Ask anyone who has stood up to quacks/charlatans/nutbars-- Crazy people be CRAZY.
Someone tries to educate the public, move their field, shine a candle in a demon haunted world, stand up for what they think is right, and they are rewarded with insane emails (check!), often including threats of physical violence (check!), badgering emails to ones employers (check, like, times eleventy!), which inevitably escalate into legal bullying (stifling free-speech by issuing false DMCAs, filing lawsuits with the intent of bankrupting the opposition, exploiting bullshit libel laws in backwards countries), ruining priceless research (animal lib freaks, anti-GMO freaks), criminally actionable stalking of friends and family members, actual physically harm, the list goes on.
Begs the question: Why do it? Just stop talking about vaccines, just stop talking about XMRV, stop criticizing some idiot anti-science internet celebrity, dont 'provoke' them, and the crazy people will leave you alone. Right?
Which in turn begs the question: Why not? If you are doing something you believe in, why negotiate with terrorists? They have their 'weapons', and we have legal recourse. We have rights. And no one can scare us away from using them.
While us bloggers try to support one another as best we can, it is nice when 'outsiders' step up to support the people who might not necessarily have our kind of support network, whether its the PLOS organization supporting scientists and science journalists, or now, the Nature organization partnered with Sense About Science.
The first recipients are Shi-min Fang, a biochemist-turned-journalist who was physically attacked for uncovering fraud in the Chinese science/medical system, and Simon Wessely, who has had to deal with, well, if you know what I had to deal with covering the XMRV fiasco, take that, times a gazillion, times a couple decades...
We do what we do because it needs to be done, but its nice when someone else says "Thank you. This needs to be done", or as this fellow put it "If scientists are silent, loony ideas will win".
Simon Wessely's work on ME/CFS is basically equivalent to Bruno Bettelheim's work on autism and in the (hopefully very near) future will be shown to be as such. Wessely's inane and convoluted theories are just as repugnant and stupid as Bettelheim's and his oversized influence has caused enormous amounts of harm to countless numbers of people, both patients and their families, just like Bettelheim. Therefore Wessely's work deserves every single bit of criticism that it gets and much much more.*
One big mistake that patients (including myself) have made and continue to make is to target Wessely himself instead of focusing their criticisms on his work. The only difference between Wessely and Bettelheim is that Bettelheim was open about his views while Wessely has elevated weasel-wording to a disgusting art form, which can make it hard for people who are not familiar with his and his colleagues' work to decipher what his views on the disease really are (hint: Wessely doesn't believe ME/CFS to be a disease at all but rather to be the result of simple deconditioning and 'dysfunctional illness beliefs', ie the patient's belief that they suffer from any sort of disease to begin with). Bettelheim received awards during his lifetime as well, but it doesn't mean that his theories weren't and aren't complete shit. Accordingly, I do not view any awards given to Wessely to be a credit to him but rather as a stain on the reputation of the organization which gave him the award.
*Note: Threats of physical harm do not qualify as 'criticism' and should not be tolerated.
Sidenote/thread derail- WTF is up with Sense About Science? It's like part of an Orwellian cult or something! UK you so crazy! :P (Note: the shit below is really worth reading, it's fucking crazy)
Invasion of the Entryists-
Beware The Ambassadors of Science -
So much for 'Sense' About Science-
ERV/Abbie, you are wrong on Simon – this is not something to celebrate. Simon's approach has been for decades: "Fatigue? Don't investigate, these people have false believes." It can be said quite clearly that Simon is wrong: With Kathleen and Alan Light's work demonstrating physical pathologies through differential gene expression after an exercise challenge, and Christopher Snell doing something similar with VO2max after an exercise challenge (both not explainable with sedentary behavior or deconditioning), the good Simon wants to tell people who have demonstrable physical problems that they only believe themselves ill/sick.* It is "The Secret", by the good Simon.
And a prize for that is good? I beg to differ.
