I have to give a huge round of applause to PLoS, specifically, PLoS ONE, and their handling of the XMRV fiasco.
Some of you might remember, early 2010 PLoS published the very first 'Umm... XMRV isnt there...' paper, Failure to Detect the Novel Retrovirus XMRV in Chronic Fatigue Syndrome.
To a scientist, it was interesting, but not that big of a deal. People publish conflicting findings all the time. Eventually we get to the bottom of it. Whatever. Its annoying when you are in it, but its kinda funny to outside observing scientists.
The reaction from the initial studys principle investigator, however, was *shocking*-- Judy Mikovits ran to the media accusing everyone on the negative paper of fraud, accepting bribes, conspiracy, anything she could think of to discredit their work. You do not do this in science until you have evidence in hand. There are innumerable examples from very real instances of scientific misconduct where no action was taken until the case against the investigator was iron clad. Because science exists on a foundation of trust-- that everyone honestly recording and presenting their data-- accusing someone of breaching that trust is functionally ostracizing them from the scientific community (interfering with their ability to get/hold a job), marking them as a felon (at least in the US), and putting everything they have ever published into question (going back decades, in some instances). I cannot emphasize enough how inappropriate those statements were, and how shockingly offensive they were to me, even though I was not the target. (NOTE: almost two years later, and no evidence has surfaced to support the claims made by Mikovits).
Self proclaimed CFS patients were quick to follow suit, posting comments on the PLoS paper that were so over the top and over the line, the editors had to remove them-- something that is basically unheard of in the online publishing world.
Nor were these actions the result of 'bad apples'-- scientists are nuts, and sometimes we say nutty things. Random anons on the internet are nuts, and sometimes they do nutty things. No, all of this behavior was encouraged by the head of the Whittemore Peterson Institute, Anette Whittemore, who also took a turn harassing the negative papers principle investigator, Myra McClure.
In light of the continuing harassment of XMRV researchers (and journalists, and bloggers, I might add), the editors at PLoS have issued a statement where they unequivocally denounce the behavior of the XMRV True Believer Brigade, and unequivocally support the rights of scientists to perform and report their research without harassment:
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.
Though jackoffs like those harassing researchers (and journalists, and bloggers *cough*) might occasionally score a win, its important the public knows that the entities publishing said research will not tolerate that kind of behavior directed towards the scientists who publish in their journals, and the journal itself will not be harassed 'into line'.
Kudos to you, PLoS ONE, for making that crystal clear.
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@ERV
Please answer the question.
What is the diversity of all known isolates of HTLV?
At the moment I am watching otters playing on the lawn of my house we have a large park here with plenty of big trees several of which are hundred years old. One planted by the young queen victoria herself an Oak, Quercus canariensis from Algeria and the house has numerous rooms with paintings which all need cleaned sorted and wrapped in dust protection to protect them during the winter. so along with all the work labelling and sorting out and ill health brought on by humid autumn weather I have been unable to comment much on ERV blog . Are you good or evil is a very good documentary here in the UK the profile of a psychopath being charismatic manipulative and convincing through language and being liked fits a very prominent pioneering psychiatrist involved at the heart of ME research and the abuse storyâs here in the UK .He might know or have written articles with Myra McClure but I canât remember as I have lots of cuttings from newspapers the sort that lie around the bedroom and refuse to remain neatly sorted. The countess of Mar has been trying to highlight his abuse of power through Westminster. Some of your readers might also be interested to know that Henry duke of Northumberland died of ME myalgic encephalomyelitis in England
http://en.wikipedia.org/wiki/Henry_Percy,_11th_Duke_of_Northumberland
http://www.bbc.co.uk/iplayer/episode/b014kj65/Horizon_20112012_Are_You_…
@ Jennie Spotila:
I condemn any threats of violence to Prof. McClure.
However, I would like to see evidence of the alleged threats to Prof. McClure and Prof. Wessely; these have never been produced despite requests over a long time period. We would also like to see evidence that law enforcement considers âME militantsâ to be as dangerous as animal rights activists. This claim is not very credible because of the contrasting levels of violence carried out by the two populations (there only allegation of violence was that someone punched a researcher, I believe Michael Sharpe, in the face).
[b]Because misrepresentation is fundamental to Prof. Wesselyâs standard operating method and Prof. McClure has has made substantial misrepresentations to the press about bona fide ME research, more proof is required than merely the claims of the professors.[/b]
@ERV: I do think that Dr. Mikovits has overreached sometimes in her public comments. I really wish she would not do so, as accuracy is, of course, the very fundament of science.
