One of the lessons learned from XMRV is that it’s important for scientists to admit when they are wrong. That is why I took down the image originally posted with TWiV #150.
I had intended for the image to be a counterpoint to T-shirts worn by CFS patients proclaiming them to be ‘XMRV Positive’. I felt it was equally important to advertise the message that XMRV is a contaminant. It was not meant to be disparaging or humorous. However a number of individuals felt otherwise, and told me so in rather harsh terms. Then I received the following email:
I am writing with a concern about an image shown on your website/video blog TWiV.
I have been religiously following you since the first news of the findings in Lombardi et al. I regularly turn to your blog for real scientific information and not the hearsay and pseudo scientific nonsense that permeates the internet.
As a long term patient whose health is deteriorating, I find myself often discouraged by the levels that the conversation regarding CFS drops to. It seems hard to difficult at times scientists willing to work hard without prejudice towards a cure for this terrible disease.
The image in question serves only to widen the divide between patients and researchers. While people suffer, the scientific community has a chuckle at our expense.
I would ask that they image be removed and replaced with one of unity. While XMRV did not pan out, patients are still in need. We need to know the scientific community is doing all they can to save us.
None of the earlier comments that I received about the image were logical and composed; they brimmed with vile. This respectful and reasonable request convinced me that the image was not helpful, so I removed it.
Thank you for removing it. I, too, felt very hurt when I saw it. I, too, felt it appeared you were making fun of a very sick and marginalized patient community that has already been made fun of for decades by those in the research and medical community, the media and the gov’t. My partner could not believe it when he saw it. We were both jaw-dropping shocked, actually. Felt like a slap in the face. So it is appreciated that you recognized how it was hurtful and took it down. In terms of the anger that you heard in earlier comments about it, please remember that most anger comes out of a place of deep hurt, and that hurt and anger are a natural response to years (again, decades) of being sick and bedridden and then on top of that, not being taken seriously, being ignored, marginalized, psychologized and belittled. We are so very sick. Many of us can’t leave the house or get out of bed to do our own cooking. We appreciate anyone who shows us compassion, and we feel hurt and anger when we get anything that looks like the same treatment we’ve been seeing for way too many years. — Rivka
The comments brimming with vile should have also been a clue that what you posted was inflammatory and offensive to patients. It is difficult for many patients to hold back anger at researchers who seem nonchalant regarding their severe life-long suffering. It is a desperate cry for help from a severely abused people.
Why should patients be respectful and reasonable toward a disrespectful and unreasonable post? Â Because your disrespect and lack of reason was made in jest and ours was made in serious sincerity? Â
Professor Racaniello,
That wasn’t an apology. It was salt in the wound. Even your “apology” starts out with another dig at Dr. Mikovits, and ends by insulting the patients she has been trying to help. You seem intent on proving that you are completely lacking in compassion. Have you no understanding that there are millions of human beings who are suffering terribly from an obviously retroviral disease? Human beings that have been neglected and abused, belittled, and denied an explanation for their illness, for decades. You were taking away hope with your blog image. It was consummate to saying, the scientific community doesn’t give a damn about you, just about being right, slapping down the upstart. Let’s have a party, express our glee, have a good laugh at the patients’ expense. The good old boys won. The balance of power has been maintained. Real science can calmly proceed. While new babies are born with it and huge numbers of patients circle the drain. It is an infectious disease. You are supposed to be a virologist. Why don’t you put your energy into finding out what is there? You are behaving very badly. A disgrace to the university you work for. The patient community is completely incensed and you just made it worse. It is truly pathetic that this needs to be explained to you.
Was that composed and logical enough for you?