Oh, not to mention that if you look for reasons why people are fatigued (which the good Simon refuses to do), you will find (depending on cohort) in about somewhere between 20% and 60% of cases some other disease/illness ** – I think this is called "doing a differential". But what do I know, I am not a prize-worthy doctor like the good Simon is, I am only an angry Schmug, who only believes his is ill.
* And you can see why people will get angry with the good Simon, and write him angry mails?
** e.g. Newton et al. 2010
"The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same"
Oh, I have a good idea! I should nominate an HIV-denier for the next John Maddox prize, someone who has the courage to go up against those crazy AIDS patients. Someone like Casper Schmidt, if he weren't dead: http://parakoch.blogspot.de/2012/02/oh-irony-2.html
Or maybe someone like Lori A. J. Scott-Sheldon, Seth C. Kalichman, Michael P. Carey and Robyn L. Fielder for their persistence in trying to find a behavioral cure for HIV? http://parakoch.blogspot.de/2012/10/hiv-unimpressed-by-stress-managemen…
Or maybe one of those homeophatic jokers who try to cure HIV?
I'm sure you'll find plenty of examples of courageous people working on the HIV/AIDS problem for the next John Maddox prize.
(If you find sarcasm in this this post, feel free to keep it.)
And they're off...
Oh, a quote for about the ethical behavior of the good Simon:
Wessely also fails to mention that in the 1996 Joint Royal Colleges’ Report on CFS his advice to Government bodies was that the reported biomedical abnormalities “should not deflect the clinician away from the biopsychosocial approach and should not focus attention towards a search for an ‘organic’ cause”, or his recommendation that no advanced tests should be carried out on these patients when it is those very tests that reveal the organic nature of the disorder (Joint Royal Colleges’ Report 1996: CR54).
[ME/CFS is] “perpetuated predominantly by dysfunctional illness beliefs and coping behaviours” and “[negative automatic thoughts] are explained as distortions of reality” (Manual of cognitive-behavioural treatment for CFS, Chalder T, Deale A, Sharpe M, Wessely S. 19/6/2002)
One more thing: Not only do I doubt that Wessely has contributed in any way to clearing up the XMRV fraud/scam from the Mikovits/Ruscetti/Lombardi/WPI frauds/quacks (so how does he qualify as a "quack hunter"?). But furthermore I think that Mikovits could capture a part of the CFS population only because psycho-quacks like Wessely (and his CDC counterparts on the other side of the pond) constantly denied any investigation in the pathology and etiology of fatigue.
So you say Wessely is a patron of science? Like the scientific method where if you have a hypothesis, you test it? Like if you suspect that the fatigue in patients is not "real" (e.g. not organic, but instead some fatigue/illness "believe), you can do all kinds of tests to check this. Like The Lights and Snell did with exercise challenges, like Wessely never did. In fact the PACE study – what Wessely deems the gold standard of "evidence" in CFS – went out of its way to include any objective markers of fatigability.
Yeah, give the man a prize for science and stuff! A true scientific hero of our time! Thank god we have such people like Wessely speaking up against other quacks.
ERV wrote: "and Simon Wessely, who has had to deal with, well, if you know what I had to deal with covering the XMRV fiasco, take that, times a gazillion, times a couple decades…"
A fundamental difference between the work of the author of this blog (including blogging about XMRV) and that of Professor Wessely is that all of the former's work is grounded in science - and that of the latter is not. That doesn't mean Wessely should under any circumstance be a target of harassment - but psychiatry is in many ways 'science challenged' and while society needs psychiatry, (flawed as it may be) because there is no alternative, we shouldn't get lost in a 'facility = validity fallacy. I've yet to see anyone specify what 'science' Wessely 'stood up for' - from the SAS press release it seemed to be this http://www.pacetrial.org/ which certainly contains a lot statistics but lacks anything that would meet a standard expected in biological science.
The award to Wessely (which looks like a pat on the back for 'one of ours') is unfortunate because it detracts from the very real value of the award to Shi-min Fang.
Way to taint this price by giving it to Wessely.
It is a travesty that Simon Wessely has won this award. I do not condone the death threats against him, but being treated wrongly does not qualify one for an award. Wessely has done nothing to advance the understanding of ME/CFS. Exercise may benefit some of the people under Wessely's care, but it is harmful to CFS patients.
