This Requires A Very Good Explanation

[Undisclosed]

Um.... RustyJ.... you might be confusing kjm and KFG. You probably aren't the only one.

KFG started this thread. kjm may be feeling misunderstood if she feels we're attributing KFG's posts to her.

SOC -- Thank you so much for this. I don't get RustyJ's posts directed at me. I think you are right. This is not the first time my username has been confused with KFG's. So fair enough. Mistakes are made. Mistakes needs to be corrected. I think I am going to request a username change at this point.

I love your name change BTW, I associate it with "Silly Old Cats" for some reason. Anyways, I appreciate all your posts.

 

[RustyJ]

SOC -- Thank you so much for this. I don't get RustyJ's posts directed at me. I think you are right. This is not the first time my username has been confused with KFG's. So fair enough. Mistakes are made. Mistakes needs to be corrected. I think I am going to request a username change at this point.

I love your name change BTW, I associate it with "Silly Old Cats" for some reason. Anyways, I appreciate all your posts.

Hi kjm, I am sorry. There was nothing wrong at all with your comments, in my view. I had issues with some of kfg's posts. So now I've made two people angry. I deleted part of the last post. If you wish me to delete any more let me know.

 

[Angela Kennedy]

The two images? You think that they look like different shapes? I don't understand how. I'm really confused by this. Have you looked at the images Bob posted here, if you don't trust ERV?

I've not been keeping up with any plans ERV has to send a letter, or how people are reacting to her, but none of that alters the fact that those two images are of the same test result, and labelled in different ways. Personally, I don't think this is that big a deal, but that's a different matter, and I could well be wrong about that - I've got no idea what the expectations are for that sort of presentation.

re PACE: Are you talking about the 'normal range' thing? Or has there been something else? Thanks.

The overlain pictures are extremely fuzzy, and I can see differences! Now that might make me the little boy who sees the emperor naked. OR, it means I'm not sure what I'm looking at.

YOU THINK THEY'RE THE SAME? REALLY? WHAT'S THE MATTER WITH YOU?

We could go on like this all day. The issue is people are claiming with absolute confidence about things they shouldn't be claming with absolute confidence, claiming FACT, when they shouldn't. That's what is worrying me. On top of the current crazy going on over at ERV's blog.

I'm talking about the 'normal range' thing currently. All the other discrepancies this community has highlighted has been ignored by 'the scientist people', and indeed this normal range discrepancy too! Still - the attacks on the ME community go on and on and on and on...

 

[Angela Kennedy]

Regarding the PACE discrepancy. That was a LOT more serious than this possible problem with Mikovits image. that's WITHOUT the other massive discrepancies begin totally ignored by the alleged 'scientists' out there on these incestuous blogs.

Yet ERV wants to annihalate Mikovits' career, and get herself fame and fortune on the back of the letter she's going to write, and assumes is going to be published, on the basis of a possible discrepancy on a slide at a conference.

To those of us who actually are academics, it is amazing - and absurd, what is going on. I'm not trying to pull rank or give an irrational appeal to authority, just trying to encapsulate the absurdity of what goes on in some of these blogs.

 

[Esther12]

Esther12, Sorry I didn't respond. (At least I can't remember responding).

You already did Rusty, thank you.

I am having trouble following what V is saying, but I think V is saying that the WPI images are supposed to look the same. She is also saying the two images used by ERV have been doctored (they also look the same as each other). However the two images used by WPI are different to the images used by ERV.

The arguement is much more complex than one slide seems to look like the other. It is about background gels, gag and env etc.

If WPI has made a neglectful mistake by putting in the wrong slide (V says they haven't because the images are supposed to be the same), ERV has committed definite fraud by altering the slides.

I repeat, this is not my view, but V's. What I will say though is that most people on this forum would not have a clue about the finer points of this issue (including myself). Yet despite ERV's long history of vehemence and blatant anti ME trash, some forum members are carrying a burning torch to the castle in support of an argument they do not understand, from a person who hates you and me, just so they get to see WPI burn.

