Article: Four Viruses! Alter Paper Confirms Retroviral Findings in CFS

You can view the page at http://www.forums.aboutmecfs.org/content.php?213-Four-Viruses-The-Alter-XMRV-Paper-Arrives

 

You seem to know it all. I suggest that you start writing - write the paper you want to see and send it out. In fact after all these comments I challenge you to do that. - I challenge you to put something on the matt instead of chiming in from the sidelines. How about it?

Sounds like a fair challenge?

I would never do such a ridiculous thing, because it would be misleading people, just like you are doing now. Its great that you write blogs Cort, keep doing it. But when you delve into technical details, you don't check your facts. It's not worth it. We need solid science right now, nothing else. We get the else from the other side.

Translation: It's easier to lob bombs from the sidelines at your articles than write my own - so NO, I DON'T ACCEPT YOUR CHALLENGE. I'M TOO AFRAID. And I'm not sufficiently embarrassed enough to walk now with my tail between my legs after turning it down.

Cort, you're doing a fantastic job here

Ditto. This site is a miracle for us. THANK YOU.

 

I never stooped to the level of a bully in the playground, why would I ever. The comment is illogical.

Let's be clear there is no way to point out the incorrect facts without referring to Cort. I was also genuinly shocked at how the facts were incorrect and the correct ones being abused. This is the same tactic as the psych lobby. We are drowning in their mess, and the public do not know where to seek the truth. We cannot assist them in creating confusion. However, I don't think of him at all to have any bile. And I will not stay shut when the WPI is attacked. If we loose these guys we will loose the next 25 years. Facts are facts, not an opinion. And when one is not able to describe a situation they should quote others. The headline in science magazine is very much in contrast to the blog. It does not paint the scene as if the WPI are now on one side and Lo et al. on the other. Alter has informed us that the WPI's paper has not been replicated, nor has it been bettered. There's is still the gold standard. Why when you are a patient you would in any way derail this research is beyond me.

And Kelvin Lord, never a good idea to question how the health of a patient is? Nor speculate on it? And don't assume I am not doing numerous things to support good charities.

 

Recovery Soon, SickofCFS, Kelvin Lord, Jonc, Sam Carter, Oceanblue,

I echo your sentiments from the past few posts.

Cort, I'm sorry you have to deal with such disruptions. I very much appreciate and enjoy the articles you create for us. I hope these back and forth exchanges you find yourself in will not hamper your ability to continue with your great reporting.

V99, is it really necessary to be so aggressive and combative? It seems most of us would appreciate it if you would tone it down a bit.

Best to All, Wayne

 

Sounds like a fair challenge?



Translation: It's easier to lob bombs from the sidelines at your articles than write my own - so NO, I DON'T ACCEPT YOUR CHALLENGE. I'M TOO AFRAID. And I'm not sufficiently embarrassed enough to walk now with my tail between my legs after turning it down.



Ditto. This site is a miracle for us. THANK YOU.

RS, I couldn't agree more

Cort,

I'm too wiped out to have followed all of this and I know that you know I appreciate ALL that you're doing for the CFS community.

This last bit by V99 went too far and I can't stay silent in good conscience.

I'd love to see all of her energy and smarts go towards articles and analysis. Maybe then you could take a few days off and simply critique someone else for a change.

 

I just want to add my support for Cort. I am so brain-fogged that I every time I post I wonder if what I have written makes any sense. If there is a mistake, we should be a little more forgiving!

 

This is the same tactic as the psych lobby.

That is just about the most hateful thing you could say to someone on this forum, and is totally uncalled for!

 

I never stooped to the level of a bully in the playground, why would I ever.
The comment is illogical.

1) Really Now?
2) Your Logic is Illogical.

If you know so much WRITE AN ARTICLE.

This article may have flaws but the subtext of your comments is calling his advocacy and motives into question whether you realize that or not.

There is only one sure fire why to get facts out in a manner that is suitable to you...WRITE AN ARTICLE.

Let me guess- Illogical?

 

If I chose to write an article myself I would get my facts right. That's the easy bit. But why should I do something I have no interest in doing, because you are upset that you are putting out incorrect information. That is a child's game. I will continue to get my information from scientific papers.

Then why have you wasted 24 hours of your time, and dozens of posts attacking Cort's article, when you could be getting your information elsewhere? This thread would be 8 pages shorter, and a LOT less draining for all of us, if you had just posted your disagreements, in one polite, respectful post like Parvofighter did.

