Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

Article: An End to An Era: The WPI Makes the Right Move: An Editorial

You can view the page at http://forums.phoenixrising.me/content.php?486-An-End-to-An-Era-The-WPI-Makes-the-Right-Move-An-Editorial

 

Wonders about all those poor people that put themselves on AZT and other insane anti-virals in an effort to kill the non existent virus.

I'll tell you about one:
My daughter is in complete remission after receiving what you call "insane" antivirals. I don't consider her a "poor person"; I consider her a fortunate young woman who got her life back instead of losing it to this disease as so many patients have.

She's not the only one. If you are genuinely wondering, and not just talking for the heck of it, you can find other stories just by doing some reading here at PR.

PS. Antivirals don't kill viruses. They stop them from replicating. You can learn more about antivirals here, as well.

 

If a researcher swore they would never approve a grant with Judy Mikovit's name on it that person should be reported to an ethics board.

Funny, the two researchers I mentioned that statement to had the same response. The stated very vehemently that such a position was extremely unethical and that patients should attempt to find out who this individual is and report them to the funding agency.

 

So Cort, who was the researcher that refused to approve any grants that involved Judy? Maybe you could do the right thing and turn them in?

 

Wonders about all those poor people that put themselves on AZT and other insane anti-virals in an effort to kill the non existent virus.

The antivirals i have taken were just a placebo effect, i feel better because its all in my mind, the improved lymphocyte sub set count and natural killer cell function is just coincidental, i could get the same effect from doing the PACE trial stuff, mmmmmmm??????????????????????????
People who know me from here can tell my statement is 100% sarcasm.

Im amazed that people can make these statements without apparently doing any research. There is plenty of empirical evidence out there that cfs/me has an infectious component, is it a 100% cure for everyone, well no, but it helps alot of people.

cheers!!!

 

Im amazed that people can make these statements without apparently doing any research. There is plenty of empirical evidence out there that cfs/me has an infectious component, is it a 100% cure for everyone, well no, but it helps alot of people.

Amazing, innit, how some people can know sooooo much without apparent research. I've had to do years of reading and listening and I still can't speak with the degree of certainty we hear from some recent newbies. It's been so very, very educational around here lately with all the wizards dropping in to instruct us.

 

The antivirals i have taken were just a placebo effect, i feel better because its all in my mind, the improved lymphocyte sub set count and natural killer cell function is just coincidental, i could get the same effect from doing the PACE trial stuff, mmmmmmm??????????????????????????
People who know me from here can tell my statement is 100% sarcasm.

Im amazed that people can make these statements without apparently doing any research. There is plenty of empirical evidence out there that cfs/me has an infectious component, is it a 100% cure for everyone, well no, but it helps alot of people.

cheers!!!

Yes, heaps, isn't it nice to know someone cares enough to show sympathy for poor you. Oh no wait, that wasn't sympathy, that was
wondering. In the neuter. One wonders. About the poor people.

I propose: wonder in private, and let grown adult ill people make informed decisions about their own bodies, over which they have ultimate sovereignty.

 

@ Ian, it occurs to me that according to the rules of the forum, it is not acceptable to mock or denigrate patients' treatment regimens.

You are entitled to your opinion that there is no need for anti-virals in the treatment of ME, but please don't declare to "the poor people" that their treatment choice is "insane." I suggest you moderate your own own post to reflect the conclusion you have come to without insulting the patients who have come to their decision perhaps at great pains and after lengthy deliberation.

I have not flagged your post for moderation though I do believe it qualifies as out of bounds. I leave it to you to reconsider and adjust accordingly.

 

It's obscene given that I lost friends in the early days of HIV/AIDS who didn't have access to AZT and other drugs. Since HIV/AIDS patients have had access to ARV drugs and the doses / combos have worked out I've lost no one else. HIV/AIDS patients fought to have the drugs released. There weren't too many sit-ins and demos asking for free dentistry.

Personal experience of actually seeing how ARV's would make Ian's ideas really weird. I wonder how much first hand experience he has in this. My HIV+ friends work and have a social life - I've got nothing.

 

So Cort, who was the researcher that refused to approve any grants that involved Judy? Maybe you could do the right thing and turn them in?

Yes, I think it's important that the NIH act on this. If a panel member is willing to blackball a scientist for being provocative, who knows what else they are blackballing for.

 

I can tell you about a third:

Since having being tested positive for EBV through DNA PCR RT Quali and not by any other ridiculous 'can't really tell if past or present infection' lab test method, I have been on insane AVs and ARVs, sometimes ones that are not indicated and sometimes, for the heck of it, more than I should be on at any one time.

I have had CFS for 15 years now, consistent twice a year flare up of hairy leucoplaky and days and days of continuous PEM just from walking round the block.

I have been on AVs for almost a year now and am back to working 20hr + weeks as well as being physically active over the summer about 2hrs 2 times a week. In fact so physically active that I was sidelined due to a physical injury, a first for me, and not because of an illness or fatigue issue.

For me, for those with virallly (CMV, EBV, HHV6) induced CFS, pple like Montoya and Lerner are right on the money.

 

A common, acceptable, and fairly accurate use of medications within the medical field, is diagnostics. Says a lot if people respond to ARV's.

 

und i didnt realize u were positive for EBV by PCR. so you definitely had an active infection, then. i never had that evidence..only stupid IgG antbodies :-/

 

Dr M in Ireland

I'm just back from the Tullamore Ireland conference at which Dr M spoke. She got a great reception even though some of the audience didn't know anything about XMRV.