I really do not understand, however, how you can be so incensed at the comments of Dr. Mikovits and yet seem to be ok with (at least I haven't seen you comment negatively on the following matters, though I do not read the blog regularly, so i may have missed it) equally or more outrageous comments by people such as McClure, Levy and of course by the small cabal of insurance lobbyists, trained as psychiatrists and posing as scientists, eg Profs. Simon Wessely, Peter White, Michael Sharpe, etc.
Additionally, personal sleight like "the oh-so-fatigued Andrea Whittemore" by you are offensive. Your outrage does not ring true since it appears you enjoy attacking diabled people.
I was feeling all on my lonesome on that blog for a wee while ;)
Never ceases to amaze me that peeps cannot simply say that what was reported in that Observer article about Myra McClure was simply wrong.
I was too ill to have read the Annette Whittemore stuff, so thanks for the links to your previous efforts.
Plos people are so right.. as a scientist, I might have a good idea or two about CFS, but would NEVER EVER start working on it. Too many crazy people out there.
I might not make a difference, but I am sure - and personally met already a few - that tens of talented scientists will not engage on this kind of research for good. at the end, the people that suffer the most from these bullies are CFS patients. They should act to silence the harrasser in their own interest.
You are unfortunately ignorant ERV, as to the situation with regards to CFS research in the U.K. It is not your speciality so I do not expect you to be an expert in this isssue, especially overseas.
To quote from the Observer article which PLOS refers to.
âthe militants are now considered to be as dangerous and uncompromising as animal rights extremists.â
This is just unqualified rubbish. No labs have been burned, no bombs have been found and no CFS patients have been freed from labs!
You do not know about the effort to undermine the legitimate concerns of CFS patients in the UK, nor how that links into benefit entitlements in the U.K, where these press articles about 'CFS terrorists' originate, nor how this is now reducing people to ridicule, being sectioned and destitution. If you knew about this you would know what McClure - innocently as you correctly say - was inadvertantly dragged into.
Now you are correct about the nasty emails and blog posts, which of course do nobody any good whatsoever. But to be so high handed about this I find very amusing, considering some your past rants.
Really this is a mountain out of a mole hill, for you ERV a mountain range because of your obvious, and perhaps founded hatred for Mikovits.
I am finding the academic community a bit whimpy about all of this to be honest. These are controversial issues, yet everyone is expected to be nice on the web when it hurts them, but free to mouth of when it suites them.
Who would not agree with the PLoS statement? - but it's based on people being nasty and personal on the internet, nothing else.
Let she without sin cast...
@David
Myra McClure, head of infectious diseases at Imperial College London, told The Observer: "I published a study which these extremists did not like and was subjected to a staggering volley of horrible abuse. One man wrote he was having pleasure imagining that he was watching me drown. He sent that every day for months."
You still think McClure is being "a bit wimpy" about all this? You're an ignorant jerk.
I don't care what the situation in the UK is with regard to CFS research. It seems to me a lot of excellent work was done in the UK to straighten out the mess created by the Lombardi et al paper, including work by McClure, Bishop, Stoye, Towers, Hue etc. The point is, there is no justification for sending threatening emails and carrying knives to seminars. You are only confirming my view that CFS patient advocates are complicit about this kind of unacceptable behavior.
TCC
Yeah, its not that bad at all David.
I mean, remember that time William Dembski sent me a series of vulgar, threatening emails "I know who you are I know where you work you better shut the fuck up"?
Oh WAIT. Those were from a self proclaimed CFS patient.
Well, remember that time Lenny Horowitz kept calling SEED and threatening legal action if they didnt take my blog down?
Oh WAIT. That was a self proclaimed CFS patient.
Hmm-- What about that time my Uni got a bunch of hate mail about me from anti-vax mommy warrirors, DEMANDING that they shut me up?
Oh WAIT. Those were from self proclaimed CFS patients.
Gosh, well, I guess a good example would be those animal liberation freaks who hunted down my personal information along with 'encouragement' to harass me.
Oh WAIT. That was on a CFS forum, with posts from self proclaimed CFS patients.
OH! Ive got one! How about when Peter Duesberg hunted down my research mentors personal info and harassed him about making me 'shut up'.
Oh WAIT. Once again, that was from self proclaimed CFS patients.
