Dr. Lombardi is Research Director

[omegaman]

I don't think my opinions should really be a surprise. I've been rather open about this for a long time and I do feel quite strongly about it. Again, it was Dr. Mikovits who said she was changing positions because the Research Director position had not worked out.

I don't think she said it did not work out. If finding XMRV in patients with four different methods and getting CFS and XMRV published in Science and all the attention it has gotten our disease is something not working out then I'd say I hope things keep not working out.

THe situation have evolved and it's time to focus on treatment. Where she can be most effective and help us the most has evolved. Certainly that does not impune her past roll as being any kind of failure. In fact it has been the biggest success the ME/CFS community has maybe ever had in the scientific arena.

 

[Cort]

I think it's basic to research that people understand the rules of the game so their research doesn't get steamrolled for no reason. I feel that wise researchers know how to play the system. I must say, however, that if the NIH is denying money to Mikovits for not playing the game right, then they are being petty and unprofessional. They are denying important research just to get back at someone who ruffled their feathers.

Anyway, I think this is a smart move for Mikovits. I don't think pharmaceutical companies get their feelings hurt so easily, and Mikovits can focus on the translational aspects now.

There's no disagreement about that. I don't know why they can't get grants.....it could be several reason...there could be personality conflicts...maybe the grant applications are missing something....maybe they don't like the WPI....I really don't know. All we know is that they're having trouble getting grants and publishing papers - and to be a successful research institute you have to do both.

There's no denying that CFS is a tough field and that you've probably got to be a bit better than everyone else to get ahead. Dr. Montoya has begun his own much smaller 'Institute' that is focused on CFS. We'll see how he does getting grants and all. HE does have the substantial advantage of working at STanford to help him out with that .

 

[Bob]

I don't think she said it did not work out. If finding XMRV in patients with four different methods and getting CFS and XMRV published in Science and all the attention it has gotten our disease is something not working out then I'd say I hope things keep not working out.

THe situation have evolved and it's time to focus on treatment. Where she can be most effective and help us the most has evolved. Certainly that does not impune her past roll as being any kind of failure. In fact it has been the biggest success the ME/CFS community has maybe ever had in the scientific arena.

I agree with you omegaman, except that, according to Mindy's blog, the WPI did say that Judy's old position was not currently working for the WPI, which they say is due to the politics.

 

[Cort]

I think it's basic to research that people understand the rules of the game so their research doesn't get steamrolled for no reason. I feel that wise researchers know how to play the system. I must say, however, that if the NIH is denying money to Mikovits for not playing the game right, then they are being petty and unprofessional. They are denying important research just to get back at someone who ruffled their feathers.

Anyway, I think this is a smart move for Mikovits. I don't think pharmaceutical companies get their feelings hurt so easily, and Mikovits can focus on the translational aspects now.

THis is not to say that Dr. Mikovits is not an excellent fit for her new job. As I pointed out she has lots of experience in this area. She is a very good fit for this job.

Dr. Mikovits has a long history in treatment research. She directed the Lab of Antiviral Drug Mechanisms (LADM) at the NCI which developed creens for treatments for AIDS and AIDS-associated malignancies (Kaposi’s sarcoma) and served as Chief Scientific Officer and VP of Drug Discovery at Epigenx Biosciences, where she developed cell and array-based methylation assays for drug discovery and diagnostic development. She has co-authored more than 40 papers over her career.

 

[Cort]

I don't think she said it did not work out. If finding XMRV in patients with four different methods and getting CFS and XMRV published in Science and all the attention it has gotten our disease is something not working out then I'd say I hope things keep not working out.

THe situation have evolved and it's time to focus on treatment. Where she can be most effective and help us the most has evolved. Certainly that does not impune her past roll as being any kind of failure. In fact it has been the biggest success the ME/CFS community has maybe ever had in the scientific arena.

Yes it has been the biggest success the ME/CFS community has ever had - by far...It's got the research community looking at CFS in a new way....

I hate to be so negative but I disagree about that it's time to move onto treatment. Everything is up in the air right now and XMRV's fate will be decided over the next six months. Now is the time to focus solely on proving that XMRV is there. I imagine that DR. Mikovits will continue to be heavily involved in that end but the WPI is saying to the public that, as we try to bring XMRV home, Dr. Mikovits will not be leading that fight.

