Anti-XMRV Blog -New post

[rebecca1995]

The identity of "offensive" bloggers is not legally protected in the US:
http://www.timesonline.co.uk/tol/news/world/us_and_americas/article6801213.ece

Thanks for pointing out that ERV's identiy is not protected, Sam.

Just consider carefully. What would you do if you knew that someone was downloading everything you write and then trying to hunt you down to discover your real identity with a view to depriving you - personally - of some future benefit?...

What would I do, if I were publishing offensive statements about a group of people based on their disability, and I realized those statements might adversely affect my ability to get a degree or a job?

I'd stop publishing offensive statements and stick to the facts. That's what I'd do.

 

[Cort]

Honestly, I can't imagine anyone would hire her. Isn't she a grad student? I would never let someone like that in my lab. She's unbelievable.

 

[Martlet]

Thanks for pointing out that ERV's identiy is not protected, Sam.

The police and courts have a right to discover the identity of abusive bloggers a well as abusive forum posters. As far as I am aware, the general public is not. None of us can hide behind an online identity in law, but equally, we don't have the right to stalk anyone or to deprive them of financial gain. It is this latter point that can open people up to legal action. If she loses potential livelihood, I suspect she could make a strong case for compensation. Lively debate is protected. Heated discussion is protected. Even hateful words are protected in some instances, but a concerted effort to destroy another person is not. And if American law failed her, she could apply to the British courts.

I'd stop publishing offensive statements and stick to the facts. That's what I'd do.

That road runs in both directions. Internet law is still evolving, but we are seeing more cases on this side of the Pond where the victims of harassment are winning their cases.

 

[parvofighter]

Seeing the forest for the trees

None of us can hide behind an online identity in law, but equally, we don't have the right to stalk anyone or to deprive them of financial gain. It is this latter point that can open people up to legal action.

Thank you for your clarity on this Martlet. As I see it, the ERV-ites are standing directly in the path of my recovery. The sooner XMRV is scientifically and robustly proven to be "it", or "not it", the closer we are to some kind of treatment - or more focused research. Or the closer we are to eliminating fruitless avenues of pursuit, so we can refocus limited research dollars on other promising biological research on ME/CFS. Having earned lucrative fees in the past for my work, intellectually flat-liners like ERV stand directly in the way of my earning an income again, and moving away from the financial precipice that our family has been teetering on since my abrupt ilness. As you say,

That road runs in both directions.

Why in heaven's name would you defend this vile blogger who has been defaming the most inspirational and eye-opening research in the entire history of ME/CFS? Why?

If there are lawless factions on this forum, do you really think your admonishments will make a jot of difference to their actions? And how do you think these lectures come across to those of us with abundantly legitimate concerns about ERV. ERV is the lunatic fringe. Not us. Please leave the policing to the police. Folks here are "big people". If a minority are playing with legal fire, it will come back to them. But for those of us who are lawful, these admonishments come across as completely missing the boat. In fact to me, they come across as a perversion of the big picture: that there are severely physically ill patients on this forum who are literally hanging in for physical diagnosis and treatment ASAP. And ERV's filthy obstructionism is toying with our very lives.

ERV is a vile poster who writes hateful and scientifically flimsy posts that denigrate our population of desperately ill patients who have ME/CFS. Her vile postings are personally disgusting, and personally targeted at not only our population, but also at severely ill patients such as Andrea Whittemore. And this dreck is also liberally tweeted around the globe. And as I have raised earlier, the so-called "negative studies" - trumpeted by ERV - have directly resulted in promising XMRV research (think WPI funding) being delayed. What in heaven's name are you doing defending her?

You are way out of line here. For heaven's sake, please see the forest for the trees, and keep the narrow scope and power of your moderating role in perspective. You are a moderator on a forum that is fighting for patients with ME/CFS. Your job is not to police the offline activities of lawbreakers that may not even be members on this forum. Please restrain yourself and and leave the policing to the police.

 

[natasa778]

Just consider carefully. What would you do if you knew that someone was downloading everything you write and then trying to hunt you down to discover your real identity with a view to depriving you - personally - of some future benefit? You would be forgiven for believing this person was stalking you. I really believe you are running very close to a very fine line between heated debate and legally actionable activity and am simply asking you to be careful - for your own sakes.

Martlet, are you really seriously defending this person???? Are you REALLY serious here?


OMG this is beyond ridiculous. I cannot believe I am reading these words on what is supposed to be a CFS/ME advocacy and support forum!!!!!!!! Coming from a moderator! ???

Somebody pinch me.

 

[VillageLife]

this forum is going horribly wrong.

 

[garcia]

The police and courts have a right to discover the identity of abusive bloggers a well as abusive forum posters. As far as I am aware, the general public is not.

