusive results to
support a biomedical cause. It wasn‘t until psychiatrists such as Prof
Wessely started treating the condition psychologically that real progress was
made.
This misses the point completely that the evidence
is not underwhelming – the funding for biomedical research is underwhelming.
The psychiatrists who share Professor Wessely‘s views have taken the lion‘s
share of the funding on ME research – totally for their psychiatric theories
which remain unproven.
Mr Pemberton writes -
"The current gold standard for treatment, as
supported by the National Institute for Health and Clinical Excellence (Nice),
is a combination of supervised exercise and talking therapies."
This is untrue. Practically all ME patient
organisations rejected the NICE guidelines. They cannot be said to be a gold
standard, or current.
Mr Pemberton writes -
―A major British trial published in The Lancet found
that at least one in three patients with ME improved or recovered using
this approach. The biggest hurdle faced by doctors is persuading people
to actually attend and engage with treatment. They resist because they
refuse to be seen as mentally unwell. It does seem bizarre that those
with such a debilitating disease would refuse treatment because
it was given by a psychiatrist.
Mr Pemberton omits the fact that the Lancet
publication is based on flawed research which moved the goalposts for the research
criteria midway through the trial. One only needs to compare the trial
registration documents and the final published research to see the flaws in this
expensive publicly-funded study and the claims they make.
Mr Pemberton writes -
―Microbiologists and immunologists have been unable
to help ME patients, and so psychiatrists have become involved. But that
is considered outrageous. People refuse to go to outpatient
appointments and refuse treatment, despite evidence that it works.
Accusations are thrown around that the medical profession is not taking them
seriously. But, just because doctors frame a condition in terms the sufferer does
not like, does not mean doctors are not taking it seriously. That
people feel threatened by the idea that ME has a psychological component says
a lot about the stigma of mental illness.
This is just misinformation based on ignorance, poor
research for the article or manipulation/cooperation to promote a view of ME
which is incorrectly supported by research. ME patients are not
threatened by the idea that ME has a psychological component. ME patients just do not
want their health treated with misinformation and obfuscation of the truth.
Mr Pemberton writes -
―It‘s an attitude that dogs the lives of many people
living with mental health problems. Yet, for me, a psychological
explanation is a very real one. It doesn‘t mean someone is faking it; it
doesn‘t mean the illness oesn‘t exist. It also doesn‘t mean that people
should be able simply to pull their socks up and get better, or that it‘s
under conscious control. However, it is testament to the complexity of the
brain that the mind is capable of such stark physical symptoms. As a model
for understanding a condition, it‘s as valid as any other.
The implication in this article is that ME patients
object to a psychological explanation because they are threatened by some
stigma toward mental illness.
The WHO and the UK government officially classify ME
as a neurological illness.
Why would ME patients fear any stigma to a disease
classification unconnected to their own disease?
This is just misinformation and biased reporting and
does not serve the public interest. It misleads the public and no chance is
offered by the editor to redress this imbalance between fact and opinion.
Why do we feel it is so important that the PCC
investigate these complaints?
It is because those who suffer from ME have to
endure enormous pain and illness caused by the disease. They suffer enormous
hardship as do their families and carers. They do not need to be
denigrated even further by misinformation and shoddy journalism.
The disease is officially recognised by the WHO as a
neurological illness. The UK government accept this also. Yet the views
propagated by Professor Wessely and his colleagues have helped distort this
classification and affected perception of the illness by media, academia, researchers,
politicians and the public. By allowing these one-sided views to be repeated and
embellished by poor reporting the editors of these newspapers have
misled the public.
The lack of any real research in these articles is
staggering bearing in mind the effect these articles will have on sick and
vulnerable patients who have been left with little proper healthcare due to the policies of
and beliefs of people like Professor Wessely, which have been the only views
published in this coordinated series of articles.
We would ask for similar coverage to be given to the
patients‘ stories.
We would also like to ask the PCC to investigate the
possible collusion by the editors of these newspapers in producing essentially
the same propaganda by promoting the views of mainly one person in such a
short space of time.
The Editors‘ Code of Practice states -
Accuracy
iii) The Press must take care not to publish
inaccurate, misleading or distorted information,
We believe the editorial procedures in these
newspapers have not been rigorous enough. The views of Professor Wessely with regard
to ME are, we feel, extremist and largely inaccurate and the public will
have been given a completely distorted view of this disease by reading
these articles.
ii) The Press, whilst free to be partisan, must
distinguish clearly between comment, conjecture and fact.
The editors and journalists participating in the
production of these articles have not been careful enough to distinguish between fact
and conjecture. In fact some of the journalists have contributed to this
lack of distinction.
All of the articles allow sycophantic homages to
Professor Wessely and his views, whilst painting Professor Wessely as a victim
and denigrating ME patients as extremists. Yet they avoid mentioning the damage
being done by psychiatrists who enforce their doctrine and
theories on sick and vulnerable patients suffering from an organic illness which is
officially recognised by the WHO and the UK government as a neurological illness
[8].
The repetition of the alleged death threats to
Professor Wessely has had no research to corroborate the fact that multiple
researchers have received death threats – as has been stated in The Telegraph. We
only have Professor Wessely‘s allegation.
The Editors‘ Code of Practice states -
Opportunity to Reply
A fair opportunity for reply to inaccuracies must be
given when reasonably called for.
These newspapers have not allowed any fair
opportunity for replies or requested any opportunity to reply. They have not provided a
similar amount of space for anyone to refute Professor Wessely‘s claims or those
comments of the journalists.
The Times ignored the letter by the European ME
Alliance which disproved some of Professor Wessely‘s remarks.
