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Chicago Tribune: Manipulation alleged in paper linking virus

Cort

Phoenix Rising Founder
Hi everybody.

The point that has been lost here is that the only person with a commitment to doing serious research on the CAUSES (not symptoms) of ME is Dr. Mikovits.

You would preclude Dr. Montoya (viruses), Dr Lerner (viruses), Dr Lipkin (viruses), Dr. Huber (endogenous retroviruses), Dr. Klimas and Dr. Fletcher (Natural killer cell dysfunction, the Lights (dorsal ganglia root infection), Dr. Peterson (NK cell and cytotoxic T-cell dysfunction), Dr. Mella (rituximab treatment), Dr. Peterson (again) (CMX effectiveness), miRNA changes (Brenu/Staines), Dr. Chia (enteroviruses)......from that list? I think they all believe they are doing serious research on the causes of ME/CFS.

Dr Mikovits is a scientist not a public relations officer. You have the temerity to judge her, and on an entirely false standard.

Whether or not she is an official public relations 'officer' is meaningless. Every time she opened her mouth she was representing the WPI as was Dr. Deckoff when she was with them and as does Annette Whittemore now.

The standard is does she leave the WPI in an empowered position or not? Do you think the WPI is an empowered position right now? I think they were in that a position a couple of years ago...I don't think they are any more.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
To me this is the big danger at this point as XMRV fades. Are we going to embrace the scenario where harsh critics of well-liked researchers are simply out to refute the idea that ME/CFS has biological origins and discredit CFS sufferers or are they more focused on what they believe to be poor science? I believe the later; I know it can be hard to disentangle the two but I think the critiques are based on recent findings that the media has gotten interested in and not in a desire to discredit people with CFS.

I might agree with you, except that the attacks started before there was a reason to think that it was poor science. You know that when the paper was published, it looked good. It was peer-reviewed and published in an esteemed journal, and it was co-authored by researchers from top-tier institutions. There had already been papers published associating XMRV with prostate cancer, and they hadn't raised a big flap. No, what made the Science paper controversial was the association with ME/CFS, and that was only controversial because it refuted the psychosomatic theories and threatened the blood supply. So, yes, I guess I'm embracing the scenario that those critics who started trying to discredit the paper before good studies were done to refute are trying to discredit ME/CFS patients. My opinion has nothing to do with liking or disliking Judy Mikovits; I've been in the "let's wait and see what the science tells us" camp all along. I've never thought we should believe anything about XMRV just because Judy Mikovits said it (or because John Coffin said it). And I'm still in that camp about the latest brou-ha-ha. I'm waiting to see what the journal Science says.

I think that most of what's printed in the popular press about ME/CFS is based on ignorance or on the misinformation available from the CDC. But I think there are a few writers who would like to discredit ME/CFS patients, and I think that Trine Tsouderos is one of them. I think that suggesting that she is trying to be impartial does us a disservice.
 

floydguy

Senior Member
Messages
650
You would preclude Dr. Montoya (viruses), Dr Lerner (viruses), Dr Lipkin (viruses), Dr. Huber (endogenous retroviruses), Dr. Klimas and Dr. Fletcher (Natural killer cell dysfunction, the Lights (dorsal ganglia root infection), Dr. Peterson (NK cell and cytotoxic T-cell dysfunction), Dr. Mella (rituximab treatment), Dr. Peterson (again) (CMX effectiveness), miRNA changes (Brenu/Staines), Dr. Chia (enteroviruses)......from that list? I think they all believe they are doing serious research on the causes of ME/CFS.

Yes, but some of those things are long in the tooth like HHV-6. If they are so important and need funding perhaps they need a loud mouthed researcher that upsets the apple cart...oh wait a second we can't have that now can we?