I think you are confusing the right to discover with the right to anonymity. We don't have the right to e.g. write to an ISP/blog-hosting site and ask them tell us the identity of one of their customers. Only the courts have that right. But as far as I'm aware there is no specific law protecting a blogger's private identity. For example in the UK the repeated attempts by tabloids to discover the identity of call-girl-blogger "Belle de jour". Also in the US a Florida newspaper recently asked its readers for help to identify a blogger. Clearly if those acts were illegal the newspapers would have ended up in court.

It seems there is no right to privacy law per se for bloggers in either the UK or US.

 

[xanadu]

It took all of 2 minutes to find who writes ERV

This is a guest post by Abbie Smith, the blogger behind the Endogenous Retrovirus (ERV) blog

and find she is paid to write the ERV blog. So ERV doesn't slip off the hook as grad school banter any more than if it appeared in the WSJ.

Smith does not conceal that she blogs as ERV. However, ERV no longer appears on a free for all platform. It seems she left her previous host, Blogger.com, under a cloud. ScienceBlogs.com recruited her like all its bloggers, and pays her to blog for them.

E) I write this blog ... for which I am paid.

Unlike traditional and many new media, ScienceBlogs.com boasts

We do not edit their work and we do not tell them what to write about.

Some might imagine avoidance of editorial control gives you a competitive advantage in the shockjock stakes. Others might think that paying untrained writers to post their obsessive hatreds unvetted is a significant weakness in a business model. From what I've seen, Mikovits would have a field day bringing an action against ERV and ScienceBlogs.

 

[Mithriel]

Some very reasonable, pertinent posts here.

I haven't read all the posts so it may have been mentioned, but hate crimes against the disabled are either already laws or they are seriously being discussed. If these sorts of comments can't be made about different races they should not be allowed to be said about us.

I am a very tolerant person, slow to take offence and easy going but I am becoming angry about people with CFS who defend those who deliberately attack our patient group. As Parvo says, these attacks are not simply a difference of opinion they actively deny us proper research money and hope of medical developments, they leave people in dire poverty as benefits are denied and leave us open to mockery and derision.

I have given up reading a lot of threads because of the continual arguments of those who side with our attackers.

Our unity is a threat to those in power who have profited from our suffering. When this forum started we discovered what our symptoms really were and that we shared them no matter where in the world we came from. The voice of the severely affected could be heard alongside those who were the most visible giving an insight into how bad this illness can get and how much it is trivialised.

We need to get back to that somehow. We are fighting for our lives and those of our families, we are fighting for those who are too ill to even manage a forum and we are doing it with very limited resources, many of us can only tolerate a computer for a few minutes at a time.

That limited energy is having to be used arguing with those who seem to have unlimited energy to defend attacks on us. Discussion of varying points of view is one thing but at times I feel as if we are a civil rights forum being forced to deal with the ideas of the Klan at every turn.

I, for one, don't have the strength any more.

Mithriel

 

[girlinthesnow]

what Mithriel said.

I am very sorry Mithriel that you are forced to use your limited energy to fight this fight. I understand why you do but it is deeply wrong that you need to.

 

[VillageLife]

I, for one, don't have the strength any more.

Mithriel

I wish we could all be friends again. My life is so empty....I need you guys.

 

[muffin]

And yet we continue to fight over an idiot child. Enough!

 

[hvs]

Leave that blogger alone. She's a troubled person.

 

[jspotila]

How crazy is it when a leader of CAA, which is supposed to by our primary patient advocate organization, is defending ERV's defamation of the people who made the most important discovery EVER about this illness?

You have misread or misrepresented my posts. I have not defended ERV's defamation of anyone.

 

[Frickly]

Honestly....I have not read any of this blog until now. It took about two seconds to know exactly what everyone on this thread is talking about. My feeling is to ignore this horrible, disgusting, person. Martlet..this person has crossed the line and is in danger of some harrassement law suits herself. I have to agree with other posters on this thread. Why would you defend such a dispicable person? I am confused....

 

[akrasia]

You have misread or misrepresented my posts. I have not defended ERV's defamation of anyone.

Explicitly, no. But you have not given any argument about why ERV should be seen as a legitimate interlocutor for us and the WPI. The only thing you can say for ERV is that she has a soapbox, earned not by insight but by arrogance and a foul mouth. Do you really want this community to wade through oceans of s#*t to retrieve pennies?

If ERV had evolved a view that made any sense and was not being heard, you might have an argument. But she hasnt. Given that, using her as a way of criticizing the WPI, the Science article, and its ramifications, seems very suspect and invites a reading that casts doubt on your motives.

 

[Kelly]

Do not misinterpret - science is not a do it yourself weekend project

"It will take time to answer the many questions raised by the discovery of XMRV. The good news is that some of the anti-retroviral drugs licensed for treating AIDS can be immediately tested for their efficacy against CFS."
(Vincent Racaniello, Virology Blog, October 15, 2009)

I see no reason, even without any of the measurements outlined above, not to try anti retrovirals particularly those that have efficacy in vitro against XMRV.

