AWARDS AND AN ANNIVERSARY
At the 19th HealthWatch annual general meeting there were even more winners than in previous years. This year’s special award for contributing to the public’s understanding of health issues went to Brian Deer, the medical journalist who exposed the MMR scandal (read his report below). It was also the tenth anniversary of the HealthWatch student prize for critical appraisal of clinical trial protocols.
A very special award was reserved for the HealthWatch founder member, many-times chairman and most prolific contributor to the HealthWatch Newsletter—John Garrow. In recognition of his long and valued service, the committee presented him with an over-sized steel spoon engraved with his initials and the message “evidence: one spoonful daily” (John reports again in this issue).
This year’s student competition, which invites entrants to rank and critique various trial protocols, attracted a record number of entries. First prize for 2011 went to 23-year-old Derek Ho (on the left), originally from Hong Kong, who is in his fifth year at London’s Imperial College Medical School, planning to specialise in ophthalmology or surgery. He entered the HealthWatch competition hoping just to practise his analytical skills during the summer holiday, so was delighted to discover that he had won first prize. “It was good to validate the critical appraisal skills that I learnt back in pre-clinical studies in Cambridge.” The runners up who were present were Jennifer Johnson (Warwick University, in the middle) and Mark Loughrey (Peninsula Medical School, on the right)
Derek has joined last year’s winner Kenneth Chan as fellow student member of the HealthWatch Committee.As in previous years, most student competition entries were from medical students. However this year, the nurse entries received were of an especially high standard, with an entry from Sara-Jane Bateman of Nottingham University School of Nursing being impressive enough to merit a special commendation.
Mandy Payne
Evidence-based midwife joins committee
This year’s AGM also welcomed a prominent advocate of evidence in women’s health onto the HealthWatch committee. Debra Bick is professor of evidence-based midwifery practice at the Florence Nightingale School of Nursing and Midwifery, London…
NEWS IN BRIEFHealthWatch committee member Les Rose is calling on readers of his “Majikthyse” blog to help persuade the US FDA to inspect the Burzynski Clinic in Texas, in the wake of the blogospheric storm that has blow up over a child with a rare brain tumour whose parents raised £200,000 so that she can receive the controversial treatments [1].
Bolton comedian Peter Kay extended his recent UK tour to include two sell-out charity concerts in Blackpool to help raise the money for four-year-old Billie Bainbridge of Exeter, who has a rare brain tumour known as Diffuse Intrinsic Pontine Glioma (DIPG). Her doctors had said the condition was incurable, so her desperate parents looked further afield. …Mandy Payne
Reference 1.http://majikthyse.wordpress.com/2011/11/30/ask-the-fda-to-inspect-burzynski-research-institute/
THREE HUNDRED doctors and scientists from across the globe have joined ranks to protest about universities teaching anti-science. Friends of Science in Medicine aims, “To reverse the current trend which sees government-funded tertiary institutions offering health care ‘science’ courses not based on scientific principles nor supported by scientific evidence”. The campaign began in Australia in December when Central Queensland University (CQU)’s Bachelor of Science (Chiropractic), which opens in March 2012, was denounced in an open letter from 35 experts to the university’s pro-vice-chancellor as “non-science” that could encourage the provision of dangerous treatments to children.
Get more info from scienceinmedicine@bigpond.com, or join by e-mailing your name, title and professional affiliations.
The Australian, 3 December 2011
http://www.theaustralian.com.au/news/health-science/medical-experts-condemn-chiropractic-degree-slated-for-queensland-uni/story-e6frg8y6-1226212734948A new free website allows patients to search for clinical trials of relevance to their own condition and to ask questions about them. The database includes all 40,000 trials which are NIH registered or NIHR supported and allows users to hear directly from clinicians and to contact the research teams.
http://www.yourtreatmentchoices.com
Channel 4’s recent series, “Food Hospital”, screened in December, tackled claims about food and diet. Sense About Science helped develop three clever little videos for the accompanying website, on understanding statistics, clinical trials and media reporting. Each lasts less than five minutes—short, snappy and easily understood by anyone without a science background.
http://foodhospital.channel4.com/the-truth-about/videos/
International support grows for French public health whistleblower, Alain Braillon. As a hepatologist in the 1980's, Braillon co-produced many papers that advanced knowledge of cardiovascular complications of cirrhosis. Now the journal Liver International has published an editorial calling upon the global medical/scientific community to “strive to support and protect those individuals amongst us who risk their careers, and in some cases even their lives, to beneficially change the world, either by direct actions or by drawing attention to wrongdoing.”