Sincerely,
Jamie Deckoff-Jones, MD
Harvard AB ’75
AECOM MD ’79
Jamie Deckoff-Jones, MD LLC
P.O. Box 190745
Hawi, HI 96719
(808) 568-0220 phone
(808) 568-0221 fax
I, too, think that respectful discourse is desirable because it is more productive. However, this only works if respect is paid mutually. You wouldn’t expect somebody whom you just slapped in the face to respond with, “Excuse me, sir, but I wish you hadn’t done that. That didn’t feel good. Would you mind apologizing.” And you definitely wouldn’t except it from somebody who has been the object of abuse for decades, unless you are counting on Battered Woman Syndrome or Stockholm Syndrome working in your favor. I challenge you to put yourself in the position of one the most (if not THE most) neglected patient communities in this country and not feel like you have been slapped in the face by your actions. Maybe it’s true and you didn’t realize how inappropriate it was, but in light of such insensitivity, how can you be surprised by the patients’ reactions? More importantly, to put it back on the patients who angrily expressed how deeply offended they have been makes your apology seem disingenuous.Â
Jeannette Burmeister
You made an incredibly tasteless joke at my expense. Mr. Racaniello, I have been sick with Myalgic Encephalomyelitis, and I have seen my life dissolve around me. I was a successful lawyer with a wonderful life and a bright future when I got the worst flu I’ve ever had in my life and never recovered. I have suffered every day for 25 years. I am now disabled and homebound. You may think this is funny, Mr. Racaniello, but I do not.
You are the one who has over-reacted. You are the one who is pointing at people whose lives have been devastated and who suffer every single day, and you are the one who is saying, “Aren’t you funny?!?”
Now, instead of apologizing, you are taking additional jabs at suffering M.E. patients and the scientists who are trying to find a treatment for the illness. Isn’t there something constructive you can do with your life rather than purposely causing pain to people who are already suffering?
Do you have the courage to make a real apology to the real people your crude joke hurt?
Patricia Carter
I agree with Chris
One more thing: If it wasn’t meant to be humorous, then what was the point exactly?
I find Patricia Carter, Jamie Deckoff-Jones et all to be an embarassment. The image was a statement of of what the BWG found, nothing more, nothing less. It wasn’t an insult. It wasn’t an insulting comment on the state of affairs. Unfortunately, the people complaining just can’t come to terms with reality. XMRV is a dead end. Let’s move on now. Let’s not use people as scapegoats because we are upset at the results of the BWG. Perhaps, mosey on over to the forum that Pat Carter runs and look at all the crazy insults directed at virologists and researchers. People who live in glass houses shouldn’t throw stones. Pot, kettle, black. Stop using the sick card to complain at everything you don’t like. Grow up.
Jamie — you are seriously losing it. The BWG directly showed that false positives are a reality. Is CFS an obviously retroviral disease, where is your proof here. How did he take away hope. He did not. Maybe the BWG took away hope and you are using him as a scapegoat. I don’t find him to be a disgrace at all. You are obviously mentally ill and deluded at this point in time, judging by your post here and your blog. Please get some help.Â
I do not believe this post was not an invitation for people to run their mouths off at disabled patients.
Someone who holds an opposing viewpoint is not “mentally ill and deluded.” I’m not sure what your message is besides a verbal attack.
Are these overly dramatic comments about a mistake that Vincent Racaniello made and apologized about or the fact that the xmrv crowd’s perception that anyone who doesn’t believe in xmrv is an enemy and is therefore worthy of this type of scathing criticism?Â
The TShirt was about XMRV not about the condition of ME/CFS patients. In poor taste? Maybe. He apologized.  Dr. Mikovits should  learn something from his example.
Nice playing of the sick card.  No wonder people don’t take us seriously.
These comments are a prime example of the type of reasoning we see from the usual suspects. Pot meet kettle.
Â
I’m a patient, too. Get over it.
Laurie B.
After looking at this image again, it looks like the TShirt is just the title of Racaniello’s podcast. This makes some of the statements by the XMRV/HGRV crowd look even more ridicuous.
Take a deep breath. Judge not……….
Laurie B.