Wessely was not an important person in disproving the XMRV hypothesis. That work was done by virologists, using samples from patients treated in the practices of leading CFS doctors here in the US, not in samples from Wessely's practice.
Despite the ongoing conversation, I want to thank you Abby for keeping up the fight for reality.
I wish I lived in a world where that comment didn't make sense to anybody.
I am not a sufferer from CFS but having worked with XMRV a bit I remember that Simon was on the very first paper that refuted the XMRV findings at a time when not many believed him - not many scientists and surely not the CFS community. He was right but many of the CFS community preferred to ignore the warnings, harrass the scientists of that paper and waste their money anyway. It is true that many good papers then followed from the US leading to the rebuttal of XMRV. However, the original nonsense publications (Mikovits, Alter) also came from there, causing this mess in the first place.
Simon Wessely can't tell the difference between CFS and depression. It was interesting that that paper found no XMRV, compared to (what was it?) 6% in the controls in the Science paper, sounding a warning to all who would listen. Wessely does not believe in testing CFS patients for physical abnormalities, so how can he diagnose CFS? That was all I was trying to say--he is not able to provide CFS patients for any research study.
Simon's paper is scientifically not exciting but sound, no matter what some disgruntled bloggers say. There is no XMRV in the human population, therefore there is also nothing in the "controls" to be found. But you can mistake murine contamination for signs of XMRV infection. This is what happened at the WPI and with Alter's paper. They were so excited about their "findings" that they made everyone mad without asking any critical questions. And the CFS community was only too willing (perhaps understandably) to believe them. This is why I think Simon's warnings were justified.
Problem is that Wessely, CFS extremists, and CFS skeptics like to provoke.
Recently, on BBC radio, Wessely said that CFS patients prefer suffering from a deadly retrovirus than a curable disorder. The problem is that CFS is neither of the two.
Additional problem is that Wessely was awarded by an organization (Sense about Science) he himself co-established and where he is even a member of the advisory board.
CFS-extremists reject CFS science. To these people CFS is a belief system characterized by quackery and they want CFS scientists to prove the misconceptions of quacks.
Additional problem is that they consider science as a major threat to their faith and are trying to frustrate the work of CFS scientists wherever possible.
CFS skeptics like to refer to the attitudes as well as to the behaviour of CFS extremists. In the process, they too reject CFS research.
Additional problem is that CFS science has never resulted in whatever discovery.
Wow, the first three comments on this post in no way completely demonstrate the whole point of this post.
Is this real irony or Alanis Morissette irony? I never remember which is which.
I'll never understand why people argue for differentially expressed genes via qPCR when they could just run arrays. It's at a point where it's less expensive than it has been. The dates of some of these papers from the Lights are 2009 and 2011. What gives? Run the experiments, post them to GEO, etc...
On second thought, maybe Simon Wessely deserves the John Maddox prize:
Maddox penned an editorial in April 1983 entitled "No Need for Panic about AIDS", stating that "male homosexuals should be persuaded to change their ways" of "pathetic promiscuity" and describing AIDS as a "perhaps non-existent condition"
Maddox, who very courageously spoke up that AIDS was non-existent ("perhaps", always leave a back door open!), giving his name for a prize who's first recipient, who very courageously speaks up (although very seldom in public and rather behind closed doors, one can't help to notice) that ME is non-existent as an bodily disease. How fitting, indeed.
And I remember vaguely that John Maddox had a, well, let's say not exactly honorable part in the Gallo/Montagnier saga – I need to reread John Crewdson's book, I guess.
Thank you Tony for pointing that out - more ironic than the so far quite rational queries in response to this post?
@ Mike - who exactly - the cRaZies?
@ WLU - see above.
Note - some people who oppose Wesseleys theories have attacked him personally - therefore all people who oppose him are crazy. Thats logic right?