Others are "effects". I am a patient of Klimas and respect her and her work but why is the NK activity dysfunctional - perhaps a nice biomarker but it's not clear if something has caused it like a continuous infection or whether it's a postviral issue. The same can be said of some of the others. I do want to see more on the dorsal root ganglia and some of the other topics.
 

currer

Senior Member
Messages
1,409
You would preclude Dr. Montoya (viruses), Dr Lerner (viruses), Dr Lipkin (viruses), Dr. Huber (endogenous retroviruses), Dr. Klimas and Dr. Fletcher (Natural killer cell dysfunction, the Lights (dorsal ganglia root infection), Dr. Peterson (NK cell and cytotoxic T-cell dysfunction), Dr. Mella (rituximab treatment), Dr. Peterson (again) (CMX effectiveness), miRNA changes (Brenu/Staines), Dr. Chia (enteroviruses)......from that list? I think they all believe they are doing serious research on the causes of ME/CFS.



Whether or not she is an official public relations 'officer' is meaningless. Every time she opened her mouth she was representing the WPI as was Dr. Deckoff when she was with them and as does Annette Whittemore now.

The standard is does she leave the WPI in an empowered position or not? Do you think the WPI is an empowered position right now? I think they were in that a position a couple of years ago...I don't think they are any more.


Hi Cort.

The fascinating point about Dr Mikovits HGRV research is precisely that it unifies many of the diverse findings of the researchers you mention.

That is why I differentiated between causes and symptoms in my previous post.

NK cell dysfunction, dorsal root ganglia inflammation, different viral infections, the response to rituximab,.....these are all effects (symptoms, if you like,) that could result from an underlying retroviral infection.

Retroviruses have now been linked to ME on three separate occasions. It is time they were investigated properly. That process has not even begun yet.

The retroviral hypothesis also provides a reason for the excess of certain cancers in recent decades, an increase in prevalence for which doctors have no explanation.

I have no doubt that ME as we know it is a new disease. We need an explanation as to why it has appeared and is becoming so common. Regular viral infections are unlikely to explain this new phenomenon.


With regard to your other point, I think it is a reflection on Dr Mikovits stature as a researcher that her statements were accorded so much interest, but I do not think she can be held responsible for the lack of a proper public relations department at the WPI.

(Nor would I criticise the WPI for this. We need to remember they were a very new and untried organisation and they have had a rough time.)
 

Andrew

Senior Member
Messages
2,513
Location
Los Angeles, USA
Perhaps but the problem remains who is the DECIDER on what weak science is. There's a lot of weak science regarding PACE, anti-depressants, etc. but I don't see Trine, ERV et al demanding more accountability in these areas. We all know who the deciders are: insurance companies, pharma and others that want to control public and private $ going to areas that benefit them. Trine et al are happy to go along so that they can win "journalistic" awards and get trips to Hawaii, bring $ to University research, etc.

Good point. WebMD runs an article that points the the PACE study and describes is as studying CFS as it is defined in the US. The Oxford Criteria is a different syndrome with only a few overlapping features. So why don't journalists ever mention this. It's not because the PACE trial is small in comparison. This treating of different syndrome definitions as if they are interchangeable has been promoted by our own CDC for years. And promoted by many scientists. Why isn't that big news? It's not as if it's a secret.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
You have a very good point. PACE trial unfortunately never came under the scrutiny that XMRV has probably because its not such a hot button topic - the PACE findings and the CBT scenario, which has been around for a long time, has been more embraced by the media - although not totally embraced for sure.

I agree its not fair. The PACE trial should have been dissected by the media and researchers ad nauseum but I imagine if a reporter said she wanted to do an in-depth analysis of it to her editor - he would have said no.
I think you're right about that.

On the other hand a retrovirus is a hot topic. One goal that I can see is getting enough coverage of CFS that things like that do happen - that things like an over-hyped PACE trial are news worthy stories.
But the PACE trial got lots and lots of press coverage, along the lines of "Study shows exercise cures CFS," so it was considered newsworthy. It just wasn't scrutinized to see if the press releases were supported by the study. If the media were really interested in a story, the fact that the British government had spent umpty million pounds on a study that showed...virtually nothing...should have been the headline. That's the kind of thing that makes me think that there's an agenda or that the media just regurgitate science press releases without scrutiny, or a bit of both.

There's no problem getting a story that supports the psych viewpoint published. It's the medical theories that are automatically considered controversial or, more often, ignored.
 
