Thanks for the encouragement and it would be cool if the fat lady sang, eh? Somehow, I suspect the submission by the Church of False Illness Beliefs would have been a rollicking one... ah well - we've got the nerdy version. Uno, I'll PM you - would be great if Malcolm Hooper et al could be apprised of this submission.
Must admit, it's GREAT that Drs Coffin and F. Ruscetti have spoken out @ the Prague conference. Their comments very nicely complement the BMJ/Press Complaints Commission submission.
UK Press Complaints Commission acknowledges different cohorts but denies Code breach
Formal Response from UK Press Complaints Commission
I thought you might be interested in the formal response on my BMJ complaint, from the UK Press Complaints Commission. As you can see below, "their decision was that there was no breach of the Code, and a full explanation is enclosed" (below).
Naturally I'm disappointed, particularly since an influential global journal such as the BMJ has in my eyes actively participated at the highest levels in publishing misleading and inaccurate information on ME/CFS and XMRV. That said, I'm not entirely surprised - the BMJ has been publishing information from unscientific cohorts of ME/CFS patients - or rather should I say Oxford criteria, largely depressed patients - for years. And they've been passing this off as scientifically "legit", by using misleading and entirely meaningless phrases such as "well-characterized"; and "well-defined".
As you know, this situation is additionally interesting, as the Centres for Disease Control in the US published this week a paper from Germany that confirmed the finding of XMRV in controls (http://www.cdc.gov/eid/content/16/6/pdfs/10-0066.pdf ). In other words, the BMJ may yet have the quality and negative influence of their work brought to task. And perhaps the horse isn't entirely out of the barn, as I have yet to hear a formal response to my complaint from the BMJ. Unanticipated results
Interestingly also, there are unanticipated results of this complaint. One is that the UK Press Complaints Commission clearly confirms that the BMJ and Science were studying apples and oranges:
"The Commission was satisfied that readers would recognise from the article that there were differences between the two cohorts."
And another is the confirmation that Myra McClure's article presented an allegation - rather than a statement of fact - that the Science study was investigating an outbreak of ME/CFS:
"It was satisfied that this information had not been presented as a statement of fact, but rather as an allegation"
Tell that to the media around the world, who reported McClure's allegations as fact.
Undeniable Ripple Effect of the BMJ's negative XMRV work
My biggest disappointment is that journals such as the BMJ - by virtue of their tremendous influence in the medical world - can yield negative influence when they publish careless information such as the series of articles/letters I complained about. Whether the Commission disagrees that the Public Interest was affected is moot. The fact remains that the WPI has not received government funding yet for a public health catastrophe that may turn out to be bigger than AIDS. Research using fuzzy cohorts has been published and openly supported by the BMJ - to the detriment of scientific medical progress for our ME/CFS patients. And thanks to the fuzzy research espoused by the BMJ, our patient community is still without meaningful biomedical diagnostics and intervention. Further, the internet has been buzzing with scientists convinced by the BMJ that the Science work was seriously flawed - rather than their own work. Just do a Google of "three negative XMRV studies", and set aside a week or so to read the links that come up. Or log on to one of the many UK media reports which word-for-word regurgitated dreck on the "three negative XMRV studies".
Actual complaint available by email
Please feel free to repost any or all of these and prior materials. The actual complaint sent in was 29 pages, with detailed cross-references to the Editor's Code of Practice, and the clauses under the Public Interest. If you'd like a copy, just PM me with an email address where I can send it to. It comprises a series of 3 or 4 emails, with attachments, and your firewall needs to be able to accept about 3 megs.
Formal response from BMJ still awaited
As the XMRV research continues to play out, it will be interesting to see whether the BMJ will ultimately rue not withdrawing their XMRV articles/letters. Because what is in the air still, is whether the BMJ will respond separately to me as well, since I not only lodged a formal complaint with the PCC, but also with the BMJ. It's a law of diminishing returns for the BMJ: the more positive research that comes out (eg. why would the NIH be sponsoring a conference on the pathogenicity of XMRV?); the sillier the BMJ will look.
A signpost for posterity?
Bottom line, nothing ventured, nothing gained. And this rejected complaint by the UK Press Complaints Commission may serve as an excellent signpost for posterity - once our community is medically vindicated. And like the Prague retrovirologists, I believe that is just a matter of time.
Below is the actual letter from the UK Press Complaints Commission (UK PCC).