I appologize on behalf of the ME/CFS community for receiving the vile and disparaging remarks by a few individuals mostly in the WPI camp. The comments made by Jamie Deckoff-Jones, MD were especially troubling and were devoid of any professional decorum using character assasination as a vehicle to justify her objections. These people DO NOT represent the patient community at large even though they are under the mistaken belief they do. They only represent a very small niche of Mikovits and WPI supporters for the most part.
Given patients a false sense of hope is equally damnable offense then given the patient community no hope at all. The WPI, Mikovits and their supporters are at that junction. There are many excellent researchers who are working tiredlessly to find a cause and cure for this dreadful illness.
I laud your efforts through the years in being objective, admitting to mistakes when called for and increasing the knowledge of virology to many in the non scientific community.
I know about such letters that you received by patients as mentioned above. They are appalled at the behavior of a few militants who claim to represent the patient community and attack and vilify other preeminent researchers when their research does not fit their preconceived pseudo-scientific ideas.
After all it was Mikovits who said that we don’t have a reproducible assay to detect XMRVs in the blood. I would assume then all those who vilified those researchers who could not find it either in the blood …since they are calling you on the spot….will issue a public appology to those researchers as well for being correct on their research. Many within the ME/CFS community are sick and tired of their tirades. It promotes a disservice to all those involve.
Professor Racaniello,
I’m one of the patients who didn’t feel offended by that T-Shirt, but that’s mainly because I’ve seen so much worse in recent weeks by Prof. Wessely from the UK. I still think part of this behaviour on the part of scientists stems from a lack of understanding the seriousness of the disease. Not ALL ME patients are so sick, but remember when you talk about “the patients”, it also includes those who, sometimes as teenagers, are struck down so hard that they can’t eat, swallow, talk or move.
Maybe a good guideline for future “jokes” could be: Would you have worn this T-Shirt to visit Lynn Gilderdale, Sophia Mirza, or any of the other young patients who died from or because of this disease? I don’t think you would, because I think you are a decent man.
Please don’t forget that you are not writing about maths here, you are talking to and about real human beings, some of them in tremendous amounts of suffering.
Thank you.
1. It wasn’t an apology because there is no need for an apology.
2. An obviously retroviral disease? I think with that statement you showed that you’re the one who should apologize to the scientists and the reasonable CFS patients for ignoring science and harassing them for an innocent factual statement containing figure on a blog post.
3. Your condition is not the only diseases that causes suffering in this world. And considering that you had the energy to travel between states, I’d say there are millions of people in this world who suffer much more than you do? Should they have the right to harass you because you ignored them?
4. Just because people in the past (or in the present) ignored your disease doesn’t mean that you have the right to harass a scientist who is trying to educate the public by sacrificing his own personal time. And if you think you people are the only group who is capable of using a keyboard and post in these boards, think again! As a scientist, I stand with Dr Racaniello and science.
What is disrespectful about that post? If you’re saying that figure is disrespectful, care to explain why? It summarized what science article said in three words.
That’s quite the charge there, Mr. Messina. You’re equating a display of scientific proof positive that XMRV is a contaminant with people mocking a group of people who are being actively murdered by enemies. I think you’ve lost perspective; the scientists did not do this to you. Whatever the cause works out to be, so far “massive attempt by scientists to murder random people through some strange, unknown mechanism involving super spooky science” hasn’t panned out.
It is lamentable that people in this world suffer, but it is a reality that they do. Typing out angry screeds at people who elect not to ride your hobby horse of self delusion, and decline the invitation to be pissed off at people who’ve done them no harm does not, alas, actually constitute their having insulted you, or anyone suffering from anything, anywhere.
It is difficult for people to restrain their emotions. We see this day in and day out. We have a word for people who are unable to do so. Why you so quickly accept the the slightest perceived invitation to adopt the label irrational, or emotionally unstable is not immediately obvious.