Messages
1,446
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ixchelkali wrote: I think that most of what's printed in the popular press about ME/CFS is based on ignorance or on the misinformation available from the CDC. But I think there are a few writers who would like to discredit ME/CFS patients, and I think that Trine Tsouderos is one of them. I think that suggesting that she is trying to be impartial does us a disservice.

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Well said ixchelkali!!!!! I agree with very many of your well considered points!
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Sorry, but am too wiped to be articulate tonight, but I am shocked to the core by what is going on this forum right now in terms of siding with a very dodgy journalist (Tsouderos) and the young lass ERV - who has been getting away with behaving like an eight year old playground bully for a very long time, and who has brought science into disrepute by her out of control and childish behavior. I must say I will never view scientists the same way again after reading ERVs offensive and spiteful juvenile rants. Its the science world that has lost out by giving the young minx ERV credibility.
.
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
I agree that such claims were unprofessional, insulting, and damaging to WPI's reputation as a responsible research institute. I really, really wish Dr M and the Whittemores had been more professional all around.

However, they are not responsible for calming down the patient community. They don't own, organize, or control us in any way. We, as individuals are responsible for how we react, not WPI or Dr M. To blame them for the reactions of some loud-mouthed and undocumented patients is patently unjust.



Um.... let's put the blame where it belongs. WPI and Dr M never cast us as "a kind of rabid group of patients". That was done primarily by the media with support from the likes of ERV, Wessely, Reeves, and even, sadly, Dr Coffin with his Joan of Arc crack. They have used the flaws of a research organization to paint the entire patient population as equally (or more) flawed. Bad logic and extremely damaging to our cause.

If these self-proclaimed media champions of ours really believed in the reality and seriousness of ME/CFS, they would be writing stories about how ME/CFS is so poorly served that we cling to the tiny bits of hope offered us. Instead, they cast us as unscientific, emotionally unstable sheep. Their perspective is not particularly well hidden, even if it's not overtly expressed -- just like all other kinds of prejudice.

On the whole I agree with you, SOC. But if we're going to put the blame where it belongs, the patient community --or rather, parts of it-- need to accept some of the blame, too, for casting aspersions on the integrity of any scientist whose study didn't support the 2009 Science paper. For suggesting that if they didn't find XMRV in ME/CFS patients, not only was their study flawed, poorly designed, or sloppy, but that they were part of a conspiracy against patients. Or that they had been "got at" or bought. That for whatever reason, they didn't want to find XMRV. They were, in short, vilified. Many people in the patient community have divided researchers into good guys and bad guys, based on whether or not they found XMRV. That hasn't served us well, nor endeared us to the scientists who were trying in good faith to arrive at the truth. Granted, some of the negative studies were flawed or sloppy or even undertaken in bad faith, but it would have been better if we patients tried to judge the studies on their merit, not on their outcome, or as if the researchers were wearing white hats or black hats.
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
I don't think the science world has given ERV (Abbie Smith, BS Truman College, Phd student Oklahoma University) credibility. It is the pseudo-scientific skeptic club (who, as a group, think they're smarter than the rest of the world and need to point it out to us) who are giving her attention and play time. The ME patient community has it's own branch of that club, although they don't agree with ERV (Abbie Smith, BS Truman College, Phd student Oklahoma University). I guess it's a new fad. :rolleyes:

Siding with dodgy journalists and student blog writers shocks me, too. Let's hope that as a community as a whole we haven't genuinely sunk to that new low.

Recently I've been reminded of another Nana-ism -- "Trust should be earned, not given."

SOC, who do you think are the 'ME' branch of the pseudo-skeptics?