Couple of clarifications: If you read carefully, Dr. Racaniello is not in any way shape or form recommending that CFS patients take anti-virals. He is talking about a scientific process by researchers designed to determine whether anti-virals are safe and effective for patients IF they prove to have a disease causing virus.

Please do not misinterpret or twist what is said.

Although not everyone is aware of it, medical science research is taking place regarding the use of anti-virals for subgroups of CFS patients who are proven to have an infectious process at work. Part of the problem is that CFS patients can and do test positive for many different viral triggers and viral combinations and anti-virals are often single virus or type of virus specific.

Or depending on location of viral loads patients can have a viral process at work that isn't found in the blood serum giving the false impression that there is no viral process at work. Not all viruses are all "lytic" all the time.

Many viruses also have tropism meaning they target specific tissues or organs. For example herpes viruses often target the neuro system.

Besides the type of virus, where it hides, and whether it is currently active (lyctic phase - http://en.wikipedia.org/wiki/Lytic_cycle) researchers are also looking at effective dosage and side-effects which may vary with the length of the illness, co-morbid disease, viral load etc. This isn't a do it yourself weekend project.

That is also why some CFS researchers are taking a different tack and researching the effectiveness of immune modulators in this neuroimmune disease.

PS ERV should know these things, she is just indulging in confirmation bias based on her lack of familiarity with the biomedical CFS literature.

 

[muffin]

I so LOVE when Kelly steps in with very wise comments. The girl really knows her stuff and she knows a lot of stuff!~

 

[Martlet]

Why would you defend such a dispicable person? I am confused....

Where on earth did you get the notion that I am defending her? Asking for civility is not the same as defending someone. It is not a case of "for us or against us." It is a case of applying the standards that this forum asks of us all. If ERV wrote her stuff in this forum, she wouldn't last ten minutes before we would be onto her and almost certainly escorting her to the door.

 

[akrasia]

Couple of clarifications: If you read carefully, Dr. Racaniello is not in any way shape or form recommending that CFS patients take anti-virals. He is talking about a scientific process by researchers designed to determine whether anti-virals are safe and effective for patients IF they prove to have a disease causing virus.

Please do not misinterpret or twist what is said.

Although not everyone is aware of it, medical science research is taking place regarding the use of anti-virals for subgroups of CFS patients who are proven to have an infectious process at work. Part of the problem is that CFS patients can and do test positive for many different viral triggers and viral combinations and anti-virals are often single virus or type of virus specific.

Or depending on location of viral loads patients can have a viral process at work that isn't found in the blood serum giving the false impression that there is no viral process at work. Not all viruses are all "lytic" all the time.

Many viruses also have tropism meaning they target specific tissues or organs. For example herpes viruses often target the neuro system.

Besides the type of virus, where it hides, and whether it is currently active (lyctic phase - http://en.wikipedia.org/wiki/Lytic_cycle) researchers are also looking at effective dosage and side-effects which may vary with the length of the illness, co-morbid disease, viral load etc. This isn't a do it yourself weekend project.

That is also why some CFS researchers are taking a different tack and researching the effectiveness of immune modulators in this neuroimmune disease.

PS ERV should know these things, she is just indulging in confirmation bias based on her lack of familiarity with the biomedical CFS literature.

I have no quarrel with most of what you wrote and if you have background information that anti virals as well as immune modulators are being aggressively tested in sub groups that’s great news.

I did not twist what Racaniello said. The only proof whether ARV work will be when and if people improve. And, hopefully, there will be formal studies. My point is that these drugs, properly administered, in the short term, are basically safe. Long term use is another matter and personally if we could address the immune system through immune modulators all the better. But the implication of his statement, and that of Ila Singh, is that for some of us, like Jamie Deckoff Jones, this might be worth doing.
While I don’t have it to hand, somewhere Judy Mikovits said that if it hadn’t been for the negative, flawed studies and the “whispering campaign”(Ruscetti) they engendered, we would have trials by now.

Whether XMRV is cause or trigger, or whether some other virus/bacterial infection triggers XMRV we’ll have to see. But given how long some of us have been sick, and the level of morbidity we suffer, some combination therapy might be worth a shot. It’s an individual’s call. My citing of Racaniello was not to endorse wholesale ARV treatment, but just to point out that someone knowledgeable outside of the WPI thought this a feasible proposition and as a counterweight to ERV’s assertions.

You can wait a lifetime, as many of us have, before receiving any treatment at all for this illness.
And one more point. Over the years many of us have used unapproved therapies such as acyclovir,valcyte, antibiotics of one kind or another, given to us by doctors who were willing to treat, for better or worse on a clinical basis. Several people have used/are using Ampligen on this basis, solely with the approval of their doctors.

Before the FDA process of approval was sped up as a result of very effective advocacy, many people with HIV got drugs from overseas, a 3 month supply which they took with the blessings of their doctors. The process is often much more ragged and disorganized than you portray. Racaniello's statement implied that there were off the shelf drugs, proven safe, that could be tried. I did not twist his words.