PS. If you haven't tried to read and understand what V is saying on the other forum thread, then you haven't bothered to get the other side of the argument, and you really shouldn't be making claims one way or another, no matter how politely couched.

It's only complicated in the way that the Trinity is complicated. V99's claims are nonsense, so if you're committed to trying to understand them, and turning them in to a cohesive and logical position, it can seem like a lot of hard work is needed. It's not. Just look at the images. Look at the little random blotches around them - they're the same. This random noise around the slides makes it so clear cut.

The overlain pictures are extremely fuzzy, and I can see differences! Now that might make me the little boy who sees the emperor naked. OR, it means I'm not sure what I'm looking at.

YOU THINK THEY'RE THE SAME? REALLY? WHAT'S THE MATTER WITH YOU?

We could go on like this all day. The issue is people are claiming with absolute confidence about things they shouldn't be claming with absolute confidence, claiming FACT, when they shouldn't.

This is like the Emperor's new clothes, but the little boy has already spoken. We've got a fat, naked man in front of us, and two different groups are arguing over whether his clothes are really beautiful or not. I'm pretty confident I'm on the right side about this, but you're right that we can't really progress the argument much - the evidence already presented cannot be bettered, so we just have different visions of it. I don't want to sound hostile about this, but I cannot help but be sure of myself here.

re PACE: I quite agree. But PACE is a sprawling mass of questionnaire results and statistical trickery, where as this is just two images that look the same. If it was as easy to spot the problems with PACE as it is to spot the problems with those slides, more sceptics would have been helping us. People interested in a bit of sceptical thinking, reading some Dawkins and making fun of horoscopes are not necessarily going to be willing to commit to the hours of work needed to critically assess PACE. That's disappointing for us, and leaves us in a weakened and more isolated position, but it doesn't mean that they're wrong about horoscopes!

 

[Angela Kennedy]

This is like the Emperor's new clothes, but the little boy has already spoken. We've got a fat, naked man in front of us, and two different groups are arguing over whether his clothes are really beautiful or not. I'm pretty confident I'm on the right side about this, but you're right that we can't really progress the argument much - the evidence already presented cannot be bettered, so we just have different visions of it. I don't want to sound hostile about this, but I cannot help but be sure of myself here.

Well I reserve the right to NOT be sure about something on the evidence available or not available. I actually think that is important to establish.

re PACE: I quite agree. But PACE is a sprawling mass of questionnaire results and statistical trickery, where as this is just two images that look the same. If it was as easy to spot the problems with PACE as it is to spot the problems with those slides, more sceptics would have been helping us. People interested in a bit of sceptical thinking, reading some Dawkins and making fun of horoscopes are not necessarily going to be willing to commit to the hours of work needed to critically assess PACE. That's disappointing for us, and leaves us in a weakened and more isolated position, but it doesn't mean that they're wrong about horoscopes![/QUOTE]

But nor does it mean they are right about other stuff! In the case of ME/CFS particularly. So when ERV and the BSers etc. etc. start shouting about ME/CFS and trying to impose their inferior knowledge on a highly knowledgable and often intelligent patient community, I reserve the right to call bullshit on them.

 

[Angela Kennedy]

I know - I must watch my potty mouth! (rolls eyes)

 

[Angela Kennedy]

At no stage did I accuse anyone of fraud and I would take anyone's suggestion of doing so very seriously indeed.

Read my posts before making these kind of statements. http://forums.phoenixrising.me/show...od-Explanation&p=208980&viewfull=1#post208980.

We could do all do with some detailed information about what is going on.

Remember there is a lot of research going on around the world - this story will have a happy ending.

Whatever your views of institutions/people/papers, we are all in this together. Nobody lose hope.

This community has a very bumpy ride ahead KFG at best, while all sorts of attacks are made against us (patients and supporters). If we really are in this together, we have to start adopting a zero tolerance to these attacks.

 

[Angela Kennedy]

Angela, I'm with you 100%. Always have been. I'm 100% with every fellow ME patient.

I was raising a very specific issue which most certainly required an explanation. This was not an attack.

I'm not sure what your point is.