Liver International 2012;32(1):1
http://onlinelibrary.wiley.com/doi/10.1111/j.1478-3231.2011.02723.x/fullBoots Pharmacies have been told to stop listing medical conditions in their in-store advertising of homeopathic products, following a complaint by anti-pseudo-science blogger Simon Perry. The point-of-sale advertising in Boots stores recommended homeopathic products for use in a wide range of medical conditions including allergies, infections, insect bites, headaches and earaches. The Boots products are registered under the Medicines and Healthcare Products Regulatory Authority (MHRA) Simplified Scheme for homeopathic products. This does not require the manufacturer to provide any evidence that they actually work, unlike conventional medicines. However they are prohibited from indicating any medical conditions, and the MHRA have asked them to stop.
http://www.nightingale-collaboration.org/news
A new study supports claims that breast cancer screening in the UK may have caused more harm than good. Researchers at Southampton University found that harms—from false positives and overtreatment resulting from screening—largely offset the benefits up to 10 years, after which the benefits accumulate, but by much less than predicted when screening was first started. The authors call for better ways of identifying those most likely to benefit from surgery and for measuring the levels and duration of the harms from surgery.The meaning and implications of overdiagnosis and overtreatment need to be much better explained and communicated to any woman considering screening, they add.
BMJ, 8 December 2011
http://www.bmj.com/cgi/doi/10.1136/bmj.d7627
OUTGOING CHAIRMAN’S REPORT : SHARING IDEAS, SUPPORTING GOOD SCIENCE
With the advent of quality blogs such as David Colquhoun’s DC science, and with related organisations such as sense about science it can sometimes feel that the usefulness of HealthWatch is being eclipsed. However, we continue to be busy, and make an impact in all sorts of ways, and it seems that we are able to pool resources and collaborate very effectively.
I am of course grateful as ever to everyone who has contributed to HealthWatch over the last year directly or indirectly, and particularly to the work of the committee. Keith Isaacson, our new chairman, has been a friendly and supportive vice-chairman and I hope to return the favour as we exchange places. David Bender as secretary is really the person who runs the show and I am very grateful to him for his unfailing ability to know the correct answer to any question, as well as his organisation of the student prize. Anne Raikes has done a fabulous job at being a very patient, forbearing and above all scrupulously competent treasurer. I am indebted also to the remaining members of the committee, Susan Bewley, Walli Bounds, Diana Brahams, Malcolm Brahams, John Illman, Les Rose, our Membership secretary Ken Bodman, and student member Kenneth Chan for their contributions in attending committee meetings, being sources of wisdom and advice, and for contributing to the newsletter. Walli Bounds and Gillian Robinson have given considerable time to producing protocols and judging the student prize. We are all of course very grateful to Mandy Payne for her unfailing ability to pull a very high quality newsletter out of the hat, and to our barrister Caroline Addy who sees that we have not placed ourselves in legal difficulty.The website continues to be well used, and the googlegroup which all members can join, continues to be one of the main forums for alerting each other to current issues and sharing ideas.
If I may highlight a few of the things HealthWatch has been involved in over the last year:
Supporters of Peter Wilmshurst will already be aware that the libel case against him collapsed with the bankruptcy of NMT medical. Peter expressed his sadness that it came to this—that the many people who worked for the company lost their jobs, and that the company had been managed so badly. Peter has been able to recoup some but not all of his costs, but he has spent years of his life devoted to defending himself, which is a cost that cannot be counted so easily. HealthWatch has supported Peter in spirit throughout and has now given Peter the £12,000 collected in the whistleblowers’ support fund which is a small contribution to his costs overall.