I have been blogging for fucking *YEARS*, and no one has pulled this kind of bullshit except for 'oh so fatigued' CFS patients. They arent doing anything wrong, you see, just harassing people, being fucking creepy, and walking the edge of taking things too far. But they havent actually taken it too far yet, and maybe they wont if everyone meets their demands. Scientists are such wimps. Really, if anything does happen, its the scientists fault for not taking their perfectly reasonable demands seriously.
Go fuck yourself, Davie.
@ better_not "They should act to silence the harrasser in their own interest."
What call in the Internet police perhaps ? None of these people are acting as part of any legitimate member organisation and for the most part they are either anonymous or pseudonymous. Most are wholly unresponsive to reasoned argument or appeals to any moral or pragmatic paradigm. How is a patient population, the majority of whom suffer chronic impairment and consequent lack of both capacity and reseources supposed to deal with people who refuse to engage on anything other than on their own perverse terms.
I can put myself out there (though I'm going to protect myself with pseudonymity) http://cfsmirror.blogspot.com/2011/01/saints-and-demons-in-cult-of.html but I can't force the CFS Talibanistas, CFS antivaxers, CFS conspiracists, CFS antisciencers, CFS wooistas et al to respond with anything but rage and disdane at my 'betrayal'.
@ David - that told her, really put ERV in her place, not her field why should ERV know anything about science publishing and intimidation ? Yep with that approach us CFSers will soon have legions of friends amongst research scientists, all of whom will be clamouring to solve the puzzles of our disease - NOT !
Kudos to you, PLoS ONE, for making that crystal clear.
Iâll second that.
(Having experienced a tiny piece of the fuss. (I wrote a people suggesting that media need to report the âstate of playâ when covering science stories and decided innocently to use XMRV-CFS as an example, giving my own description of the state of play for XMRV-CFS at that time...) The fuss was I got wasn't too bad, but it was enough to make me go around and check the CFS forums, andâyeahâI can see why people would not want to do research in the area - if what some people are writing on these forums is anything like what they're sending to the researchers, I can understand the concern alright.)
Plos didn't publish the first negative, I haven't diagnostically validate my assay papers.
Mikovits did not run to the media, the media asked all the scientist involved for a comment and Mikovtis was right McClure changed every variable, including not having any ME patients in the study.
Most comments from scientists and physician diagnosed patients are still on the comments section of that paper.
ERV Annette Whittemore has not harassed McClure. I am certain McClure would be happy to correct you on that. You should remove that statement as it is a lie.
Plos have not denounced the behavior of anyone as no one has ever been named. You are really doing what HIV deniers did in the 80/90s. Attacking people for being gay/sick and denying the existence of a HIV/HGRV due to ignorance.
"There are innumerable examples from very real instances of scientific misconduct where no action was taken until the case against the investigator was iron clad. "
Is leaving an assay out of your paper not scientific misconduct? That is what Paprotka et al did.
"The point is, there is no justification for sending threatening emails and carrying knives to seminars."
There is no evidence that any of that has happened. Where are the prosecution cases? Is McClure lying? I don't know, because there is no evidence but her claim, which has changed from being jostled in the street, by a unknown person on a random day. Many people carry small pocket knives. But is that a lie anyway? Are you not all using these hate stories in order to further your agenda of making an entire group of sick people outcasts. Is this not about you stopping biomedical research into ME.
Chances are, if you bury the finding without scientific evidence of contamination you will be infected too. What will you develop then and what help will be available. Someone here will end up regretting their actions if that happens.
The fact is ERV, HIV is the exception. Retroviruses generally don't behave the way that single retrovirus does. There are numerous genus of retroviruses that don't propagate using reverse transcriptase. Which is why they generally copy as is.
ERV, do you know the diversity of all known isolates of HTLV?
Attacking people for being gay/sick and denying the existence of a HIV/HGRV due to ignorance....
Statements like this is why posters like Farm always loose. UNLESS YOU ARE HIV+, DO NOT COMPARE YOUR ILLNESS TO THOSE THAT ARE...it is absurd to call erv a denier...It's insulting considering alot of us spend our careers trying to make life better for those who suffer..
Instead of saying that the threats to scientists are unacceptable....most posts offer up excuses..the best being that perhaps the person carrying the knife was doing so cuz they were going to have an apple as a snack...truly..WTF..statements like these make my brain leak out of my ears...Look at the reaction that "damn traitor" Ila Singh got..."she threw us under the bus" sigh..
