• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

PLOS One: Supporting the right to constructive criticism

oceanblue

Guest
Messages
1,383
Location
UK
Apologies if this has been posted elsewhere, but I think this comment is very relevant to our particular forum:

Supporting the right to constructive debate
Posted on September 12th, 2011 by plos medicine

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 XMRVs 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.

That's very good news, and I think much needed clarification. As they say, the whole idea of open access to research is that it opens it up wider scrutiny, scrutiny that often seems to be lacking within the established CFS research community.

Wouldn't it be nice to see Richard Horton endorse the sentiments expressed by PLoS One today?

original 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 elses 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.
Thanks to mecfsforums for the original post.
 

Sean

Senior Member
Messages
7,378
My position is much the same as Sickofcfs.

Threats of violence (and of course any actual violence) are totally unacceptable and should be rejected and condemned by all patients, and any (genuine) threats should be properly prosecuted.

On the other hand, I have yet to see any real evidence that these threats against Wessely et al have actually occurred at any serious level. So I strongly suspect that the claims made by Wessely et al about these (alleged) threats are little more than self-serving hyperbolic propaganda, and particularly nasty propaganda at that.

I am very suspicious in particular about the timing and apparently co-ordinated nature of the claims, and believe it is a quite deliberate campaign to distract from the truly shitty (and, frankly, fraudulent) PACE results, and the general failure of that massively over-hyped CBT/GET behavioural model, upon which so many reputations and careers have been built and egos indulged.

Ironically, the only threat that I know of against any researcher that has actually been substantiated (in a court case) is against Ellen Goudsmit, who is also a patient, and who has done more for our cause than almost anybody.