I'm with Wayne, Recovery Soon, SickofCFS, Kelvin Lord, Jonc, Sam Carter, Oceanblue, (and I'm sure many others) -- you're clearly intelligent, you clearly have plenty of time on your hands, so if you're so right, and Cort is wrong (oh, and yes, the CAA), write a blog or article of your own, so we won't have to waste our time and especially our 'energy' wading through pages and pages of unnecessary posts.

 

I never stooped to the level of a bully in the playground, why would I ever.

Now that was funny. Thanks I needed the laugh!

 

I never stooped to the level of a bully in the playground, why would I ever. The comment is illogical.

<snip>
This is the same tactic as the psych lobby.

<snip>
>However, I don't think of him at all to have any bile.

<snip>
Alter has informed us that the WPI's paper has not been replicated, nor has it been bettered. There's is still the gold standard. Why when you are a patient you would in any way derail this research is beyond me.

V99,

I'm having trouble reconciling your comment about not being a bully and then equating Cort's actions (phrasing something in a less than perfect way or perhaps in a manner that you don't like) as a "tactic." Tactic implies intent and the tactics of the "psych lobby" have been to silence CFS patients and minimize their disease.

</snip></snip></snip>

However, I don't think of him at all to have any bile.

<snip><snip><snip>
Again, this is in consistent with the use of the term "tactic." I would say it approaches an attempt to bully. Who do you think gave you voice on this site?

</snip></snip></snip>

Alter has informed us that the WPI's paper has not been replicated, nor has it been bettered. There's is still the gold standard. Why when you are a patient you would in any way derail this research is beyond me.

No one (that I know of) has claimed that the Alter paper was a replication. And it's not an Alter vs. WPI. And while the WPI's paperhad many strong properties, I don;t know that anyone has called it a "gold standard." For the most part, the papers are complimentary but the differences raise interesting and important questions. Could the WPI have been too focused on XMRV? Maybe, but there may be reasons beyond methodology such as geographic distribution.

I know the situation in the UK is nothing short of maddening. That said, I'd recommend figuring out who the enemy is before you start firing off shots.


Cort,

Keep up the good work (and I promise to no blow my top if you want to go back and clarify an issue or two).<snip><snip><snip> It takes a lot to be out front with some in this group and I commend you for your years of having the courage to be repeatedly lead the way is such a level headed and constructive manner.

I am looking forward to V99's write up of the next big article to be published.
</snip></snip></snip>

 

I am looking forward to V99's write up of the next big article to be published.
</snip></snip></snip>

It's like a new Harry Potter. There are lines around the block.

 

This comment by V99 does have the advantage of being true:

I was also genuinly shocked at how the facts were incorrect and the correct ones being abused. This is the same tactic as the psych lobby.

 

In the USA you have a free press and the WPI. We have nothing at all.

What Cort and V99 have to say is interesting. Two people with different view points and robustly defending each others views points very well I thought. V99 is very worried about consequence of people reading mistakes that are read by people with a bad agenda as she comes from the UK where there is no choice and no trips to Dr Peterson. Cort takes her pressing concerns over accuracy as V99 telling him he is a psychiatrist which understandably was not a nice idea. Who's want to be a psych?!

I see this as a heated discussion, certainly not hateful or attacking anyone. Two heads clashing like rams in the field marking their territory and snorting. What is important is Cort and V99 understand each others view points, that through lots of repeated emphasis, now they do. Often to get a situation cleared it takes pleasentries to be dropped and facts and demands stated. That was done, and it was worth it for both sides. We, the viewers get a better article and V99 is less at threat by the UK psych's who do read this forum and actually take facts off it and put in newspapers. This is V99's point. I can see Cort would be irritated at apparent baiting and criticism, but it's actually an insistance rather than purposeful mean behaviour and personal criticism. Cort wrote the article and may feel hurt, V99 sees words and see's science and facts from science papers, rather than Cort's 'work'. It is Cort's work he wrote it, for sure, but there is no malice with intent to trash Cort's hard work behind V99's posts but a goal. Let me explain.

Not too long ago, Wessely's buddy wrote an article claiming many people were taking ARV's online. Indeed at the time, it was one person on this forum and this person never even proved it. Still, Wessely's friend pounced on this and used this an excuse to not treat UK patients with ARV'S even when testing positive for XMRV. (Incredibly). Again the psych spies read another fact about UK patients getting tested at VIPDX, read a thread (which had a mistake), read the wrong facts on here and reported it in the newspaper in the UK. So V99's apparent OCD on getting things right, for her in the UK does actually have a knock on effect for her and the UK community over here. 1 person became 'lots of people taking ARV's in the press. This forum was used a source of knowledge, and the psych's lied in the national press. They can do it again and they will.