Edzard Ernst has finally been told that he will have to leave the post of professor of complementary medicine in Exeter, though he is able to remain in post until a suitable successor has been found. Those of us familiar with Edzard’s capacity to speak the truth clearly, forthrightly and prolifically, are intrigued by Edzard’s view that as a result of leaving this post he will be able to speak his mind more freely in the future. Some proponents of complementary therapies have seemed to express some degree of pleasure that Edzard will no longer hold the chair, but I suspect their joy maybe short-sighted.
Les Rose has driven forward a pilot study into the Consumer Protection Scandal, and has established that the new structures for Trading Standards mean that we have had no success in our complaints about false health claims of various products. He is hoping to have his findings published, and there is no doubt that he will have highlighted a profound problem which needs further exposure.
The demise of the Prince’s Foundation for Integrated Health last year has coincided with the founding of a new “College of Medicine” whose senior figures include several previously associated with the Prince’s ill-fated Foundation. The new college reportedly aims to promote integrative and holistic medicine, which are ambiguous terms and one suspects that promotion of the use of complementary medicine is amongst its unwritten goals. The college has recruited some influential names behind its cause. HealthWatch published three very forthright letters in the BMJ [1,2,3] in response to a “LobbyWatch” article informing readers about the college [4]. Members of the college took note and wrote a response to our letters [5]. It is good to have our concerns published at this early stage in the development of the college as we will undoubtedly be able to refer back in the future and highlight problems that we saw at the outset.
Most recently we have also published in the BMJ a collaborative letter [6] led by Susan Bewley and Edzard Ernst criticizing the MHRA for trying to appoint to their Advisory Board proponents of homeopathy to assess whether or not homeopathic products are safe and effective. In the bruising round of rapid responses which followed homeopaths felt the need to gather the names of 40 or so prominent homeopaths from around the world to defend their position with what they considered to be the best evidence for homeopathy [7]. Edzard saw this as an opportunity not to be missed and helped us produce a further combined response taking this evidence to pieces [8].
These more significant actions are in addition to several smaller pieces of work along the way with individuals or groups of us writing letters to supposed academics promoting CAM or organizations selling therapies without any evidence to support them. We therefore will continue to work in any ways we can in pursuit of our aims, and continue to depend on the contributions of committee and members for which we are very grateful.
James May
GP Principal
Kennington, LondonReferences
All links above were accessed 8 December 2011.
Free registration or subscription required to view BMJ articles online.
INVESTIGATING ANDY: THE MMR SCANDAL
The title of my talk for the HealthWatch 2011 annual general meeting was, “Regrets? I have a few—Inside the MMR investigation”. Being honoured with an award seemed like a moment to go off-script, and after more than a year of banging back and forth to give lectures in the United States, and dashing around Britain to “Skeptics in the Pub” meetings, I’d gotten a little jaded with my standard “Fixing the Link” PowerPoints. So I took a chance and said something more personal.
My first regret was a failure, years ago, which had nothing to do with vaccines. In 1990, which Nick Ross reminded everyone at the meeting was the year that HealthWatch was launched, I was ensconced on Potrero Hill as The Sunday Times man in San Francisco (don’t ask how I pulled off that stunt). And on a sunny day, across the Bay at UC Berkeley, I interviewed Dr Peter Duesberg. This was (and still is) the man who said (and still says) that HIV is not the cause of Aids.
At the start of the 1990s, there were big gaps in science’s grasp of how the retrovirus could do its mischief. Duesberg, at the time a distinguished retrovirologist, was onto them like flies on sheep. His analysis was fascinating, and I took a pile of notes, while we chatted at a campus picnic table. But when I solicited his views on the “real” cause of the pandemic, he seemed unconvincing, even irrational. So, to my lifelong regret, I never wrote the piece. This is among my more painful hindsights. Agree with him or not—and that wasn’t really my business—what he said, back then, was worth a thousand words in The Sunday Times. “Boffin thinks you can’t catch Aids.”
But, as I say, I didn’t write it. Couldn’t be bothered, to be honest. Which left a modest gap to be filled by someone else. Newspapers, like nature, abhor a vacuum. And in the office from which I’d departed to write dispatches from America’s roadsides, was a medical correspondent under pressure. He’d been advised by our managers to leaven the usual diet of “new treatment offers hope” reports to “get stories like Deer’s” that cause a fuss.