And are you saying the science world will not give ERV credibility in this issue?
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
On the whole I agree with you, SOC. But if we're going to put the blame where it belongs, the patient community --or rather, parts of it-- need to accept some of the blame, too, for casting aspersions on the integrity of any scientist whose study didn't support the 2009 Science paper. For suggesting that if they didn't find XMRV in ME/CFS patients, not only was their study flawed, poorly designed, or sloppy, but that they were part of a conspiracy against patients. Or that they had been "got at" or bought. That for whatever reason, they didn't want to find XMRV. They were, in short, vilified. Many people in the patient community have divided researchers into good guys and bad guys, based on whether or not they found XMRV. That hasn't served us well, nor endeared us to the scientists who were trying in good faith to arrive at the truth. Granted, some of the negative studies were flawed or sloppy or even untaken in bad faith, but it would have been better if we patients tried to judge the studies on their merit, not on their outcome, or as if the researchers were wearing white hats or black hats.

I have to disagree. This community has become highly knowledgeable, and all people wanted was good science. When that didn't happen they critiqued it. That's not unreasonable.
 

Angela Kennedy

Senior Member
Messages
1,026
Location
Essex, UK
I agree with you 100%, ix. A subset of patients (or people who claim to be) has done the public image of ME/CFS a vast amount of damage.

I hope most sensible scientists realize that 1) patients are no more or less intelligent or scientifically knowledgeable than the general population, and 2) that the pseudo-skeptics among us are a limited, if loud-mouthed and nasty, subset and do not necessarily represent patients as a whole.

This is a very vague generalisation and categorisation of ME community members as 'baddies' SOC, especially as you do not make clear what you mean. You could, for all we know, be bad-mouthing anyone who ever has made a legitimate objection to any manifestation of poor science, because you have not clarified what you mean.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
I think it is wrong to blame the patients.

Could this thread agree on who exactly of the non WPI researchers did a great job in their study design, isn't blighted by the VP62 contamination problem, gave equal weight to CFS and Prostate cancer when they had negative results and was fair in interviews and the media with no spin?

How many nominations will we have that everyone here is unanimous on?
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Esther
my point on cancer, is that almost everyone has their heads right up their asses ignoring the huge elephant in the room: WTH are cancer rates soaring?
Not even accounting for aging population, better diagnostics, smoking and known environmental risks like asbestos, can the numbers be accounted for (and that has been shown by hard fact, not too long ago).
When folk, be they researchers or J. Q. public, raise the subject...the silence is deafening. Why?


Give an odd example I've raised before:
Frankly, no one (comparitively) gives a rat's ass that 40,000 Americans, 3,000 British folk..a million world wide, each year are torn to pieces or burned to death on the roads.
And for everyone one killed there's a hell of a lot more left disabled, unable to work suffering,for life.
Terrorists,spree killers, drug addicts etc don't even come close to that death toll, but get huge attention...why?
Partially because folk are dumb enough to see this is "acceptable" losses, but largely because it threatens a vast financial/political web of interests so the road deaths are deliberately "glossed over"

There was a huge conspiracy betwen the auto manufacturers (and others) to not push for more safety features because that would up costs...that really happened with certian firms up to early 70s.
People who protested, investigated etc suchs areas routinely got screwed over, blackballed, spied on by private investigators, etc.
See how the tobacco companies worked.

Big Business, government and the whole rotten interconnected shebang, have learned from past expose's, and work to stymy things that cause trouble.
It's not about whether the "trouble" is true or not, merely that it causes change and upset to vast profit and power, and they won't allow such.
Alas, the medical area is deeply involved in this crap due to the pharma corps, and doesn't have to be fraud or corruption, often merely the way things get "pushed", who gets funding, and who doesn't etc.

They also use pundits and "anonymous sources" (today they cna use the net, such as by pundits as of old, or paying someone saps in a developing nation to spam emails to alter public opinion, or give weighted info to otherwise honest people who then disseminate it not realizing they've been used)

have folk never read up on "black propaganda", and how such has been run all the way back in history? See the War of 1812 and the "yellow press" and how things were manipulated even back then, or heck, all the way back to how Ceasar and his ilk played their public!

Mikovits, and others upset apple carts and so had to be shut up, and best way to do such is to make folk think they are con artists, because folk never forgive being lied to or used and despise such more than damn near anything else, hence when folk feel a person will con them, they will distrust 'em, even if later evidence vindicates them, the mud sticks.