So what I'm trying to say, is V99's persistant pressing manner is based on real consequences that have already happened. The psych's will read ANYTHING that helps their cause and stop UK patients getting even the most basic drugs for pain and neuro symptoms by discounting XMRV/MULV and keeping us folk here in a state of house arrest. In other words, V99 is having to be forceful in continually demanding every single piece of mistake in an article is fixed, because she and 250,000 people stand to lose another decade of life if the WPI's message fails in being delievered to its maximum effect in the UK. In the USA, with money you have some limited choices in health care, but in the UK the psych's own the disease and will make darn sure they do not lose the hold on power.

If two cases of this forum have already been used in the press over here by psych jay walkers, then more bad things can happen, especially as something as important as XMRV/MULV. If you understand what it's like to be in his country, V99's apparent OTT responses to Cort, actually begin to make sense even if they are 'in ya face' in the process. The problem is how else does one get their urgency of accuracy accross in a very limited time frame, but be nose to nose? It's unfortunate, but desperate times lead people to get fired up when their life and future is at stake.

I'd say this is much more about science and not V99 vs Cort. It's simply science and what science can be used for by bad people. We need science to be used by good people, so it has to be the best it can be, platinum not gold.

 

This comment by V99 does have the advantage of being true:

I'm about to bail on this because we're beating a dead horse.

But before I do...

You can only compare Cort's tactics to the "psych lobby's" if you assume he intentionally gave wrong information as they do. If anyone feels that way, please express that sentiment in no uncertain terms. Then we can have that conversation.

Otherwise, unless someone is willing to come out and say that directly, let's all assume that his motivations and great efforts are for the benefit of patients everywhere.

 

You can only compare Cort's tactics to the "psych lobby's" if you assume he intentionally gave wrong information as they do. If anyone feels that way, please express that sentiment in no uncertain terms.

YES, RECOVERY SOON, I DO BELIEVE CORT INTENTIONALLY GAVE THE WRONG INFORMATION, JUST AS THE PSYCH LOBBY DOES. Your point is?

 

What Cort and V99 have to say is interesting. Two people with different view points and robustly defending each others views points very well I thought. V99 is very worried about consequence of people reading mistakes that are read by people with a bad agenda as she comes from the UK where there is no choice and no trips to Dr Peterson. Cort takes her pressing concerns over accuracy as V99 telling him he is a psychiatrist which understandably was not a nice idea. Who's want to be a psych?!

I see this as a heated discussion, certainly not hateful or attacking anyone. Two heads clashing like rams in the field marking their territory and snorting. What is important is Cort and V99 understand each others view points, that through lots of repeated emphasis, now they do. Often to get a situation cleared it takes pleasentries to be dropped and facts and demands stated. That was done, and it was worth it for both sides. We, the viewers get a better article and V99 is less at threat by the UK psych's who do read this forum and actually take facts off it and put in newspapers. This is V99's point. I can see Cort would be irritated at apparent baiting and criticism, but it's actually an insistance rather than purposeful mean behaviour and personal criticism. Cort wrote the article and may feel hurt, V99 sees words and see's science and facts from science papers, rather than Cort's 'work'. It is Cort's work he wrote it, for sure, but there is no malice with intent to trash Cort's hard work behind V99's posts but a goal. Let me explain.

Not too long ago, Wessely's buddy wrote an article claiming many people were taking ARV's online. Indeed at the time, it was one person on this forum and this person never even proved it. Still, Wessely's friend pounced on this and used this an excuse to not treat UK patients with ARV'S even when testing positive for XMRV. (Incredibly). Again the psych spies read another fact about UK patients getting tested at VIPDX, read a thread (which had a mistake), read the wrong facts on here and reported it in the newspaper in the UK. So V99's apparent OCD on getting things right, for her in the UK does actually have a knock on effect for her and the UK community over here. 1 person became 'lots of people taking ARV's in the press. This forum was used a source of knowledge, and the psych's lied in the national press. They can do it again and they will.

So what I'm trying to say, is V99's persistant pressing manner is based on real consequences that have already happened. The psych's will read ANYTHING that helps their cause and stop UK patients getting even the most basic drugs for pain and neuro symptoms by discounting XMRV/MULV and keeping us folk here in a state of house arrest. In other words, V99 is having to be forceful in continually demanding every single piece of mistake in an article is fixed, because she and 250,000 people stand to lose another decade of life if the WPI's message fails in being delievered to its maximum effect in the UK. In the USA, with money you have some limited choices in health care, but in the UK the psych's own the disease and will make darn sure they do not lose the hold on power.