Within months of my failure, he waded in to the HIV issue with a notorious crusade. It was full-bloodied denialism, but was allocated pages and pages by the then editor, Andrew Neil. And, bestowing on Duesberg the public credibility of a world class newspaper, it may well have fed into what was to occur in South Africa after 1999: president Thabo Mbeki’s denialist health strategy, which brought death and suffering on a horrifying scale.
If only I’d written a few well-picked words, conceivably things might have turned out differently. My colleague’s first pitch wouldn’t have survived the editor’s Tuesday conference. “Deer’s done that already,” Neil would have snapped.
Why is this relevant? Well, because journalists at the sharp end are bound to consider what plays out from their work. At the top, national editors are often supremely ideological, constantly thinking about the upshot of their coverage. But the most successful set this aside for the imperative to sell: to tell stories that people actually want to read. It’s an anarchic part of our culture, but is near the root of democracy. You tell stories, like climbing mountains, because they’re there.
My mistake with Duesberg was to evaluate his theories, as if I was the arbiter of his views. And when Andrew Wakefield came along as a topic of inquiry [1] I made sure not to make the same error. I was determined primarily to be a servant of the story, which, for all my hard work, told itself. “Excuse me, ma’am, did you see what happened?” Like a train crash, or a robbery. Get the facts.
Although I didn’t have time for all this in my talk, if I’d had the choice, I’d sooner have revealed proof that MMR indeed causes autism. I’d have got more space, won more journalism awards, have been accorded more spots on TV, and earnt more money, than I did revealing the Wakefield scandal. Overshadowing these, moreover, and worth more than them all together, I’d have accomplished something remarkable for children. If vaccines caused autism, that’s important information to head off another kind of pandemic.
The truth I found was a lesser story, although I think one of consequence. People have told me it’s a justification for a life. But here’s another regret: the (perhaps understandable) spin which my editors sometimes sought to introduce. They were always going on about measles outbreaks and whether MMR causes autism or not. I don’t belittle those questions—which I’ve researched a great deal—but they were never what drove my inquiries. I simply wanted to set out what it was that happened: in short, what Wakefield did.
Recently, I was invited to lunch by the legendary reporter Bruce Page, who led The Sunday Times campaign over Thalidomide. He made me wince with envy at how he said he completed the investigative part by pulling research on the drug from the library. And he reminded me of an old adage, passed to him by someone else, that there are really only two stories in our tradition. The first, he said, was, “We name the guilty men.” The other: “Arrow indicates defective part.”
Mine was the first kind (the second would have been the science): nailing an all-singing-and-dancing charlatan. For my HealthWatch talk, I showed a few of my slides about how my investigation moved forward over the years. I put up tables which compared what the BMJ has called Wakefield’s “elaborate fraud” with the Piltdown Man hoax of 1912. And I presented a series of slides concerning others in the saga, which cause me worry about the integrity of medical science.
These included the graduate student who knew something was amiss, but had nowhere to go with his concerns; co-authors taking credit from a high-impact publication; and a reviewer who was disposed to believe the MMR data because of an old-boy connection.Back to measles: of course I don’t minimise this disease, which is sometimes fatal and, more often, brain-damaging. Nor do I underestimate the importance of the science that lies behind vaccine safety. But alongside these issues, the Wakefield scandal says much about the potential for wrongdoing in research. It reveals the ease with which misconduct can be effected in academia, and the difficulty, or reluctance, to tackle it. Bill Clinton once called the 21st century the “century of biology”. And after what I’ve seen can happen, just looking at MMR, I fear another Thalidomide-style catastrophe.
HealthWatch, to its credit, often touches on such issues, but I must admit to a small regret about some emphases. As with the amazing Skeptics in the Pub [2] phenomenon, which has sprung up in the last few years, there seems to me to be a sporadic obsession with, say, rubbishing homeopaths, or brandishing the Daily Mail’s contradictions. By all means promote critical thinking, and call out absurdity, but, from my point of view, I’m not sure that it’s here that health requires watching most intently. As I said in my talk, I think that—for young people especially—trying “complementary” medicines can be a rite of passage. They may be a way in which some explore their route to rationality, rather than a gullibility from which we must rescue them. To borrow a related thought from the former politician Denis Healey: “If you’re not a communist before you’re 30, then you’ve got no heart. But if you’re still a communist after you’re 30, you’ve no brain.”