I feel awful for the silent majority of CFS/ME sufferers...they will continue to suffer so long as the militants put their trust in Judy, WPI, and woo science..
and in the future if people are going to cry "scientific misconduct" please state your qualififcations for doing so...are you an expert Farm? Are you qualified to call Paprotka out..very few other scientist have done so..I'm sure you could get published and get the interest of the scientific community in a big way if you have evidence of misconduct...
*sigh* I swore I was not going to react to CFS/ME posters again...and here I am...I always loose it when HIV is brought into the debate..
Farm and hammer are the same person, along with Mar/Shotman/Belfry/Sox/POL on another thread. Rather than using one screen name like a normal human, they are sock puppetting and flipping through a couple IP#s, which itself is another attempt at intimidation (LOOK AT HOW MANY OF US THERE ARE!!). And note, I have *never* had a problem with socks on ERV before self proclaimed CFS patients.
And also note, his IP addy is in England. A nutbar in driving distance of several of the main targets in this fiasco.
IVI-- I have to say this over and over-- While there are unquestionably nut jobs who are using 'CFS' as a cover for not seeking help for some pretty blatant mental issues, there are also unquestionably normal people out there who are sick. It takes physical effort for me to remember the last group, and I appreciate folks speaking up about that.
jeez, good to see that it's socks instead of a bunch coming out of the woodwork. But how could you determine they're the same if the IP address is different? Same MAC address? I am impressed with your 1337'ness?
In Vitro @6
I never called into question ERV's intelligence regarding understanding scientific papers and intimidation, - that really would be an insult. Only her knowledge of the state of play in the U.K, I meant by that the Psychodynamic, and cognitive models of the disease and its dominance - I imagine only psychologists read those papers - maybe I'm wrong, after all I read In Vivo!
And Mary @10
"I feel awful for the silent majority of CFS/ME sufferers...they will continue to suffer so long as the militants put their trust in Judy, WPI, and woo science.."
I think a lot of the time people would like to hear more of this, but for some reason there is a path of least resistance that goes - 'Judy - BUNKEM - people with CFS seam to latch on to this therefore 'fucktards' - like Anti-vaxers, Creationists or whatever.
For people like me this is infuriating.
Stupidity comes from three sides - Firstly scientists, learned trained intelligent people F.F.S - trying to sell 'respectable' snake oil. Secondly, mesmersised patients who have seen the second coming - and it will be she.
And thirdly, most annoyingly, the 'skeptical community' that instead of teasing all this apart, just again get sucked into their favourite black hole meme of 'woo' hating - the anti vaxers, 'big pharma' critics, wierd rays from space etc - and this almost hard wired thinking permeates the net.
Everyone is being abused here, scientists and patients alike, by scientists and patients. Its not one versus the other.
(Sorry I didnt 'go fuck myself', though I did wonder what the sensation might be like for a moment or two.)
"You are unfortunately ignorant ERV,"
Yuck.
Does anyone really bother to read the content of a post that starts like that?
yadayadayada
I had an insanely bright future.
It is worse than HIV/Ass Cancer.
I'm being persecuted.
Psychology is evil.
I hate you.
Where is my check from the government?
Agree with me or I will sue/get you fired/kill you.
yadayadayada
Is there some kind of twisted factory that is plopping these monsters out all day?
I thought the internet had long ago stolen my gag reflex.
Then I started looking at CFS forums.
ERV @#11
"....there are also unquestionably normal people out there who are sick. It takes physical effort for me to remember the last group, and I appreciate folks speaking up about that."
Ditto.
Is there a federally underwritten test for Chronically Fatigued by Chronic Fatigue Syndrome Syndrome...aka Mikovitis?
Thanks ERV. Again.
As one of the "silent majority" I can see how difficult it must be for the scientific community to see that these idiots are only an obnoxious minority and obviously have issues they need to deal with. Thank you for acknowledging this.
Lest anyone think differently, I am a proactive advocate. I am not silent. I am sick and angry but at least I am choosing to direct my anger and energy into more productive tasks.
What some in the XMRV only crowd are doing is sickening and unfortunately the results are hindering progress and making it twice as hard for people fighting for true activism. If we do want to complain about a legitimate issue why should anyone give us credibility, when others are so shamefully stupid? They may not all be sending threatening messages but they are certainly complicit by making up erroneous excuses for the people who are or being silent. PWME/CFS who do not agree with them, need to speak up and stop being silent!!