To return to your utterly failed analogy, if we must plug the tender feelers by way of a forced (dare I say farced) exampled, this would be more akin to your accusing someone who was born a year after the holocaust started as being its cause. And the community of historians, say, wearing t-shirts with that person’s face on it and the words “Not Guilty” written on his forehead. While it might suck for those who survived the genocide to learn that the cause of their suffering had been misidentified, that no more implicates the person who wasn’t then born and couldn’t have been the cause than it does if a thousand patients, and a few–generously described–misguided researchers scream it must be XMRV.
The anger, which is understandable, is placed squarely on the one who accused the cause that couldn’t be the cause. Not those who proved that the putative cause is not even a potential cause.
It may have escaped your notice, dear sir, but the patients in the world who suffer do not do so alone. There are people who are perfectly healthy who’ve dedicated their lives to solving these types of suffering because to see their families, friends, cousins, neighbors and fellow humans suffering actually causes them suffering as well. Yet they do not respond in kind to your ilk by being angry at you for being sick thereby making them deal with all the emotions attending their passion to help find the cures to relieve as much of the suffering in the world as they possibly can.
Be angry that you’re ill. Perfectly understandable. And then come to terms with it. Saying what you believe to be a cause for your illness cannot be a cause for it is not an insult anymore than a bad weather forecast is the weatherman making it rain on your parade.
Thanks in advance for dialing back your rhetoric.
Regards,
The Justicar
cant you see WHY PWME and CFS are beginning to get nasty. Take a closer look as what gets written from a patients perspective.Did you see article regarding poor old Simon being threatened it came with a huge picture of a army sniper with cocked rifle and telescopic sights.
I didn’t think there was anything wrong with the image myself, but given how emotionally involved many people will feel when personally affected by this finding, it did seem likely that it would lead to an unhelpful reaction.
@0ac993851c98c23d1be36bb40efacce5:disqusÂ
Anger, yes. Nasty, no.
Once more Prof. Racaniello, I think you should be congratulated on the way you have covered this whole story. You didn’t shy away from a clear scientific analysis of a sensitive issue, and you continue to accept valid criticisms, even when they are hidden away in a mass of invective.
Thanks again for showing everyone the right way to discuss science.
http://t0.gstatic.com/images?q=tbn:ANd9GcTzmClQwFD5710FirTV46t7vXqpVrjrOHqYfNeJGt69ekSMpKIhYA
🙂 🙂 🙂 🙂
@ Christopher Messina — I am a “disabled patient” too. In fact, it’s been 13 years for me. I stand by my comments.
Angry are we? So sorry that the angry sick people made you mad.
Be thankful you’re not sick, bedbound and fed by a tube. Be thankful that you are not left untreated, unwashed and in a locked ward lying your own filth. Be thankful that you are not maligned and mocked on a daily basis.
Yesterday we heard the sad news that an 18 year old severe ME sufferer lost her fight. Two days previously a long-time sufferer and advocate passed. Only a month ago we lost another long-time sufferer and advocate. These people were abused – by the medical profession that purports to care for them, by the authorities, by the media and society as a whole. If they were given appropriate treatment and care they would still be alive today. If they were believed, they would be alive today. If their illness had not been trivialized by the media, society and doctors they would be alive today. If there was more than $3 per person in funding for this illness, they would be alive today. If society cared, they would be alive today.
People are dying and you are annoyed because frightened, sick people are angry? Grow a brain and grow a heart.
Thank you, Dr. Racaniello for realizing your mistake. When another death is reported our collective fear grows. When we are humiliated and mocked by society and the media our collective anger grows. If you follow our story you too will become angry at the injustice. Please keep reporting – we need all the allies we can get.
It was the sale of meaningless tests to chronically ill people that led to the T shirts in the first place, it’s the sellers of those tests who should be apologizing (and issuing refunds).Â
My comment is directed toward my fellow ME/CFS patients. I wrote the following on the XMRVGlobalAction Facebook page as a comment on a blog that was disparaging the Peterson/Levy article in the LA times. But my point is equally applicable here.