If Jesus Christ was alive today, the Elite would have him painted as Al-Qeda's top baby killing psycho before the week is out, and "droned" or renditioned the week after! :p
It's the lesson of history, tech may change, but folk largely are still the damn same. What they cannot control or own, they will destory, subvert, corrupt or sabotage

"If you want to make enemies, try to change something"
Not about whether they are right or wrong, merely the threat of change to vast power and profits.

There's no "New World Order" merely many powerful people, in many disparate groups, with agendas, and if say, one lowly pleb upsets their apple cart, suggestions are raised, lackeys informed, bribes tendered, fat pensions, hiring to new spot, or old favours brought up etc
It's not the "Iron fist in the velvet glove", no, just the "very big sponge in a flabby hand" ;)



Please, there is no cover-up or conspiracy going on in this case. Stop connecting non-existent dots.

In retrospect, Coffin and many others actually deserve an apologize from the many people that tried to discredet his motives and attack his character. And while I really hate to say this because of the awareness she brought to ME/CFS research, Mikovits seems the one to blame here.

Did you watch the video of the CROI conferefence, hm?
Did you note how Stoye and others treated the subject and how many folk were excluded from invitation?
That is NOT the way "Science" is supposed to behave :/
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
I have to disagree. This community has become highly knowledgeable, and all people wanted was good science. When that didn't happen they critiqued it. That's not unreasonable.

I agree that this community is much more knowledgeable than the general public and better able to evaluate scientific studies than most scientists would expect. I know I've had a crash course in virology, especially retrovirology. I already knew how to read a scientific paper, but I've branched out into new areas of science.

I also agree that critiquing the studies is not unreasonable. I'd go further and say that it's highly desireable. Debating whether the paper supports the conclusion is useful, too. All good.

But I disagree that it stopped there. I read a lot of character assasination of any scientist whose paper didn't support the Lombardi/Mikovits paper, and I believe that was uncalled for, largely unfounded, and in some cases, absurd (suggesting that Daniel Peterson had gone over to the dark side or that Ilia Singh had been "got at" or that Vincent Racaniello doesn't know what he's talking about, etc). That sort of thing doesn't serve the patient community well, and does our reputation no good, especially when it happens outside of the patient forums. That's what I'm saying is where (some) patients need to accept a portion of the blame for scientists' poor opinion of us.
 
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13,774
But I disagree that it stopped there. I read a lot of character assasination of any scientist whose paper didn't support the Lombardi/Mikovits paper, and I believe that was uncalled for, largely unfounded, and in some cases, absurd (suggesting that Daniel Peterson had gone over to the dark side or that Ilia Singh had been "got at" or that Vincent Racaniello doesn't know what he's talking about, etc). That sort of thing doesn't serve the patient community well, and does our reputation no good, especially when it happens outside of the patient forums. That's what I'm saying is where (some) patients need to accept a portion of the blame for scientists' poor opinion of us.

Yeah.. I think it was a really small minority though. Looking back, I wish I'd done more to speak up against it. I think that some of those taking this approach presented themselves as better informed than they were, and even though I thought that they were talking rubbish, I didn't really want to have to spend my time trawling through wikipedia's retrovirology articles in order to engage in debating them.

Lots of people spoke up on behalf of Singh, Peterson and Racaniello. I know I have. I got the impression that most people on this forum thought positively towards all three. Everyone gets some criticism - almost everyone deserves some criticism, so while I think some researchers were treated unfairly, I don't think it was as bad as you imply. Maybe I'm too thick skinned, and tolerant of attacks on others - or maybe I've just not noticed the worst threads/posts here. I have seen worse stuff on other sites around the internet, but tend to assume (perhaps unreasonably) that's just the same few people, posting the same poor arguments, based on the same misunderstandings.
 

floydguy

Senior Member
Messages
650
I agree that this community is much more knowledgeable than the general public and better able to evaluate scientific studies than most scientists would expect. I know I've had a crash course in virology, especially retrovirology. I already knew how to read a scientific paper, but I've branched out into new areas of science.

I also agree that critiquing the studies is not unreasonable. I'd go further and say that it's highly desireable. Debating whether the paper supports the conclusion is useful, too. All good.