These nutters are throwing tantrums. I say to them, grow up!!
You, ERV are the voice of reason!!
Laurie B.
I agree completely, Laurie. There are many legitimate, ongoing issues in regards to problems with ME/CFS research that are in danger of getting thrown in the same box as the XMRV crap. I think it might be due in part to the fact that ME/CFS patients are so used to psychologists and psychiatrists making up shit which one doesn't even need an education to debunk that some apparently don't realize that you can't really do that with actual, legitimate science.
While I'm still not sold on the whole 'obvious mental issues' thing (because if this were the case then wouldn't the vast majority of religious people have the exact same 'obvious mental issues' as well? There's a difference between being mentally ill and just being irrational, dogmatic, etc., isn't there?), I did think of something that might explain some of the more or less extreme examples that interested parties might have observed in this whole fiasco, namely the issue of disordered/disrupted sleep which occurs in ME/CFS.
Short summary- ME/CFS is characterized disordered/disrupted/non-restorative sleep, and this can have a profound impact on a person's emotional state, their thought processes, etc. This is even on top of another hallmark symptom of ME/CFS, cognitive dysfunction. I myself haven't gotten a good night's sleep in the past 10 years or so, despite trying all kinds of sleep remedies, both prescription, OTC, herbal, etc., as well as numerous forms of sleep hygiene. In fact when I was a teen I would stay up all night and sleep all day during the summers and finally got tired of it and fixed my sleep cycle in a week or so's time, so I can say that it's definitely not a matter of simple sleep hygiene.
This sleep/wake issue also correlates with documented sleep abnormalities occuring in ME/CFS patients, such as increased alpha intrusion and decreased REM sleep. For me, most nights are characterized by sleeping for a little while and then the rest of the night waking up/going back to sleep, waking up/going back to sleep, etc., with this sleep/wake/sleep/wake thing going on literally dozens of times, every single night. Sleep deprivation is in fact a legitimate form of torture for just this reason, so if certain ME/CFS patients might seem a little on edge, you most likely don't even know the half of it.
B as in B, S as in S. Evolutionists will stop at nothing to smear, intimidate, and retaliate if somebody publishes a paper that doesn't toe the theory of evolution.
Remember the persecution of Dr. von Sternberg?Google "Smithsonian-Sternberg affair" if you forgot.
To see how evolutionists who claim to be scientists react when their beliefs are challenged via publication of a refereed article in a peer reviewed journal, you might want to listen to this NPR piece:
Intelligent Design and Academic Freedom
@John
Your backhanded compliment in the first sentence you write is followed by the all too typical whine of well, it might be because of......?
I live with what you describe. I have three documented sleep disorders. I live with the torture as do many many others with this as well as other medical conditions.
Yet most patients are not choosing to condone violence, either by making excuses for it or not speaking out against it. Nor are they making stupid political decisions that are more about revenge and disrupting other's lives than helping the cause. Not everyone who is sick wallow in the past to the point that it perverts their thinking. Not all are all ignoring the evidence and making up the science as they go along fitting it into a preconceived notion of the reality they want and not the reality that is.
We all have our down times, times we want to lash out, raise our fist at the unfairness of this DD. It's part of the human condition.
But this really isn't only about being sick, is it? It's about people making stupid choices
You people make Simon Wessely, sound sensible. :>)
Wake up and smell the coffee.
@William Wallace
Most rational people understand that they shouldn't go to conservapedia. It's like watching Braveheart to find out about William Wallace.
The Wikipedia page gives a rather balanced view of the Sternberg controversy:
http://en.wikipedia.org/wiki/Sternberg_peer_review_controversy
If this "persecution" is the best you can come up with in all of the world of academic research, I'd say all those mainstream scientists are doing very well actually.
@ Laurie B
I'm glad to see you are not being so silent. It's important that many more of those who are still silent start to speak out not just here but on all fora where the self proclaimed M.E activists project a view of those affected by M.E/CFS that is wholly unrepresentative of what most of us want.