Maybe he didnt believe in HIV in April of 1983. In April 1983, what we now view as HIV denial was a valid scientific hypothesis. What is important, is that as evidence rolled in, Maddox changed his mind, and in fact, became very outspoken and aggressive against HIV Deniers.
If you want to 'GOTCHA!' a scientist for being wrong, you wont have a hard time of it. Scientists are always wrong. The question is more of whether they changed their mind when it came to their attention that they were wrong.
No David, this is not logic, this is nonsense. Scientists judge on the basis of evidence and not pejudice. I hope you will do that, too.
@OWE - exactly -
I was pointing out the fact that just because some idiots attacked this guy over the XMRV thing - does not lead to the prejudice that everyone else that disagrees with him - over his other work - on the basis of the evidence - is a nutjob.
There are many sane, rational, professional scientists who are at profound odds with this ,mans work, yet via a crazy combination of events, including fraud and the misappropriation of funds from a patient group - the XMRV debacle has painted people with CFS with less sympathy than rocket firing Palestinians, and somehow put the whole debate into the box marked "Anti-Vax/GMO/Space-Waves anti science quackery".
Yet this is a serious and profoundly debilitating disease, of as yet unknown etiology - a serious medical issue - and does not deserve now to be eye rolled at along with brain damage by adjuvant , just because some fraudulent money grabbing idiots whipped up 'we have a cure' hysteria.
"What is important, is that as evidence rolled in…"
Yeah, and Simon Wessely is one of the persons responsible that the evidence is not rolling in the case of ME/CFS as much as would be possible.
And it is not like some evidence to contradict him profoundly isn't here already (as I mentioned). Yet people with ME/CFS are still slandered as CRAZY, who don't deserve research, who don't deserve proper treatment.
And you Abbie participate in this slandering and even elevate it into the area of admirable science – you are are like John Maddox in 1983. (And if I may note, you seem to enjoy this. I think the correct term is trolling).
And even if it was shown that a significant proportion of people with ME/CFS were CRAZY (which hasn't been demonstrated), or faking (which hasn't been demonstrated) or imagining an non-existent bodily disease (which hasn't been demonstrated), even then it would be dishonest what you do Abbie.
If you don't give a fuck about the suffering of people with ME/CFS (which is in no small part a result of the Wessely school), if you don't care about what science has (or has not) been doing for ME/CS, then stick to retrovirology (which you seem to understand a lot more). Because we already have enough stupid scientists in the area of ME/CFS and don't need your impressive expertise in ME/CFS.
(And this was not a "gotcha" moment regarding John Maddox if you care to read up about his life. But yeah, keep deluding yourself that science is correcting itself in time, and that it has corrected itself in all fields, including ME/CFS.)
And as to regards of the availability of evidence: John Maddox seemed to have enough evidence to blame the homosexuals for their wicked ways, and do so in his scientific publication Nature.
Or is it simply the scientific Null-Hypothesis, that if there is no evidence, it is the right thing to blame the patient?
As a side-note: It seems to me that the "science is self-correcting" image is always then invoked, when there are short-comings in the current state of scientific affairs, mainly to quell criticism. Either to say "everything is going to be OK, don't worry" or to say "but science is already correct, because it is self-correcting!". You seem to imply the latter. So evidence that people were wrong (and awfully homophobic and anti-patient wrong as in the case of John Maddox) is being turned into evidence that science can't be wrong today?
The "science is self-correcting" meme is an appeal to the authority of scientists, not an discussion about scientific facts – so congrats, Abbie you are no better than those who believed in Judy Mikovits.
And BTW, while we are at the topic of self-correcting science: Why hasn't there been a proper inquiry into the behavior of Mikovits, Lombardi and Ruscetti? Why hasn't there been a proper explanation of how Ruscetti achieved his results? Where is the science you so admire? Where is the inquiry into how the results of the XMRV study were aquired? And I for one don't think that Ruscetti's XMRV results were the result of an singular and unprecedented accident. So has anybody taken a good critical look into his other work? And if no, why do you try to perpetuate that everything is OK because science is self-correcting? Where is it, your beloved self-correction of science, when people like Ruscetti can continue to "do science" without challenge?