But I see a lot of posting on this forum where people appear to be divided, and get quite upset, but it's obvious they are ultimately on the same side. That "side" ? Getting our former lives back. It's never more complicated than that.

This is a crappy day, whatever opinion anyone has on WPI. Crappy day.

The point is, KFG, that this community has been victimised by what Margaret Williams has caused 'A war of attrition' for years and years and years. And it is relentless.

We have no guarantee that justice and good sense and good science will prevail in our lifetimes (and in my case my daughter's lifetime). It hasn't so far.

What we get is constant misinformation and misrepresentation, as hominem and irrational appeals to authority from the ERVs of this world, from the so-called 'Science' journals, the 'researchers' who promote psychogenic explanations, the respective governments, the various anon blogs where any fool can claim "I'm a scientist you know" and this community is supposed to follow like slack-jawed lambs to a slaughter. The agent provocateurs, especially those that appear to be astroturfers (paid to demoralise and spread fear and doubt to this community) circle this community like sharks (I know, I'm mixing metaphors. Shoot me). Sometimes they get into the fishtank, onto these forums.

We are in for a bumpy ride with the latest news.

When you started this thread (and I'm not trying to offend you) you were exhibiting some naivite about the 'seriousness' of this possible discrepancy at a conference. This looked like it came from a deference by you to the claimed scientific authority of a PhD student known exhibiting irrational hatred of Mikovits and indeed the ME/CFS community , and who has never, to my knowledge, had anything useful or reliable to say to the ME/CFS community, especially about science. She and her cronies are unreliable witnesses. At one point earlier in this thread I believe you called that bunch 'scientists', and I pointed out they are nothing more than shouty anons! That's all we know about them, apart from ERV, a PhD student I understand.

I'm saying we have to wise up - those of us genuine ME/CFS patients and supporters - about the levels of 'trolling' and astroturfing that may be in our midst. Most media and internet-savvy people are aware of the potential for this kind of abuse. We've been victims of it for years. We have to stop deferring to self-claimed anon 'scientists'. We have to call bullshit when we see it, and that is what I am doing here, about the alleged 'seriousness' of this POSSIBLE discrepancy, and the level of unreliability in ERV's claims. She has a conflict of interest, and that cannot be ignored.

I do read ERV's blog. I've often wondered about the level of knowledge, which seems very low, about a lot of things, including academic life (!) but most importantly carries a high level of irrational appeals to authority and ad hominems, about this community and especially about Judy Mikovits, a scientist. How poor their 'scientific' or academic knowledge is has been confirmed with this latest fiasco.

And no, the Bad Sciencers, the ERV's, the Science journals are NOT interested in getting this community's health back at all! That's a real stretch of faith to believe that, when the evidence of the contrary is so stark and abundant.

I've been unfortunate enough to witness another full-on attack of the agent provocateurs against people in an area unrelated to ME/CFS this week. The tactics employed by these, and those who have been engaged in attacking the ME/CFS community for so long, are strikingly similar.

 

[Bob]

Um.... RustyJ.... you might be confusing kjm and KFG. You probably aren't the only one.

KFG started this thread. kjm may be feeling misunderstood if she feels we're attributing KFG's posts to her.

KFG and kjm, I'm always getting people with similar usernames confused! I have to work really hard to separate people in my mind.

Just thought i'd let you both know, because many other people probably have the same problem.

"Silly Old Cats" is good. My Silly Old Cat died a couple of months ago, but I still have 4 silly not-so-old cats, so the acronym is still appropriate. Too bad I couldn't get them all in my little avatar pic.

I love that name! You'll always be "Silly old cats" to me from now on, SOC.

I have a silly old cat as well.

 

[Esther12]

This community has a very bumpy ride ahead KFG at best, while all sorts of attacks are made against us (patients and supporters). If we really are in this together, we have to start adopting a zero tolerance to these attacks.

I'm not sure exactly what you mean, but I'm a bit worried that some might be seeing this in 'us vs them' terms, and I don't think we should.

Even if ERV hated all CFS patients, and wanted to keep us all ill forever, her post about the slide relabelling an image from the Science paper would still have been accurate.