But I disagree that it stopped there. I read a lot of character assasination of any scientist whose paper didn't support the Lombardi/Mikovits paper, and I believe that was uncalled for, largely unfounded, and in some cases, absurd (suggesting that Daniel Peterson had gone over to the dark side or that Ilia Singh had been "got at" or that Vincent Racaniello doesn't know what he's talking about, etc). That sort of thing doesn't serve the patient community well, and does our reputation no good, especially when it happens outside of the patient forums. That's what I'm saying is where (some) patients need to accept a portion of the blame for scientists' poor opinion of us.

I hear what you're saying but these are open forums and anybody can join. We don't even know the names and addresses of 95%+ of the people posting. The whole reason the other forum got started was so anybody could say what they wanted with no restraint. It's been stated several times shame on journalists or scientists who judge a population based on internet comments. Perhaps the whole research community should be judged on what I just read in the Economist:

http://www.economist.com/node/21528593

Tsk, tsk. They're all corrupt and should go to jail :eek:
 

ixchelkali

Senior Member
Messages
1,107
Location
Long Beach, CA
I think it is wrong to blame the patients.

Could this thread agree on who exactly of the non WPI researchers did a great job in their study design, isn't blighted by the VP62 contamination problem, gave equal weight to CFS and Prostate cancer when they had negative results and was fair in interviews and the media with no spin?

How many nominations will we have that everyone here is unanimous on?

Not fair, UKXMRV! Whan has everyone here ever been unanimous on ANYTHING? :D

I do think there were at least a couple of well designed studies. I don't quite understand about giving equal weight to CFS and prostate cancer, since they (at least, the ones I think we're talking about) were ME/CFS studies, not prostate cancer studies. But if I were to cite my nomination for a study that meets your criteria, I'm guessing you'd disagree.

I'd like to be clear that I'm not blaming the patients for our reputation. We have been depicted as crazies in the media; at scientific conferences by the likes of Stephen Straus, Reeves, Wessely, White, et al; in manipulated, pseudoscientific papers; and by innuendo on government websites. That is none of our doing and is undeserved.

All I'm saying is that some people in the research community may have been given a poor opinion of ME/CFS patients in general because some patients engaged in unfair character assasination against researchers whose findings differed from the WPI's, and that we need to accept that portion of blame which lies with us. We don't further our cause by being disrespectful to researchers who are making an honest effort to help us, just because we don't like their results. And I think the same thing is true of castigating Dr Mikovats if it turns out she was wrong; she may have made mistakes, but I believe she has made an honest effort to help us and that we should be appreciative of that. Sometimes very promising leads turn out to be dead ends; that doesn't mean that we don't want scientists to follow those leads. Bad-mouthing Judy Mikovits now is really no better than casting aspersions on Daniel Peterson or John Coffin or Ilia Singh was a few month ago.
 

citybug

Senior Member
Messages
538
Location
NY
Please see further detail of what happened in article just published. http://www.forums.phoenixrising.me/...-western-blots&p=209970&viewfull=1#post209970

Mikovits was the most senior researcher at WPI. I think they should have listened to her. They have been having internal conflicts. WPI was trying to be many things.

People on the other forum are rude. I often don't like it, but they have been on the right side of the science consistently. Maybe we need the rabble rousers. They keep at it and get the attention of scientists. Maybe this is our Act Up. We are a whole spectrum of all types of people spread over the world. Due to this illness many are very angry and very ill. Sometimes it is appropriate to act that way.
 

floydguy

Senior Member
Messages
650
Bad-mouthing Judy Mikovits now is really no better than casting aspersions on Daniel Peterson or John Coffin or Ilia Singh was a few month ago.

Yes, to some extent I agree. But Peterson is a little different from the others. He has been treating and committed to ME for decades. Coffin and Singh I thought made some ridiculous conclusions such as this is the end of XMRV, not necessary to study this anymore and by the way boys and girls don't take any anti-retrovirals. I would have been okay with the negative studies but then this crowd has to go on and make ridiculous statements that in my opinion are completely unjustified. Peterson deserves more slack because presumably he does have an interest in solving the mystery.