The Editors‘ Code of Practice states -
Harassment
i) Journalists must not engage in intimidation,
harassment or persistent pursuit.
One could argue that these seemingly coordinated
efforts to provide biased articles in support of one person‘s viewpoint, are
harassing and intimidating to ME patients.
These articles have caused great distress for many
sick and vulnerable patients who do not have the means or the health to reply. As
such the patients are cheap targets for these editors who have allowed
poorly researched, biased and superficial articles to be published instead of
factual content.
The Editors‘ Code of Practice states -
Discrimination
i) The press must avoid prejudicial or pejorative
reference to an individual's race, colour, religion, gender, sexual
orientation or to any
physical or mental illness or disability
The tone of the articles is completely biased and
denigrates ME patients and trivialises the disease itself as not of organic
origin – remember the WHO and UK government classification and position on this.
The Editors‘ Code of Practice states -
Discrimination
3. Whenever the public interest is invoked, the PCC
will require editors to demonstrate fully that they reasonably believed that
publication, or journalistic activity undertaken with a view to
publication, would be in the public interest.
Your Code of Conduct states that the Public interest
includes
ii) Protecting public health and safety.
iii) Preventing the public from being misled by an
action or statement of an individual or organisation.
It can only be in the public interest to publish
stories eulogising Professor Wessely if the victims at the receiving end of his
particular doctrine are allowed a similar opportunity to present their views.
In our opinion these articles, by their content and
their contiguity, being published consecutively in one newspaper after
another during a relatively short period of time, are misleading the public due to
their extremely poor research, lack of scientific rigour and due to the total
absence of any reasonable editorial process. There seems to be no editorial discipline
at all invoked.
The articles are conspicuous mainly because they all
provide Professor Wessely with a platform to publicise his views on ME whilst
at the same time repeating Professor Wessely‘s alleged death threats against
him from ME patients – without providing any proof of the veracity of these
allegations.
That these articles all seem to follow on one from
another in different newspapers during a very short period of time would
indicate to us a level of collusion and a coordinated attempt by the editors
of these newspapers to distort the facts around this disease.
ME is a serious, disabling and chronic organic (i.e.
physical not mental) disorder.
ME has been classified by the World Health
Organisation (ICD 10 G 93.3) as a neurological illness affecting up to 250,000
individuals within the UK. It is also accepted by the UK government as a neurological
illness of severe disability.
ME patients have been banned from donating blood for
life and are not allowed to donate live or deceased tissue, bone marrow or
cord blood unless the condition has resolved according to the UK donor
selection guidelines.
Yet all of the articles repeat, or allow to be
repeated, the same inaccuracies embedded in Professor Wessely‘s opinion that ME is a
somatoform illness.
This clearly goes against the WHO classification,
the UK government policy, the Blood Transfusion Service and Tissue Transplantaion
Services and an enormous body of evidence from biomedical research.
There is little impartiality in these stories.
The editors of these newspapers have not allowed an
opportunity to be provided for any ME organisation or people with ME, or even
the so called ‗militant activists‘ (who remain unidentified), to respond
with a similar article. They routinely ignore letters in reply and are not
serving the public interest with the distortions in their biased articles.
We contend that these newspapers have misled the
public.
As none of these editors have allowed patients or
patient groups to respond with similar media space then we provide an example here
by repeating the words of one ME patient.
In a presentation by Catriona Courtier at the Royal
Society of Medicine meeting in the ―Medicine and ME series on 11th July 2009
she emphasised the scandalous situation faced by ME patients in the UK:
“Over the twenty years I have had this illness, what
has really bedevilled the situation of patients with ME has
been the belief, which has been persistently promulgated, that we are
suffering, not from a physical illness but from an illness belief. This is
at the root of all the problems we experience: the lack of resources, the
hostility and disbelief from some doctors, the ignorance and
disinterest in our symptoms, the ineffective treatments, the harmful
treatments and in the very worst cases, the imposition of psychiatric
treatment against the patient's wishes.
“Those who promulgate the view that ME is an illness
belief have undermined the mutual trust and respect that should
exist between doctor and patient. They have done a great
disservice to both patients and to the medical profession.
“I began by describing the severely affected as the
weakest among us.
In some ways they are the strongest… to live for
many years with an illness like ME is a huge feat of human endurance
and courage but is seldom recognised as such. People with ME at all
levels deserve to be respected. They deserve to be listened to”.
We would also like to repeat the words of Dr Harvey
Alter – (chief of the infectious disease section and associate director
for research of the Department of Transfusion Medicine, Warren Grant Magnuson
Clinical Center at the National Institutes of Health in Bethesda, Maryland).
"I'm absolutely convinced that when you define this
disease by proper criteria, this is a very serious and significant
medical disease, and not a psychological disease. It has the characteristics of
a viral disease. It usually starts with a viral-like illness. If XMRV is
not the causative agent - - and it may well not be -- there is still need by
other groups to look for the next agent which may be the case." [8]
We hope that the Press Complaints Commission will
investigate this breach of ethics and procedures by investigating this spate of
coordinated attacks and propaganda against ME patients and their families.
The Editors‘ Code of Practice states that ―All
members of the press have a duty to maintain the highest professional standards .
We believe that these articles have instead lowered
the professional standards to an unacceptable degree and the editors have
therefore failed in their duty.
Thank you for allowing us to provide this
information and for considering our complaints,
Yours Sincerely,
The Trustees and Supporters of Invest in ME
References:
1]
What is ME? What is CFS? INFORMATION FOR CLINICIANS
AND LAWYERS by E.P. Marshall, M. Williams, M. Hooper -