I feel some sense of loyalty even towards those patients who I disagree with most passionately, because CFS is really f-ing confusing and difficult, and I don't feel comfortable being too condemning of anyone who is having to live with that sort of hardship, uncertainty and disinterest - but it's also important that we 'attack' all ideas which are likely to be inaccurate, and not stand together defending falsehoods.

imo V99's claims about all this are more likely to harm CFS patients than anything I've seen ERV write.

 

[Angela Kennedy]

I'm not sure exactly what you mean, but I'm a bit worried that some might be seeing this in 'us vs them' terms, and I don't think we should.

Even if ERV hated all CFS patients, and wanted to keep us all ill forever, her post about the slide relabelling an image from the Science paper would still have been accurate.

I feel some sense of loyalty even towards those patients who I disagree with most passionately, because CFS is really f-ing confusing and difficult, and I don't feel comfortable being too condemning of anyone who is having to live with that sort of hardship, uncertainty and disinterest - but it's also important that we 'attack' all ideas which are likely to be inaccurate, and not stand together defending falsehoods.

imo V99's claims about all this are more likely to harm CFS patients than anything I've seen ERV write.

'Us and them'? Of course there are 'us and thems': in all areas of life.

I'm saying that ERV's conflict of interest has to be taken into account, her self-aggrandisement, her ad hominems etc. etc.
because, whether or not she is right about the discrepancy, she is wrong about its importance, in her hatred of Judy Mikovits and her desire to big up herself and attack Mikovits and the ME community and its supporters.

Those are BIG problems. You can acknowledge that I would have thought.

And I am NOT defending falsehoods- that should be obvious to anyone reading. I'm a little surprised you've made that wrong assumption/implication here.

 

[Bob]

I think we must all be careful not to artificially invent "sides" that don't actually exist.

Although some of us have been arguing over details, and some of us have opposing opinions about the WPI, and the XMRV research, I don't see any people on this forum as being on a different "side" to me.

I see us all as being united in wanting a better outcome for ME patients.

Obviously there's always a few individuals in the world of ME who only wish to stir up trouble, but the majority people on this forum are reasonable, and are here for legitimate reasons.

There's also a few obvious scientists in the psychiatric lobby who are clearly not on our side.

I really hope that our community can find a way to come together despite the disagreements over the XMRV issues.

 

[Angela Kennedy]

I think we must all be careful not to artificially invent "sides" that don't actually exist.

Although we have been arguing over details on the forums, and some of us have opposing opinions about the WPI, and the XMRV research, I don't see any people on this forum as being on a different "side" to me.

I see us all as being united in wanting a better outcome for ME patients.

Obviously there's always a few individuals in the world of ME who only wish to stir up trouble, but the majority people on this forum are reasonable, and are here for legitimate reasons.

There's also a few obvious scientists in the psychiatric lobby who are clearly not on our side.

I really hope that our community can find a way to come together despite the disagreements over the XMRV issues.

But we cannot presume those OUTSIDE the ME community and its supporters, who attack patients and their supporters on a regular basis, are on the 'same side'.

And sadly, we do see evidence of those attempting to 'make trouble' on this forum, spreading worry, and doubt, and demoralisation.

It's a sad state of affairs, but this forum, especially when anonymous, cannot guarantee safety for its genuine participants. NO forum can!

 

[Esther12]

'Us and them'? Of course there are 'us and thems': in all areas of life.

I'm saying that ERV's conflict of interest has to be taken into account, her self-aggrandisement, her ad hominems etc. etc.
because, whether or not she is right about the discrepancy, she is wrong about its importance, in her hatred of Judy Mikovits and her desire to big up herself and attack Mikovits and the ME community and its supporters.

Those are BIG problems. You can acknowledge that I would have thought.

And I am NOT defending falsehoods- that should be obvious to anyone reading. I'm a little surprised you've made that wrong assumption/implication here.

I was a bit unsure about what your comment meant. My reading of what you wrote may have been affected by my surprise that you said those two images look different to you, so I apologise if it seemed I was straw-manning you. I tried not to tie my comment too specifically to what you said, but make it a more general concern.

