IIMEC6 - BMJ Comments on Conference
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.
"In late May I went with an open mind to the sixth Invest in ME conference in London to listen to research presentations and take part, on behalf of the BMJ in a concluding panel discussion.”
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
Although I was aware of Invest in ME’s stance against the recent PACE trial and other research on non-biological approaches, I was heartened by the conference theme: “The Way Forward for ME—A Case for Clinical Trials.” I knew that laboratory science had not yet yielded biological evidence that would lead to large scale clinical trials, so I hoped to hear about trials of health services and supportive interventions to improve patients’ experiences and lives. I heard about just one clinical trial at the conference,”
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
“Most of the other speakers reported, in highly technical language and with densely packed slides, exploratory studies on associations between CFS/ME and numerous biomarkers. Nobody discussed how this disparate collection of small scale laboratory studies might fit together with each other or the wider evidence base. By the end of the day the case for clinical trials had not been made.”
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?
“When I defended the PACE trial’s design and findings—albeit for a clearly defined, large subgroup of patients—and disclosed that I had a background in psychiatry, several people in the audience started shouting aggressively. It ended more constructively, with my offer accepted (I think) to speak at next year’s conference about the kind of research questions and study designs that might attract national research grants and be publishable in mainstream medical journals.”
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 those 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
“….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 articles.
Good doctors and researchers listen
to the patients and learn from them. Patients do not complain if
they are treated with respect.
“ How much of this awful behaviour is at least partly fuelled by angry responses from a wider group of campaigners to any suggestion that the condition might be helped, at least in some patients, by interventions such as cognitive behavioural therapy?
How much by campaigners’ insistence that the definition of CFS/ME must include a criterion that exercise causes a dangerous deterioration in symptoms and hence cannot be treated with even gradually increasing activity and exercise? And how much by doctors’ dislike of patients who won’t at least try something that research has shown to be effective and safe in well conducted trials? ”
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.
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
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 Fiona 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 ” 
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 they 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” that 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 apparent.
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.
“ all progress is being stifled by increasingly aggressive intimidation of researchers ”
This is gross hyperbole and far from the truthj. A more likely area for analysis of why progress is stifled could be seen here made here .
Dr Godlee continues –
“ Online abuse, personal threats, harassment, and referrals to the GMC have made the field a no go area for many. Leading CFS researcher Simon Wessely has moved on to investigating the problems of war veterans. “I now go to Iraq and Afghanistan, where I feel safer,” he says. A small minority of extremists has hijacked this important debate. ”
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 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.
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 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.
For years the type of research and approach exhibited by the PACE trial, and it’s equally poor 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 accountable for the
damage she and her organisation do to a vulnerable and
ill patient population.
“ the quiet majority of patients must make sure that their reasonable voices are heard ”
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
this topic in the plenary session said simply - ’let the audience speak’.
Nigel Hawkes' article “Dangers of research into chronic fatigue syndrome  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.
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 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, 21st April 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 many 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.
Can 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
may have held back real research into ME and thus caused unnecessary
- Commentary: Heading for a therapeutic stalemate BMJ 2011;342:d3774
- Ending the stalemate over CFS/ME BMJ 2011;342:d3956
- Dangers of research into chronic fatigue syndrome BMJ 2011;342:d3780
- Norway rejection of CBT
- Belgium rejection of CBT
- Knowledge or Belief
- The Media and ME
- Dr Rosamund Vallings - IiME 2011 Conference Report
- Invest in ME 6th International ME Conference 2011 Addendum