• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Chicago Tribune: Manipulation alleged in paper linking virus

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I agree with Esther that we have to keep an open mind here. You cannot keep supporting an institute or a scientist just because you like what they are saying. Something major happened here and you can be pretty sure that the issue is not whether Judy was willing to share cell linings with other scientist. There had to be a bigger reason for the WPI to let her go allegedly with the NIH grant. What does the WPI have left now? Things don't add up and the fact that there are inquiring minds is only natural..

That's fine Nielk, but the current accusations about the western blot images have no relationship to Judy Mikovits being made redundant, as far as we know.

I am keeping an open mind, and that is why I am not accusing Judy Mikovits of fraud, based on a few meaningless accusations on the internet, where there is no evidence for such an accusation.

I prefer to look at the facts and the evidence.
 

LaurelW

Senior Member
Messages
643
Location
Utah
Trine has proved herself to be a terrible, biased journalist in the past, and I wouldn't believe a word she says without independent confirmation. She has an axe to grind, which is included in my definition of an unethical journalist.
 

floydguy

Senior Member
Messages
650
That's fine Nielk, but the current accusations about the western blot images have no relationship to Judy Mikovits being made redundant, as far as we know.

I am keeping an open mind, and that is why I am not accusing Judy Mikovits of fraud, based on a few meaningless accusations on the internet, where there is no evidence for such an accusation.

I prefer to look at the facts and the evidence.

How quaint :D
 

SOC

Senior Member
Messages
7,849
Rumors, rumors. Rumors can be true, but more often they are false, or misrepresentations at best. I could start some nasty rumors about most people here at PR by cherry-picking information I want out of context. It would be very wrong of me to do so, and I never would. Fortunately, if I couched my rumor with appalling language, juvenile humor, and filthy language, most people would ignore me.

Unfortunately, too many people don't ignore ERV when she does the same. Too bad they won't wait for the facts and the full picture and prefer to spread rumors, instead.
 

Nina

Senior Member
Messages
222
Rumors, rumors. Rumors can be true, but more often they are false, or misrepresentations at best. I could start some nasty rumors about most people here at PR by cherry-picking information I want out of context. It would be very wrong of me to do so, and I never would. Fortunately, if I couched my rumor with appalling language, juvenile humor, and filthy language, most people would ignore me.

Unfortunately, too many people don't ignore ERV when she does the same. Too bad they won't wait for the facts and the full picture and prefer to spread rumors, instead.

Great post SOC. I'm not sure why some are apparently so eager to roast well meaning people over the coals while applauding our most outspoken and nasty opponents.

Some facts would be nice for a change.
 

Wonko

Senior Member
Messages
1,467
Location
The other side.
Well, call me old fashioned. I prefer to know the facts before I accuse someone of fraud.
but thats a very wasteful, time comsuming and inefficient way of doing things, after all if these people werent guilty they wouldnt have been accused, or do you think there is a conspiracy going on?

and other such claptrap..... :D

If we are going to have internet kangeroo courts then let do it properly people.....

(not an attack on Bob's sentiment, more of an endorsement, it just seemed the ideal place to comment)

edit - the "you" above refers to the reader i.e. you, and is not aimed at Bob specifically.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
but thats a very wasteful, time comsuming and inefficient way of doing things, after all if these people werent guilty they wouldnt have been accused, or do you think there is a conspiracy going on?

and other such claptrap..... :D

If we are going to have internet kangeroo courts then let do it properly people.....

(not an attack on Bob's sentiment, more of an endorsement, it just seemed the ideal place to comment)

edit - the "you" above refers to the reader i.e. you, and is not aimed at Bob specifically.

Thanks Wonko, the clarifications are much appreciated... :D

But don't worry, I didn't misinterpret your post and take it personally this time, like I did last weekend :oops:
 

Cort

Phoenix Rising Founder
Amazing how a research trial with MULTIPLE, SERIOUS discrepancies in methodology; in which dangerous claims are made about efficacy and safety; which patients and supporters are extremely concerned about; and in which the medical journal who published the trial publicly attacks those concerned with the discrepancies; and in which the medical journal's ombudsman, who has a known conflict of interest because he co-authors with one of the trial authors, does not even answer complainants: is ignored, while an allegedly incorrect image from a conference presentation is treated as serious misconduct, enough to report in a large newspaper, before the facts have even been established.

I'm talking of course about the PACE trial.

I think Dr. Mikovits has scads of problems but well said :)
 

Cort

Phoenix Rising Founder
Trine has been a very harsh critic of Dr. Mikovits but she is not alone and neither is ERV - no matter how hostile a blogger she is. Its hard to get past that hostility but I wonder if we went back and looked I wonder how many times she's actually wrong on the facts.

This is in no way normal in the scientific field - the degree of controversy that occurred around Dr. Mikovits has raised is very unusual....

However this turns out I think she was unready for a position like Research Director of the WPI and in the end it's unfortunate for us that she was the one in charge. I agree with LJS - after talking to several researchers its clear the WPI's reputation is in tatters and what they need to do now is to try and rebuild it. Even if the WPI was wrong about XMRV there was no need for that to happen. It won't be easy to rebuild that and they probably won't get top notch researchers because the WPI is radioactive right now. Hopefully they can get a young really innovative researcher who is willing to rebuild them.
 