I've not been paying attention to how important ERV says this matter is, I've just taken the evidence she has presented. I've said a few times that I don't think this matter is that important - but I could well be wrong about that. I've really got no idea what's going on with the WPI right now.

And sadly, we do see evidence of those attempting to 'make trouble' on this forum, spreading worry, and doubt, and demoralisation.

I'm almost always pro-doubt (apart from when two pictures are clearly the same!). At this point, it certainly looks as if we did not have enough doubt about the claims coming from the WPI. Thankfully I had a few people (like Kurt here) keeping my feet on the ground through all this - but it's incredibly easy to slip in to developing faith in beliefs about CFS just to try to escape the uncertainty and prejudices which results from being disabled by such a poorly understood illness. I've done this a couple of times, including with XMRV, which I think I was quite emotionally attached to even as I continued to insist that I thought it was probably unlikely to work out.

I wish we had more people coming here and sowing doubt about beliefs which may not be true, even if it is a bit worrying and demoralising, and I can't remember any posters here who I thought were problematic in this way (which probably shows I'm one of the problems!).

 

[Angela Kennedy]

Thanks Esther for your apology. That is appreciated.

The problem with 'doubt' being sown is when it is being done in bad faith, when the object of the 'doubt' is the integrity of a person, or of a community, for example.

That is different from mutually respectful dialogue about differences of opinion, between people confident that any 'doubt' is in good faith.

 

[Sam Carter]

But we cannot presume those OUTSIDE the ME community and its supporters, who attack patients and their supporters on a regular basis, are on the 'same side'.

And sadly, we do see evidence of those attempting to 'make trouble' on this forum, spreading worry, and doubt, and demoralisation.

It's a sad state of affairs, but this forum, especially when anonymous, cannot guarantee safety for its genuine participants. NO forum can!

And equally, one cannot assume that those inside the ME community are always acting in the interest of the community.

There is a small but disproportionately vocal cadre of ME patients who have established a cult around XMRV, and the WPI, and have bullied and intimidated anyone who disagrees with their dogma -- they speak ex cathedra but do not understand even elementary science.

"Spreading doubt", or encouraging sceptical thinking, is the only way to restore a rational and credible discourse.

 

[Angela Kennedy]

Hi Angela,

I understand the extremely dubious things that go on in regard to this illness probably better than you think I do. But, hard as it is ( and it is bloody hard ) I separate that from clearly scientific areas.

I was not naieve about the slide issue raised by Erv. I don't give a damn where it came from because it is a clear case of hard evidence you can see with your own eyes. It deserves a good explanation.

That's a totally separate issue from the kind of things you are referring to. I've really struggled, particularly when I first started to read medical literature a number of years ago, to totally close down the side of my brain that is a p*ssed-off, frustrated, confined to a biological jail, ME patient. I'm better at it now, but it's tough. Unfortunately to achieve anything of value in science you just have to leave the emotions out of it - it clouds the vision.

Advocacy is another matter. That's where all the frustration, and disbelief that we are dumped on a medical garbage heap can come to the fore. No good advocacy without passion. I wouldn't want my scientists to be advocates and vice versa - it requires very different mindsets most of the time. But I'm definitely starting to tell you about something you know far more about, so it'd be wise to shut up on that subject!

The slide was a scientific issue. There's no point supporting or donating to an organisation that is continually making dumb mistakes ( if that's the case ). Purely because no-one in the wider scientific community will ever listen to what they're saying. And that fails my ultimate test. I donated to WPI in the early days and would have donated more. But the data, from scientists with more experience and better reputations in virology, has suggested the initial paper is not reproducible. Even the WPI were not able to reproduce it in the BWG - the first independently blinded test they were subjected to. This is accepting a growing scientific consensus. It's not political at all, it's just science in action. And if you don't believe that, then think about this : why did John Coffin enthusiastically support this work in the early days ? Because he accepted the findings of the paper. The guy LOVES viruses and must have been looking forward to years of interesting research on a new one. But as more data came in and he did some work of his own, he changed his mind. The mark of a true, professional scientist. No politics, no conspiracies. Just data.