Other than the oddity of suggesting the name CFIDS instead of ME/CFS, I thought the article was a fine overview intended for a general audience. I saw Dr. Peterson speak a few months ago and I sincerely believe his life’s work is trying to help patients like us both as a doctor and a researcher. After the abuse we patients have suffered from the likes of Reeves and Wesley and their unfortunate influence, it’s understandable that we feel a little paranoid about what is said by researchers. Add to that the heightened tension over xmrv and WPI and we have the ingredients for a real drama fest. But we have to stand back and look at the big picture. And when I do that I feel that ALL the physicians and scientist who view ME/CFS as a real, biological disease are on our side. They may disagree and argue but they do so as a means of figuring out the truth of this illness so they can help us. As Billie Joe of Green Day said, “You gotta know your enemy.”. And I’m telling you, these guys ain’t it.
One is at pains to see how to read anger into what I wrote. Of course, you are among them since you conflate annoyance with anger as though the difference is imaginary. One is also remiss to note that pulling a page out of $cientology’s playbook kind of cedes the game from the outset.
Further, it’s a bit silly, actually it’s stupid to be frank, for you to go about declaring–on no evidence of any kind–that I should be thankful to be well. You clearly know nothing about me. You clearly also operate under the profoundly misguided notion that whether I am ill or well bears on jot on why you or anyone is unable to behave as an adult.
I am not maligned or mocked on a daily basis? Again, you declare this on no evidence at all. Not that it would add any power to my argument above, it is demonstrably not true.
I have a brain that seems, for the moment, to be completely functioning perfectly correctly. It is doing its job, part of which is to ameliorate my baser emotions and take account of data, logic and reason so that my model of the world might more accurately map the world’s true state.
You should give it a try; it’s glorious.
Interesting that you seem to have so much knowledge about Scientology. Even more interesting that being trained in science, I have no desire to read anything about the subject, nor have I even read the summary on the back of the book. Nice try at attempting to make me appear as if I’m part of a cult by virtue of an illness I didn’t ask for. Strangely enough, you can be sick with ME/CFS, angered at the treatment of sufferers and be a scientist at the same time. Funny that! Who’d have thought?
The image was a mock-up of a tee-shirt worn by patients; Â that made it a criticism of the patients, not the science. There was no need to ridicule the patients in order to get the text across.Â
This is why I personally was offended. It’s obvious from these comments that there are many people critical of the patients who must fight to stay alive and have learned to react quickly to perceived abuse of influence in granting research monies, bias or mistakes in choosing research methodologies and patient cohorts, and those who cast patients’ mental and emotional states as causes of their disease.
These are strategies which have been successful in the U.S. and U.K. for more than 25 years. There are still papers coming out about patients suffering from abuse and abnormal illness belief. Thus we do protest when we are belittled.
Sincerely,
Kelly Connor
The person who wrote this comment and those who liked it should be ashamed of themselves. If you’re really offended that much from a figure that says nothing about your disease that you dare to question the integrity of a brilliant scientist and to personally attack him, then your disease is not the reason that you are miserable.
If by so much knowledge you mean that I’ve watched the news, I read the newspaper and listen to people who’ve escaped from cults and then give talks about it, then I guess I’m a scholar. Most people would just call this being literate and an informed member of one’s society. It’s interesting that a passing intellectual curiosity in knowing something about things happening around one has a sideways meaning to you.
Do not try to change the topic. What you wrote is available for the world to see: “Be thankful you’re not sick, bedbound and fed by a tube. Be thankful
that you are not left untreated, unwashed and in a locked ward lying
your own filth. Be thankful that you are not maligned and mocked on a
daily basis.”
You wrote it, not I. You have presumed much about me on no evidence at all. This is, among adults, generally called just making shit up. We each have our standards for what is required before we can claim knowledge. Clearly, yours is inferior to mine.
The piece to which you respond dealt not with sufferers being treated poorly by anyone other than the charlatans who are lying to them. Indeed, the bit I wrote admonished an emotionally charged person to dial back the rhetoric and save it for those who’ve earned it: note, the ones saying they’ve been lied to aren’t the ones doing the mistreating.