@John
Even if there are aspects of M.E/CFS or challenges in living with it that make sufferers vulnerable to 'acting crazy', it is wholly inappropriate to present that kind of defence in the context of a blog where the owner has experienced the kind of intimidatory language that is so patently unacceptable and (as Laurie points out) unrepresentative of most M.E/CFS affected people. And in any event why is this behaviour associated with M.E/CFS and not other equally distressing illnesses ? The only equivalent problem seems to come from that anti vax faction comprised of a small proportion of parents who have children with autism - note no actual auties or aspies engage in it, so the illness excuse is entirely absent there. This M.E 'activist' problem will continue until M.E/CFS affected people collectively and loudly voice the view that researcher intimidation is "not in my name".
IVI
I myself haven't gotten a good night's sleep in the past 10 years or so...
So? I havent gotten a good nights sleep in 28 years. My 'sleep' is entirely superficial, and it has been my entire life (when I was little I used to just get up in the middle of the night because I was bored, and made my dad read/play with me). Medication does nothing. Load me up on barbiturates? I will actually go to 'sleep', but I will be wide awake in a couple hours. But after 28 years of this, Ive figured out some tricks that work for me (hint: a big one is staying physically active).
You arent doing yourself any favors dramatizing symptoms that are a common human experience. You certainly arent doing yourself any favors using those common human experiences to excuse inexcusable behavior.
I am a CFS patient and happy to shout from the mountain-top that there is no place for threats, harassment or violence - especially in the context of public discourse and scientific research. This behavior should not be tolerated, regardless of our politics, beliefs or illness.
As has been repeated ad nauseam, the suffering of CFS patients has been compounded by disbelief from family, friends, doctors, policy makers and researchers. To be so terribly ill, and not be believed, is a dehumanizing experience. I find it bizarre and disturbing that some CFS patients respond to researchers' reports of threats and harassment with DISBELIEF. "Where is the proof?" "Maybe the researcher over-reacted." I cannot count the number of times a CFS patient has told me they were asked for proof or told they were over-reacting.
There is no excuse for - and nothing to be gained by - harassing or threatening researchers, reporters and/or bloggers. Nothing. I think CFS patients should take a giant step away from anyone who does engage in this behavior, and express zero tolerance for it.
Excelent!
>citing conservapedia on /sb/
http://www.history.com/images/media/slideshow/william-h-taft/william-h-…
LOL.
Oh, wait.
You're serious.
Right?
You are serious, right?
Okay.
But what you say is true only if you think using loaded language, dismissing government reports based on the report author's religious ties and/or connections to President Bush, and attempting to discredit an NPR reporters report based on the position at NPR she currently holds is balanced.
The wikipedia article reads like it was written by the NCDE (national center for a darwinian education). And the fact that it doesn't quote Eugenie Scott is a clue that this is the case.
Although it could also be a rare case where wikipedia recognized that Eugenie isn't the most reliable source.
Or, it could be that wikipedia doesn't allow one to cite oneself.
Regarding conservapedia, are there any quote mines in the article you mention? Were sources provided? Were the sources reliable? In other words, what specifically is your beef with the conservapedia article, other than conservapedia, like James McVay, supported George Bush and has ties to the religious right (as wikipedia points out in its article)?
Or do you want us to just dismiss the article based on the idea that anything conservapedia has on its site is a lie, because of who its owner votes for, and the God he prays to?
P.S. The NPR report is balance.
I do wonder to what extent the internet and self-appointed 'advocates' can/should be held responsible for coercion? Same could be asked of certain 'scientists' too for that matter I think in terms of scaring the bejesus out of an already vulnerable patient population.
Separately, though connected:
Anti-science and ethical concerns associated with the advocacy of Lyme's Disease: Lancet: http://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2811%297…
'...these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health...'
This might be best discussed if anyone wants to of course, on the Lyme's Disease page, though it does raise similar issues of a more general nature.
Poor Willie,
Mad at science because it doesn't agree with his non-evidence based ideas about the life, nature, evolution and the universe. Please don't feed the troll too much or it'll stay.
Jack @ 28
That is interesting and relevant. It just highlights the strange mess society is in right now with regards to science. And as a 'sceptic', well actually I prefer scientist (Rt'd), I understand In Vitro @6, and how as a sufferer and a rational person, reading some support forums is a sure fire way of inducing brain damage. (The fact that they therefore become magnets for the sceptical community -who sometimes conflate specious science with specious disease, is my only particular beef as previously stated.)