And complicating matters, and well worth a mention, is that there is frankly something bloody strange going on with this illness. At what point do doctors or other scientists suddenly collectively realise "Wait a minute. We have lots of very ill people in this diagnostic dustbin who don't have anything psychologically wrong with them. What's going on ?". It's my hope that the efforts of WPI and Silverman have brought the true nature of ME/CFS to the attention of some very skilled scientists. Because that will pay off big time. And don't get me started on the UK situation where the media's coverage of the illness is frankly bonkers, not just blatantly dishonest.

So we're really not far apart at all in the grand scheme of things. I will always give science the final word. That's not to say it's perfect or anywhere near it ( bungles and deception but also some beautiful triumphs ). But the truth is, absolutely and brutally, we will not get this illness sorted out by any method other than hardcore science.

I'm not wedded to any researcher or institution and never will be. My position is the same to all of them : Do your f*cking jobs properly and give me my life back, it's overdue.


P.S. On a personal note, I'm sorry to hear your daughter has the illness. It's difficult to get across to healthy people just how physically painful and unpleasant this illness is. As a mother you will be one of the few people who genuinely "gets" it. I'm not just trying to sound optimistic when I say I think there will be game-changing developments in this illness within the next 12 months. We all need to remember that other research groups never stopped working during the last two years - the data comes in. It's only a matter of time for all of us. Whatever's happening with WPI, other research is continuing and an answer is coming.

P.P.S. I'm sorry but I've posted much more than usual over the last few days and am frankly knackered. I hope you see where I'm coming from - I do have a strong belief in science but I'm not blind to the dodgy practices that do take place with regard to ME/CFS. I have to stop posting as my brain is well and truly fried.

KFG, you've presumed too much here, misrepresenting my arguments here as coming from emotion- when they actually do not. They come from rationality. While science is science, people claiming scientific authority are people, and subject to behaviour that is often not scientific or rational. ERV is one of those, frequently, and particularly on this occasion.

The rational response is to be aware of her conflict of interests. Which I'm pointing out.

 

[Angela Kennedy]

And equally, one cannot assume that those inside the ME community are always acting in the interest of the community.

There is a small but disproportionately vocal cadre of ME patients who have established a cult around XMRV, and the WPI, and have bullied and intimidated anyone who disagrees with their dogma -- they speak ex cathedra but do not understand even elementary science.

"Spreading doubt", or encouraging sceptical thinking, is the only way to restore a rational and credible discourse.

Spreading doubt a la ERV is NOT EVER going to restore a rational and credible discourse, unless ERV becomes rational and credible. Treating this 'dumb mistake' (KFG you seriously need to spend some time in academia, where dumb mistakes are two a penny!!) as fraud, catastrophic misconduct or stupidity (presuming it's even a 'mistake' in the first place) is neither rational nor credible.

There are of course, various ways of encouraging rational and credible discourse as well, btw.

 

[Angela Kennedy]

Hi Angela.

I've had a lie down but find my brain is actually fried for the day, as it were. So I need to stop.

I don't have anything to add my previous post, except to say I have spent time in academia - why would you presume I hadn't ? I don't feel the need to splash my credentials all over the place -it doesn't give my arguments or opinions any more weight. If you think I'm talking crap then knowing my higher education qualifications won't change that. I wouldn't have it any other way.

Being able to sound convincing doesn't mean someone isn't still talking complete BS. See all politicians for an excellent example.

Really must go. Whatever you think of me I hope this nightmare will end very soon for your daughter and for all of us.

We can have heated discussions but we're all on the same side as far as I'm concerned.

With the greatest of respect KFG, your deference to the ERV mob, and catastrophic interpretation of this situation, indicated to me you haven't spent time in academia. It wasn't an appeal to authority on my part- merely a stating of the fact that in academia there are a lot of 'dumb mistakes' far greater than this POSSIBLE mistake, that do not call for the attacks on Mikovits that ERV and her cronies are trying to whip up. That's a key issue here.