Perhaps my writing was too plain and simple for you to follow it. The construction isn’t fancy, and it’s not poetic. It’s line by line straightly put. On purpose. Those who are desperate for answers deserve plain, frank discussion. Apparently for some people, like yourself, plain and directly put language is still a significant emotional and intellectual event.
Pity.
I would wear that T-shirt to visit those people in order to show them that virologists are doing the research to expose the mistakes of arrogant people who give false hope to the patients and refuse to believe in science.
“Please don’t forget that you are not writing about maths here, you are talking to and about real human beings”
That’s also true about scientists that your fellow patients choose to harass and threaten. Those people also have lives, families and highly likely that they also have suffering in their families.
“You clearly also operate under the profoundly misguided notion that
whether I am ill or well bears on jot on why you or anyone is unable to
behave as an adult.” Listen, let me give you a hint, if you are going to enter into conversation with me, at least try to write clearly and make sense. Whenever someone uses the words ‘grow up’ or ‘behave as an adult’ they invariably give their youth away. It’s such a silly and irrelevant statement really and just makes you look uneducated.
Dear God, why does the topic of ME/CFS attract such loons? They come slithering out out of the woodwork as soon as the google alert hits their inbox.
Yes, like when Christopher Hitchens said it to a Catholic Cardinal during a debate that in order to have the conversation like a serious grown up one must start with a long series of confessions of errors and apologies he was, naturally, showing how youthful he [Hitchens] was. At the time, he was only around 58. Your reasoning is tired and not even aphoristic. Pointing out the complete sophomoric Scooby Doo logic you’ve employed doesn’t imply anything about my age.
As for whether I make sense or not, I can only say that your reading comprehension skills do not, alas, constitute and error in my writing. Or an infirmity in my clarity. I’ll leave it for the audience-at-large to read it for themselves.
Insulting my education (lawl) will do no work in disturbing a single point I’ve made. Fail harder.
Because they’ve paid their quarter to ride the carousel outside the Wal*Mart, and you simply cannot tell them the ride is over. Do not touch their hobby horse.
Thanks for the explanation, Justicar, but actually I meant you.
“Your reasoning is tired and not even aphoristic. Pointing out the
complete sophomoric Scooby Doo logic you’ve employed doesn’t imply
anything about my age.
As for whether I make sense or not, I can
only say that your reading comprehension skills do not, alas, constitute
and error in my writing. Or an infirmity in my clarity.”
Instead of disproving my previous point you have confirmed it. Please don’t bother replying as I have no interest in continuing this conversation.
Sir, you are the one who is emotionally charged and I have to question why that is. What exactly is your stake in this?
Yes, I knew that.Â
I’m sure most people will read what I wrote and go, “I see what you did there.”
The phrase goes, suitably I dare say, “non serviam”. If you ask such a sloppy question, you can hardly be surprised when someone not unexpectedly doesn’t stay with it, turns it and around and spikes the net with it, now can you?
The XMRV ship has sailed. It carries with it only the husk of people’s broken hopes and the lies of Mikovits, et al, as its cargo. There are kooks in this conversation; it’s curious you cannot see where they lie.
Oh I can see exactly where the kooks are.
Again with the $cientology play. You’ve got it down pat.
I’ll translate: all evidence, real or imagined, confirms exactly whatever I say it does.
I win.
Don’t reply as I’ll reiterate that which I’ve declared is thus.
QED.
Don’t tell me you believe that ridiculous conspiracy theory that severely ill, disabled patients are threatening scientists and blowing up labs. ME/CFS sufferers can hardly brush their teeth let alone chase able-bodied researchers around forcing them at knife-point to change their findings. You sound like an utter loony tune.
Stop avoiding the question? What is your stake in this?
He has no stake in this, Elyn; he’s just a troll with nothing better to do than bait sick patients. He should be ashamed of himself.
I suspected that myself but he’s so good at it. Have fun, Justicar! I guess it beats trainspotting and playing with your model airplanes.