Supporting the right to constructive debate

Last week the PLoS ONE editorial staff posted a blog in support of a PLoS ONE author who has reportedly received death threats after publishing a paper which adds to the growing body of evidence that refutes XMRV’s involvement in  XMRV as a potential cause of chronic fatigue syndrome. The blog is copied below.

Several members of the editorial staff at PLoS (including PLoS Medicine editors) were consulted before the PLoS ONE blog was posted, and we all supported the call for open and civilized debate into much needed research on this debilitating disease.

Perhaps it should not have been surprising in the often febrile debate that surrounds this research that the blog has in its turn attracted very many comments.  We wish to make it absolutely clear that we support the right of anyone to openly criticize research – one of the many benefits of open access to research is that results, hypotheses, ideas and so on are open to broader scrutiny. We also wish to state our categorical support for patients who participate constructively in the discussion about medical research.

PLoS ONE Blog

“Chronic fatigue syndrome (CFS) is a mysterious condition. Its cause, diagnosis, even its name have long been sources of controversy, and it appears that this controversy has recently reached new heights, with some individuals issuing a series of threats to a subset of researchers in the field, as reported in a recent article in the Observer.

This particular episode of the conflict involves a paper published in PLoS ONE in Jan. 2010, so we feel at this point it is appropriate for us to comment and express our disapproval of this behavior.

The PLoS ONE study was the first response to an Oct. 2009 article in the journal Science that reported a correlation between CFS and a virus called XMRV. Contrary to the original finding, the PLoS ONE paper reported no evidence of XMRV in CFS patients, and a number of similar studies followed on its heels (see examples here and here), prompting Science to issue an expression of concern.

These later reports generated a very negative response from some individuals at the time of publication – a number of comments on the PLoS ONE paper had to be removed from the website because of inappropriate content – and it appears that the situation has not improved. According to the Observer article, “the militants are now considered to be as dangerous and uncompromising as animal rights extremists.” The article goes on to describe various instances of physical and verbal abuses, including daily death threats addressed to the lead author of the PLoS ONE paper, Professor Myra McClure.

As the debate about CFS continues, we at PLoS would like to take the opportunity to express support for our authors and for their right, and of course everyone else’s right, to enjoy the freedom to debate and investigate scientific topics openly, constructively, and without fear. This situation has emphasized, to us, the importance of civilized discourse in these matters. Those who threaten researchers’ safety above all do themselves a major disservice by dissuading other researchers from entering the field, chasing away the very people who may be able to help them. It is bad both for science and for patients, and should absolutely not be tolerated.”

This entry was posted in General and tagged , , , . Bookmark the permalink.

3 Responses to Supporting the right to constructive debate

  1. Angela Kennedy says:

    Thank you PLoS ONE. Your comment:

    “We wish to make it absolutely clear that we support the right of anyone to openly criticize research – one of the many benefits of open access to research is that results, hypotheses, ideas and so on are open to broader scrutiny. We also wish to state our categorical support for patients who participate constructively in the discussion about medical research”

    This is a fair and courageous comment, and is most appreciated.

    VA:F [1.9.22_1171]
    Rating: 0 (from 0 votes)
  2. Anyone who has received a death threat or other harassment through email should GO TO THE POLICE. Period.

    Instead, those of us who DO try to participate in constructive criticism are tarred and feathered. Which results in leaving us out of the conversation entirely.

    Part of the problem is that several British psychiatrists use these methods to keep the spotlight focused on themselves instead of, for example, a new definition for ME that came out in the Journal of Internal Medicine this summer. That definition would put them out of business, so they would rather you be chasing the red herring of the “dangerous” patient.

    Myalgic Encephalomyelitis is a seriously disabling disease characterized by post-exertional relapse and significant cognitive dysfunction. Symptoms include severe muscle pain and weakness, headaches, photophobia, ataxia, dyslexia, disorientation, confusion, and expressive dysphasia. Roughly one-fourth of the victims remain housebound and/or bedridden for years – sometimes for their entire lives.

    It is portrayed by a group of British psychiatrists as a modern form of “neurasthenia,” for which they actually cite a book written in 1869 that claimed girls who studied science risked either having their uteruses shrivel up (hysteria) or a permanent “nervous condition” – neurasthenia.

    The prescription of CBT/GET (Cognitive Behaviour Therapy/Graded Exercise Therapy) preferred by British health authoritties, on the advice of these psychiatrists, is at best woefully inadequate, and at worst, makes the patients more disabled than when they started out.

    Every year, in May, the organization Invest in ME runs a research conference in London, bringing in researchers from around the globe. They have CD’s from each of those comferences, since 2006. For a truly free and intelligent debate, let me suggest the editor avail himself/herself of all this information, which is effectively censored in the UK.

    In 1999, Harvard medical school professor Anthony Komaroff wrote in the American Journal of Medicine that there were so many good published articles in peer-reviewed research journals that the psychiatric portrayal of this disease could be put to rest. He repeated that same statement ten years later.

    Wouldn’t it be interesting to have Drl Komaroff summarize this research for your Journal, to show the side of the story that is being left out by the British psychiatrists? It would also encourage rational discourse, instead of focusing so much attention on a small group of miscreants who do not speak for the 250,000 British citizens with M.E. or the one million US adults with CFS (Fukuda 1994).

    Thank you.

    VA:F [1.9.22_1171]
    Rating: 0 (from 0 votes)
  3. Michelle Dent says:

    There is no instance in which death threats toward any scientist working in any field can be justified. I share your condemnation of anyone who makes death threats to any of your contributors.

    However, you should know that the ‘death threats’ alluded to not only in the Observer newspaper but many others date from 2003, and, despite numerous requests, the person alleging them has consistently failed to put forward any proof that they ever existed.

    It should also be noted that the story of these claims made the Science and Health columns in: The Observer, The Times, the Independent and The Guardian national newspapers in the UK, a popular blog in the Daily Telegraph, the BBC Radio 4 Today programme and magazines The Economist and The Spectator. To achieve such blanket coverage in such short order it is likely the product of a concerted campaign.

    Why would someone orchestrate a campaign against patients, most of them bedbound or housebound and certainly too ill to ‘punch a scientist’?

    Maybe because a landmark publication, that of Carruthers et al (http://www.ncbi.nlm.nih.gov/pubmed/21777306 ) The International Consensus Criteria for Myalgic Encephalomyelitis, was announced ahead of publication on 20 July, the same week the campaign about patients being ‘more dangerous than animal activists’ was launched.

    This consensus criteria for diagnosis, to be used both in science and medicine, is the product of 26 scientists, medics and academics from 13 countries who have between them 400 years’ experience of ME and have treated 50,000 ME patients. It presents a significant threat to the vested interests of several of those making claims against patients in the Observer and the other national media articles whose careers have been built on the notion that ME is a psychosocial phenomenon, rather than a medical condition.

    Their campaign succeeded in stealing the headlines in the Science and Health columns which ought rightfully have announced Carruthers et al, 2011.

    VA:F [1.9.22_1171]
    Rating: 0 (from 0 votes)