People often ask about the abuse I get, having had the temerity to take on Wakefield. Here’s an example I quoted from my hate mail inbox, which produced laughter enough to delight any speaker. It was written by a lady. She wrote in bold capitals which, to avoid shouting, I’ve dropped to lower case:“F... you. You are the scum of the earth. You are just trashing people that are totally dedicated to find cures for a horrible disease. Protecting your selfcentered ass, trashing others for selfgain, or protecting your buddies at a corrupted pharmaceutical industry. Well, now I’m trashing you right back. You are trash. We’re even.”
Upset, me? Nope. Understandable? Entirely. Wakefield has been encouraging people to be afraid of vaccines for 14 years. He was doing it at autism conferences long before I got involved. At one of these, I should point out, he gave his infamous “callous disregard” speech [3], about buying blood from children at a birthday party. In another speech, you won’t have heard, he betrayed an apparently sincere whistleblower [4] who voiced his vaccine safety concerns. If you watch the second video and listen to the audience, you’ll understand how Wakefield works the crowd.
And this brings me to the final regret which I raised at the meeting. It concerns people like the lady who wrote that email. That woman was suffering. She was clearly in pain—and a pain not inflicted by me. For years, some parents of children with developmental disorders have been led to believe that it was their own fault for not listening to Wakefield that a son or daughter is autistic or disabled. That can deepen a sense of guilt, from which springs a vulnerability which in some cases festers into hatred. But my regret isn’t vicarious. It’s not mere bystander sympathy. It’s that I sometimes find my compassion feels strained.
There was a day, for example, during Wakefield’s GMC hearing when a strange collection of people gathered outside. One was an overwrought woman bearing a placard with a picture of her young son who had undergone radical bowel surgery. But he wasn’t even involved in the Wakefield case and had been diagnosed at another hospital with a food intolerance. Wakefield’s disciples, however, pretended that this boy was part of the case. It was a disgusting deception, for which those who knew should be ashamed. But I wondered, most uncharitably, about that mother. Why did she allow herself to be used in this way? And what about those who used her?
I don’t fear the abuse of those victimised by Wakefield. But I sometimes feel my reactions are misplaced. It’s easy to dismiss these suffering people as cranks or idiots. It used to happen in the controversy around Duesberg. But it’s a greater accomplishment to stay focussed in compassion, and on the needs which should be brought to the fore. There’s no right response to hatred in hatred. I need to try harder next time.
Brian Deer
Journalist
London
In addition to receiving the 2011 HealthWatch award, Brian Deer was named specialist journalist of the year in the 2011 British Press Awards.Brian Deer can be contacted through his website, http://briandeer.com/
Further reading from Brian Deer’s website on topics mentioned:
- http://briandeer.com/mmr/lancet-summary.htm
- http://briandeer.com/skeptics-in-the-pub-1.htm
- http://briandeer.com/wakefield/birthday-blood.htm
- http://briandeer.com/solved/whistleblower-betrayed.htm
LETTER TO THE EDITOR: TESTING TREATMENTS: BETTER RESEARCH FOR BETTER HEALTHCARE
From Hazel Thornton, patient and independent lay advocate for quality in research and healthcareDear Editor,
HealthWatch Newsletter No. 82 included an article by Nick Ross reporting progress on a topic that has also occupied my mind for a couple of decades, namely, improving citizens` understanding about health research.The purpose of this letter is to request that you might publish a correction to the account given of the genesis of “Testing Treatments?” I do this as someone who was also present at that Oxford Meeting convened a decade ago by Sir Iain Chalmers to explore ways of improving public understanding of health research, as well as one of the authors of both the first edition of “Testing treatments: better research for better healthcare”, first published by the British Library in 2006, and of the second edition published in the meantime on 18th October 2011 by Pinter and Martin, viewed on:http://www.testingtreatments.org/new-edition/
I can do no better than repeat what is stated on the James Lind Library website giving “Information about Testing Treatments Two” http://www.jameslindlibrary.org/tt-2.html
“The story of Testing Treatments
Since Testing Treatments was published by the British Library in 2006 we have often been asked how we came to write our book. The tale began when Imogen Evans, a medical doctor, was commissioned by the British Library to write a book for the public on a topic of her choice. She chose a subject that had interested and vexed her for years in equal measure: how to ensure that research into medical treatments best meets the needs of patients. She was delighted when two colleagues—Iain Chalmers, a healthcare researcher, and Hazel Thornton, an independent lay advocate for quality in research—agreed to join her as co-authors.”I believe it to be important that not only readers of HealthWatch, but also all those people involved in the development of TTInteractive, be it in executive, management or advisory capacities, have a correct and proper understanding of the genesis and development of the book that forms the basis of this interactivity.