The only way I can find peace in this is to try and remind myself that these patient communities, are essentially random samples sociologically. I just have to accept that god fearing christians, catholics, muslims and witches get ill as well of course. It is infuriating to see them spread thier ideas of disease in whatever ward they are in, but I am more concerned with what that says about the current intellectual climate than the 'cures' they recommend. And this also goes for the many scientists and whatever colour M+M's they happen to think might help this month - bought in bulk of course.
the full story from www.thelancet.com
Advocacy for Lyme disease has become an increasingly important part of an antscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health
http://www.thelancet.com/journals/laninf/article/PIIS1473-3099%2811%297…
Attacking LYME disease sufferers by calling them denies of the viral cause of AIDS is I feel a little strong and also farfetched were exactly is the evidence coming supporting that claim?
This statement shows a deliberate attempt by some of the medical community to discredit by association .You donât like or agree with a minor section of the patient population so you compare them to muslin extremists or anti science network of fanatics or something else such as deniers of cancer.
Is this science or is it propaganda And anyway anyone should have the right to join a support group,
MS sufferers join support groups for multiple sclerosis a disease also seen at one time as not a real illness?
Autistics join support groups for autism is that extremism?
People should have the right to protest.
Aids as an example was only recognised when people who had it put pressure on their governments and medical institutions to take AIDS seriously .Far from reduced funding or diminishing respect for science they protested enough to get increased funding into science and investigation into viruses something to be commended.
And now we have julie/andrew/t gardener-- same person.
Again, *never* a problem on non-CFS posts.
I forgot to add that Lyme disease sufferers are also raising money through Lyme disease charities to fund science etc. this is good news for science and scientists who need funding something most supporters of science should support.
WW@26:
No. It is dismissed because they have an excellent track record of being dishonest.
Like you (quoting from your entry on Pharyngula dungeon list):
Further questions?
I donât know much about consevapedia and like Julie t gardener who I agree with i also donât particularly want to find out,
but this newspaper article about it was interesting to read from the guardian in the UK .
Conservapedia has a little hangup over evolutionThe "much-needed alternative" (for conservative Christians) to Wikipedia gets a bit stuckist over bacterial evolution. Not even auto-correct can save them...
http://www.guardian.co.uk/technology/blog/2008/jul/01/conservapediahasa…
@31 Whoever you are:
Are you one of the 'some'? If not what's the problem?
'SOME activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments.'
If you are and you 'advocate' on these issues then make your case though you will (and indeed are) being called on it.
Julia Newton has applied for some of the funding set aside in the UK by the Medical Research Council for research into the non-psychological aspects of CFS/ME.
She too it seems questioned whether or not to continue research in this area:
'The other important thing to remember about research is that the science is the science. Sometimes I read the blogs (I know I shouldnât but sometimes it is interesting to see how people respond to the scientific papers that I publish) and the comments can get personal and sometimes frankly rude !
The data is the data, and sometimes people might not like the answer, but thatâs tough ! because it would be wrong to misinterpret data or misrepresent the science.
Science is like that, you answer your research question, and move on to the next important question that needs answering.
Sometimes when I read the things that people write about me (who I have never met and have no idea who I am or what I believe) â I do wonder whether it is sensible to continue pursing studies in CFS/ME and whether I should go back to my roots and concentrate on fatigue in those with chronic diseases â but then I remember all of the research questions that I really want to answer and how important it is to inform our clinical practise in CFS/ME with evidence based clinical practise.
Fingers crossed we are successful with the MRC applications.'
http://blog.cfsmenorth.nhs.uk/other/dr-julia-newton-clinical-professor-…
Not saying that other scientists don't ask 'Why do I bother?' but come on! This is getting stupid!
Translation: "Don't listen to the NPR piece."
It's like the 13th floor of a hotel.
IVI. Kudos on your blog. I am now a fan!!
Laurie B.
Good to see all the sock puppets in one one location.
William Wallace,
Even if your preferred version of the smithsonian events is true, you still haven't presented any evidence for intelligent design, against evolution, or relevant to the topic at hand.
I have to ask: Why is this not on the original PLoS blog? Seems kind of odd.
'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 XMRVâs 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 â 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.'
http://blogs.plos.org/speakingofmedicine/2011/09/12/supporting-the-righ…
Then again if the critique was kept non-personal and non-conspiratorial (as well as constructive) as should be expected, I dare say things would never have reached the point where the original blog was considered necessary.
When did it all get personal? When certain scientist's took professional critiques personally perhaps and then set the agenda for others maybe?
Sorry that I am late... I just found that topic and only want to correct that the first "XMRV, not there" paper was published by Retrovirology addressing XMRV in prostate cancer!