LJS

Luke
Messages
213
Location
East Coast, USA
It is odd to me that many of you are attacking Trine Tsouderos instead of acknowledging the much bigger problem at hand here. Sure her articles do not show CFS in the best of light but that is what the scientific community at large thinks about CFS and patients are not helping that by making illogical vile comments on every article. The more Dr. Mikovits made personal attacks on others that digressed with her instead of reaching out to them the more it polarized the scientific community against CFS and XMRV. Disagreement and debate in science is great, attacking others because they disagree with you in a whole different story. I have had major issue with the way the WPI and Mikovits have been handling XMRV for sometime now and I knew it would come to a breaking point, but I didn't think it would be this bad.

I am happy Trine used restraint and picked the quote she did from this forum, it could be way worse if she used some of the other comments. If you just look over at some other science blogs, that I will not name, you can see many scientist think CFS is a joke in large part because of the actions and comments of fellow CFS patients and Mikovits. They have gone to CFS forums to check it out and see the absolutely insane, illogical, and bizarre comments and assume all people with CFS are like that. If I did not know anything about CFS or did not have it myself and saw some of the comments by CFS patients I would have a hard time not thinking there is something mentally wrong with them.
 

Enid

Senior Member
Messages
3,309
Location
UK
And may she stay colourful - just cannot believe Dr Mikovits was or is out to dupe (whatever happened at the WPI). One of so few researchers dedicated to finding answers for ME.
 
Messages
1,446
LJS wrote: "I am happy Trine used restraint and picked the quote she did from this forum"

I'm not happy witht he quote that Trine chose to use - it was representative of only a percentage of views - it was very disengenous of her to use it to 'represent' ME sufferers views on forums - but of course - it supported Trine's agenda.
.
I can't believe what I am reading here in favour of ERV and Trine Tsouderos and their recent publications.

Staggering.
.
Here in Britain we recognise media manipulation when we see it.
 

floydguy

Senior Member
Messages
650
It is odd to me that many of you are attacking Trine Tsouderos instead of acknowledging the much bigger problem at hand here. Sure her articles do not show CFS in the best of light but that is what the scientific community at large thinks about CFS and patients are not helping that by making illogical vile comments on every article. The more Dr. Mikovits made personal attacks on others that digressed with her instead of reaching out to them the more it polarized the scientific community against CFS and XMRV. Disagreement and debate in science is great, attacking others because they disagree with you in a whole different story. I have had major issue with the way the WPI and Mikovits have been handling XMRV for sometime now and I knew it would come to a breaking point, but I didn't think it would be this bad.

I am happy Trine used restraint and picked the quote she did from this forum, it could be way worse if she used some of the other comments. If you just look over at some other science blogs, that I will not name, you can see many scientist think CFS is a joke in large part because of the actions and comments of fellow CFS patients and Mikovits. They have gone to CFS forums to check it out and see the absolutely insane, illogical, and bizarre comments and assume all people with CFS are like that. If I did not know anything about CFS or did not have it myself and saw some of the comments by CFS patients I would have a hard time not thinking there is something mentally wrong with them.

Yes, sadly the scientific community is as prone to innuendo, rumors, believing what they read on the internet, character assassination, greed, etc. as much as the great unwashed masses. It's truly a discouraging state of affairs when so called objective scientists are unable to place a call to Komaroff, Klimas or others, who have been doing ME research for decades, and get a scientific run down of the disease. Apparently, they call Trine. How disappointing.

You can't be serious about CFS now being a joke. It's been a joke since the CDC changed the name from ME to CFS in the 80s. The only good thing about being in the gutter is you can't get much lower.

You might be correct about some of the comments on these boards, blogs, etc. but many of the insane, illogical, bizarre comments are coming from so-called scientists. They haven't exactly proved themselves to be a very impressive lot either.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
If you just look over at some other science blogs, that I will not name, you can see many scientist think CFS is a joke in large part because of the actions and comments of fellow CFS patients and Mikovits. They have gone to CFS forums to check it out and see the absolutely insane, illogical, and bizarre comments and assume all people with CFS are like that. If I did not know anything about CFS or did not have it myself and saw some of the comments by CFS patients I would have a hard time not thinking there is something mentally wrong with them.

But anyone who dismisses ME/CFS as a joke, just because of the postings on an online forum, is surely not a person worthy of respect?
It would really suggest a severe lack of credibility, intelligence, insight and wisdom, wouldn't it?
And they would hardly be worthy of the description: "scientist".

This has always been the problem with ME/CFS - It's been treated as a joke since 1988.
This state of affairs is a failing of the science and medical communities, not the patient community.
But I suppose it's easier to blame the patients.
 

Cort

Phoenix Rising Founder
.
Cort, whatever the issues with WPI/Judy Mikovits, I really cannot believe that you are being so considerate of such persons as ERV and Trine Tsouderos. Their postings and publicatins have vilified the ME community over years - inexcusably.

I don't recall Trine villifying the CFS community - what I remember about her articles are her taking Dr. Mikovits to task again and again - and often using Dr. Mikovits own words to do it.

I think we really miss how really controversial a figure Dr. Mikovits is in the research community

I don't know about ERV - you may be right - but I wasn't referring to her protrayal of the CFS community - which from memory is pretty poor - although my guess is that she was referring to the more aggressive members of the community. . I wonder when you look at the facts regarding XMRV how wrong she's going to turn out to be. She may have been right on all the factual aspects of XMRV.
 

Enid

Senior Member
Messages
3,309
Location
UK
Thanks Firestormm - whatever goes on at WPI (what a mess) - I know very well from my 11 years it is Viral however difficult to pin down. Dr Mikovits knows too. That's all I need to know despite the absolute nastiness going on at present. XMRV or HGRVS - let the dedicated scientists alone to continue quietly (away from the media and obvious interpersonal dislikes) continue their research unobstructed by all this).