If two cases of this forum have already been used in the press over here by psych jay walkers, then more bad things can happen, especially as something as important as XMRV/MULV. If you understand what it's like to be in his country, V99's apparent OTT responses to Cort, actually begin to make sense even if they are 'in ya face' in the process. The problem is how else does one get their urgency of accuracy accross in a very limited time frame, but be nose to nose? It's unfortunate, but desperate times lead people to get fired up when their life and future is at stake.

I'd say this is much more about science and not V99 vs Cort. It's simply science and what science can be used for by bad people. We need science to be used by good people, so it has to be the best it can be, platinum not gold.

That really is a splendid post, Sunshine!

 

YES, RECOVERY SOON, I DO BELIEVE CORT INTENTIONALLY GAVE THE WRONG INFORMATION, JUST AS THE PSYCH LOBBY DOES. Your point is?

Good first step GHK. Now let's go further. Please explain what possible motivation a man who suffers from CFS like the rest of us, who has devoted his time, resources and energy creating this powerhouse of an advocacy forum, the likes of which has never existed before in the history of the illness, might have in purposefully falsifying information that could help cure him and us one day.

 

Lily and Sunshine,

I get that the psych lobby in the UK will jump on anything but if they are as prone to lying, exaggeration and fabrication as you claim (and I have no doubt that they are), they don't need Cort or anyone else to try and carry out their agenda. So they took one person posting here and turned her into a mob of people taking ARVs? Should we close down PR because that will be used as a tool by the UK psych lobby?

The problem in the UK is a lot larger than PR. The problems in the UK are not going to go away no matter how accurate and unassailable any here is in their posts. If Cort is the best the UK has in the way of "science" you're in worse shape than I imagined because I've never read anything that Cort has written as "science." His summaries are fair, even handed, infallible, and always well intentioned.

There has to be room for discussion and dialog and differing opinions without dragging out the accusations of using "tactics," intentionally lying, and comparisons to the "psych lobby."

The situation isn't going to improve in the UK (or the US) just because we refuse to assume good faith amongst each other and we insist on character attacks. The lack of civility has its own costs for a large number of PR members (and this behavior in itself provides grist for the psych lobby's mill everywhere).

ETA: If I were looking for ammunition to support my presumption that CFS patients have emotional issues, I'd find a lot more ammunition in the vitriol of some posters than I would ever find in anything that Cort has ever written. Note to anyone from the psych lobby reading this - V99 DOES NOT REPRESENT ME - I'm more like Cort (or at least I'd like to think I am)!

 

Lily and Sunshine,

I get that the psych lobby in the UK will jump on anything but if they are as prone to lying, exaggeration and fabrication as you claim (and I have no doubt that they are), they don;t need Cort or anyone else to try and carry out their agenda. So they took one person posting here and turned her into a mob of people taking ARVs? Should we close down PR because it will be used as a tool by the UK psych lobby?

The problem in the UK is a lot larger than PR. The problems in the UK are not going to go away no matter how accurate and unassailable any here is in their posts. If Cort is the best the UK has in the way of "science" you're in worse shape than I imagined because I've never read anything that Cort has written as "science." His summaries are fair, even handed, infallible, and always well intentioned.

There has to be room for discussion and dialog and differing opinions without dragging out the accusations of using "tactics," intentionally lying, and comparisons to the "psych lobby."

The situation isn't going to improve in the UK (or the US) just because we refuse to assume good faith amongst each other we insist on character attacks. The lack of civility has its own costs for a large number of PR members (and this behavior in itself provides grist for the psych lobby's mill everywhere).

Well said, CBS!

Cort is not a scientist, but a well-informed layman who has been generous enough to help the rest of us (even the science-literate) keep up with the current state of affairs no matter how ill we are. His summaries are wonderful go-to places for an introduction to what's up in our world. They're not scientific papers and should not be treated as such.

I agree with CBS that Cort has been even-handed and, imo, well-intentioned. In my experience Cort has been generous, even to a fault, in allowing a wide variety of opinions to be presented on his website and in these forums.

Much more damage is done to ME/CFS patients by the personal attacks (and attacks on other allies) that have appeared on these forums lately than was ever done by errors in a blog. We don't need to, as CBS said, provide grist to the psych lobby's mill.

If all the energy that goes into beating up our allies (fallible as they may be) were instead directed at fighting the UK psych lobby, we would all benefit immensely.

 

Good first step GHK. Now let's go further. Please explain what possible motivation a man who suffers from CFS like the rest of us, who has devoted his time, resources and energy creating this powerhouse of an advocacy forum, the likes of which has never existed before in the history of the illness, might have in purposefully falsifying information that could help cure him and us one day.

Heading to bed now. Looking forward to seeing that answer in the morning, GHK. Night.