This is the third time I've seen Dr M speak and she was in flying form, very relaxed and very open to questions. I'm happy to report that the she will be continuing with her research. A member of the audience was upset for some reason due to definitions of illness, nothing to do with Dr M or XMRV- the audience were perplexed as to why, and Dr M handled it very gently and diplomatically. If I ever doubted it, and I don't, this scientist definately has our back.

Reading between the lines it seems (to me) that she is taking all the flak in her considerable stride and is philosophical about it. And undeterred.

Paddy

 

I'm just back from the Tullamore Ireland conference at which Dr M spoke. She got a great reception even though some of the audience didn't know anything about XMRV.

This is the third time I've seen Dr M speak and she was in flying form, very relaxed and very open to questions. I'm happy to report that the she will be continuing with her research. A member of the audience was upset for some reason due to definitions of illness, nothing to do with Dr M or XMRV- the audience were perplexed as to why, and Dr M handled it very gently and diplomatically. If I ever doubted it, and I don't, this scientist definately has our back.

Reading between the lines it seems (to me) that she is taking all the flak in her considerable stride and is philosophical about it. And undeterred.

Paddy

Thanks for the firsthand report. There's nothing like the REAL THING. Great to hear!

 

Yes, Db, Ain't nothin' like the real thing! Thank Paddy

 

Marco, I totally agree!

I have no axe to grind either for or against Judy Mikowitz/WPI but would make a few observations.

The BWG results; the (now terminated) relationship between JM and her employer and JM's personal style and public pronouncements are three seperate issues. While each may have had an impact on the other we have no way of knowing that and the concatenation of the three for the purposes of constructing a narrative of 'why she had to go' is more typical of tabloid journalism or conspiracy theorising.

Cort states : "Dr. Mikovits aspersions against researchers resulted in so much anger in some quarters that a CFS researcher on a federal grant review reportedly refused to OK any grant that had anything to do with her."

I've seen many 'aspersions' cast during this whole affair not least Coffin's 'Joan of Arc' quip. Scientists can be a pretty bitchy and abrasive lot. But anger or dislike of a researcher's personal style or what they said about another researcher is NOT valid grounds to veto Federal grants. If such a veto actually occured this is most likely a flagrant breach of public procurement protocols.

Further : "Dr. Mikovits embrace of the Lo/Alter and Hanson findings was at odds with the rest of the retrovirology community which viewed them most likely to be contaminants."

If I recall correctly Lo/Alter embraced the Lombardi et al paper by stating that their results were highly supportive. Others in the retrovirology community were at pains to distance Lo/Alter's poly sequences from XMRV on the basis of their difference while simultaneously panning the lack of variability in XMRV as evidence of contamination. Given that the sequence that appeared in the Science paper we now know was Silverman's clone its all a little moot. Finally 'most likely contaminants' does not constitute proof.

While I can appreciate that Cort might feel the need to summarise or editorialise on behalf of 'the community' there remain too many unknown's at present to defintively state what happened; who did what to whom or whether JM's departure is good or bad for WPI or for ME/CFS patients.

A better use of time would have been a fuller (i.e. non-twitter) summary of the recent IACFS conference.


PS - While its easy to pick up on the 'worse than aids' or 'XMRV may be associated with autism' comments made in presentations, I don't see anything qualitatively different between these and exoratations that 'XMRV is dead - time to move on' or the numerous conclusions that XMRV was not associated with ME/CFS that appeared in print when the available evidence did not support these conclusions. Not to mention the inflammatory insinuations that ARV use was rife as were 'death threats' against researchers.

I certainly don't support unwarranted hyperbole but the hyperbole happened on all sides and I don't hear any other calls for heads to roll.

 

Thanks paddygirl - great to hear Dr M is carrying on her not inconsiderable work with ME in her stride and philosophic about recent events.

 

I'm just back from the Tullamore Ireland conference at which Dr M spoke. She got a great reception even though some of the audience didn't know anything about XMRV.

This is the third time I've seen Dr M speak and she was in flying form, very relaxed and very open to questions. I'm happy to report that the she will be continuing with her research. A member of the audience was upset for some reason due to definitions of illness, nothing to do with Dr M or XMRV- the audience were perplexed as to why, and Dr M handled it very gently and diplomatically. If I ever doubted it, and I don't, this scientist definately has our back.

Reading between the lines it seems (to me) that she is taking all the flak in her considerable stride and is philosophical about it. And undeterred.

Paddy

I am confused. I thought the theory had moved on from 'XMRV' to 'HGRVs'? Did Mikovits say anything about the BWG and how 'XMRV' was not discovered and perhaps offer an explanation? I guess though some journalist might cover this talk and we can read all about it in due course.

 

I don't believe in bad press. So what Mikovits did, XMRV, donated blood 'contamination' issues etc, I am grateful to her. It has raised the profile of ME/CFS considerably.

Do you know how big it is to get someone like Lipkin to work on CFS ?? It's Huge.

But when those contamination issues came up she should just have admitted to it instead of asking us to wait because another study was coming up to clarify the contamination mess. Well those studies never came and by that time she was beginning to look like all she wanted to do was lie to protect herself.

 

Undcvr

The studies did come but they were never published. That is where the bottleneck is.

Dr Mikovits did not lie to the UK group when an independant group took bloods here and then sent to 2 non-WPI labs in the USA. Results were returned to the 50 subjects and Dr Mikovits spoke about the results at a conference.

She found HGRV's in this group.

Dr Beiger presented the results of his own German trial (with a Virologist at a german university) at the Invest in ME conference but he has not published.

Dr Maureen Hanson presented her own results but once again has not published.

The contamination was caused by Dr Silverman and has nothing to do with the WPI.