http://www.testingtreatments.org/testing-treatments-2/
Sincerely
Hazel Thornton
CHIROPRACTIC CURES FOR YOUR DNA?
The headline above should be good for a laugh, but believe it or not, there are chiropractors around the world who are claiming that they can help your body repair its DNA. All of them cite the same 2005 article as evidence, so I read the article to find out what it was all about.
The article is titled “Surrogate Indication of DNA Repair in Serum After Long Term Chiropractic Intervention—A Retrospective Study,” [1] written by Clayton Campbell, Christopher Kent, Arthur Banne, Amir Amiri, and Ronald W Pero. They published it in 2005 in a chiropractic journal called the Journal of Vertebral Subluxation Research. This journal has many of the trappings of a scientific journal, but it does not appear to be properly peer-reviewed, it is not indexed by standard biomedical databases, and (most problematic of all) it is based on a concept, “subluxation,” that does not exist. That’s right, even the UK’s General Chiropractic Council admitted in 2010 [2] that subluxation was a mirage…
Steven L Salzberg,
Professor of Medicine and Biostatistics
Johns Hopkins University School of Medicine
Baltimore, MD, USA
References
All links above were accessed on 8 December 2011. At time of access the website of the Journal of Vertebral Subluxation Research http://www.journalofsubluxationresearch.com/ was temporarily unavailable.
MEETING REPORT: A TROJAN HORSE INTO THE LION’S DEN
I was recently invited to speak at the College of Medicine Student Summer School on obesity. The invitation was very flattering and with some trepidation I accepted, on the grounds that some hard science and evaluation of evidence would be good for the students. David Colquhoun sent me a blistering email criticising me for lending scientific authority to the proceedings, but in addition to providing some science, I also acted as a Trojan horse, taking copies of the HealthWatch Newsletter with me.
I had planned just to leave these on a side table, but the organisers said that that table was needed for their sponsors—and they took my Newsletters to the registration desk, so that everyone was given a copy. …
David A Bender
Emeritus Professor of Nutritional Biochemistry
University College London
... AND A MEDICAL STUDENT’S EYE VIEWProfessor Bender would be pleased to learn that it was a good thing the HealthWatch Newsletters did not make it to the side table; it was filled with many herbal weight-loss remedies and various obesity-related books later on that day. …
Derek Ho
5th year medical student
Imperial College London
LAST WORD: PROTECTING PATIENTS; DISCIPLINING DOCTORS
In 40 years of clinical practice the nearest I got to being reported to the GMC was in an outpatient clinic in Northwick Park Hospital many years ago. The patient was a somewhat overweight lady who had brought with her a massive document recording everything she had eaten for the previous six weeks. She had no referring letter from her GP, but she explained to me that she did not need one because she was a private patient, not an NHS one. She had come to ask me why she had not lost any weight despite having maintained a diet supplying less than 800 calories per day.
I said I could not answer that question except by having her into my metabolic ward for 3 weeks on exactly the same diet, and measure her change in weight and metabolic rate. At this she became very angry. She said I was calling her a liar, because I obviously thought the record of her intake was just lies. She would not tolerate this insulting behaviour, and she went out.Ten minutes later the phone rang. She was with the Dean, insisting that I was unfit to practice, and should be struck off the Register, but the Dean did not agree. …
John Garrow
Emeritus Professor of Human Nutrition
University of London