I'm reminded of falsely accused prisoners that mark their jail walls with notch marks, and hieroglyphics about the injustices committed against them. It's important to document this history - warts and all.
Finally, I'm not holding my breath for an enlightened response from the BMJ, but one can always hope.
Further to our recent correspondence the Commission has now made its assessment of your complaint under the Code of Practice.
The Commission members have asked me to thank you for giving them the opportunity to consider the points you raise. However, their decision was that there was no breach of the Code and a full explanation is enclosed. Please let me know if you would like further clarification of the reasons for the Commission’s decision.
Although the Commissioners have come to this view, they have asked me to send a copy of your letter to the editor so that he is aware of your concerns.
If you are dissatisfied with the way in which your complaint has been handled - as opposed to the Commission’s decision itself - you should write within one month to the independent Charter Commissioner, whose details can be found in our How to Complain leaflet or at http://www.pcc.org.uk/complaints/process.html
Thank you for taking this matter up with us.
Commission’s decision in the case of
A person v British Medical Journal
The complainant expressed concern that the research paper was misleading in its comparison with the results of Lombardi’s research. The complainant were also concerned that three further articles published by the journal and a podcast available on its website in relation to the article were inaccurate.
Firstly, the Commission made clear that it was not generally for the PCC to validate medical research. It considered that the comparison of medical research is, to some extent, conjectural. It was the Commission’s place to consider whether the article had been presented in such a way that readers would not be misled. In this instance, the Commission noted that the article had clearly explained the origin of the samples used during the study, making clear that cells from 32 patients were used which had been taken in December 1991 and April 1992. It also referred to sources in which the cohort had been described in detail. The article went on to state that the patients had met the “Oxford” criteria for chronic fatigue syndrome, while the patients studied by Lombardi fulfilled the “Centers for Disease Control” criteria. It suggested that this may be the reason for the differing results. The Commission was satisfied that readers would recognise from the article that there were differences between the two cohorts. It considered that the paper was clear as to the purpose, method and results of the study. Although the complainant may not have agreed with elements of the study, the Commission was satisfied that it had been clearly presented and readers would generally not be misled by the article.
The Commission emphasised that journals are entitled to present the views of individuals, provided that they are clearly distinguished from fact. In this instance, the Commission was satisfied that the articles written by Fiona Godlee and Cathie Sudlow were clearly presented as the expression of their personal opinions on the subject. Given that the articles were clearly attributed to the individuals who wrote them, the Commission considered that readers would recognise that the views expressed in them about both the research and the subject of chronic fatigue syndrome in general represented the opinions of Ms Godlee and Ms Sudlow. Similarly, the podcast was clearly presented as expressing Duncan Jarvies’ own views on the connection between XMRV and CFS. With these points in mind, the Commission was satisfied that the two articles and podcasts were clearly presented as comment rather than statements of fact, and, as such, they were not in breach of the Clause 1 (Accuracy) of the Code.
The complainant had expressed concern that both Myra McClure’s article and the main article included an inaccurate claim that the patients studied by Lombardi came from an outbreak of chronic fatigue syndrome at Incline village in the mid-1980s. The Commission noted that both the articles made clear that this information “had been reported at a conference”. It was satisfied that this information had not been presented as a statement of fact, but rather as an allegation. Furthermore, the Commission had not received a complaint form Lombardi or his colleagues that the research had been misrepresented. There was no breach of the Code on this point.
Finally, in regard to the complainant’s concern that the article engaged the public interest element of the Code, the Commission made clear that this was designed to enable newspapers to make exceptions to the Code of Practice in cases of demonstrable public interest. It did not consider that these articles engaged this aspect of the Code.
Reference No. 101730
Elizabeth Cobbe Complaints Officer
Press Complaints Commission Halton House 20/23 Holborn London EC1N 2JD
Parvo, I think you did a brave thing. You have challenged the system, your own sense of fair play, and your own debilitating illness. I do not have your chutzpah, nor the clarity of thought to achieve what you have. Well done!
Now if there were one thing that would be cool to follow up on, it would be to interview some of those influential media who regurgitated the BMJ findings uncritically, and verbatum. Specifically, I'd LOVE to see their reaction to what rebecca highlighted:
If anyone can take the ball on this, that would be great! I wonder if doubleDmedocs might be interested in interviewing one of those media personalities?....
What with Dr Klimas' great performance this month, specifically with the prediction that they are proceeding with ALL 4 testing methods that Science used; and that we might have clinical (antiretroviral treatment) trials within 5-6 months, I'm pumped.