 

[ixchelkali]

She just ended up being not a good fit for that position. Successful Research Institutes do things in a certain way...they are objective, they are cautious, they re polite.....they do the things they need to do to be successful as a Research Institute. Something has gone wrong..The WPI hasn't been able to get grants at a time when they should have been pouring in - and when other Institutes were getting them and studies are continuing to pour out.

I think she let it get personal and that hurt them and us badly. They were a new lab with a controversial finding about a controversial disease; they had a big target on their back - if they had kept their head down and been humble - all the while working furiously behind the scenes to prove their finding - that would have helped alot - and I think they would have gotten help....

I have to say, I don't think this garbage is happening because Judy Mikovits is a pushy broad. If she had been equally insistent and assertive, but had been talking about XMRV in prostate cancer, I think it would have been a whole different story. Besides, look at the timing: those first negative studies came pouring in within WEEKS of the Lombardi, et al study. It wasn't Judy Mikovits they found threatening, it was the idea that the WPI had found evidence of a biological cause of ME/CFS. That was going to leave a number of people with egg on their faces, people whose professional reputation and lucrative positions are threatened. At that point, they didn't know Judy Mikovits from Adam's odd ox, they were just scrambling to shoot down the XMRV study any way they could.

Sure, since then there have been some mud-slinging fights, but I really don't think the WPI is having trouble getting NIH funding because Judy Mikovits shot her mouth off. And I don't think they're having trouble getting published because of her comments in the press. Even scientific journals like to get increased readership, and this is a big story.

I know scientists are human and can be petty at times, but I really think there has to be more to this story. Otherwise, it just doesn't add up.

 

[fingers2022]

I think it's basic to research that people understand the rules of the game so their research doesn't get steamrolled for no reason. I feel that wise researchers know how to play the system. I must say, however, that if the NIH is denying money to Mikovits for not playing the game right, then they are being petty and unprofessional. They are denying important research just to get back at someone who ruffled their feathers.

Anyway, I think this is a smart move for Mikovits. I don't think pharmaceutical companies get their feelings hurt so easily, and Mikovits can focus on the translational aspects now.

For "wise" read "smart".......or if you're cynical, read "corrupt".
Wisdom is a rare commodity, Andrew, please don't trivialise it.

This is clearly a very complex game. Unfortunately, the pawns in the game don't see the fun. Everyone has to choose - play chess, or throw the board away and play hard. Hey, Judy (don't make it bad, take a sad song and make it better), as far as I'm concerned 20 years of chess is getting rather dull.

 

[ixchelkali]

I think where I stand on XMRV is pretty clear too. If I had to bet I would not bet on it but I do recognize that the while most of the evidence is not good right now...that the negative evidence is mostly circumstantial and the real test will come with the BWG and Levy and SIngh and Lipkin and other studies that come out this summer. Those will tell the tale - and everything could turn around.

I understand that you're saying we'll just have to wait and see, but I'm curious: when you say you wouldn't bet on XMRV, do you mean you think it is a contaminent, or that you think it is infecting some patients but isn't causing ME/CFS?

 

[fingers2022]

I imagine that DR. Mikovits will continue to be heavily involved in that end but the WPI is saying to the public that, as we try to bring XMRV home, Dr. Mikovits will not be leading that fight.

Is that what they said, Cort, or is Judy just in a different job? Maybe she's just not head of Marketing any more? Who cares who is head of Marketing anyway, they are usually a waste of space in my experience?

 

[fingers2022]

You broke my heart and crushed all my dreams in the conversations I had with you

...and that is not the dream that ME is simply caused by XMRV and can be simply treated by ARV's, it is the dream that we can all get our heads together and find the true cause and effective solutions. If this is naive, then fine, game on (not chess please) , war on.

 

[toddm1960]

AMEN BROTHER..... Let's start a pool of when Judy will get a positive paper published:Sign giggle: Will we see one in 2011?

 

[Bob]

I hate to be so negative but I disagree about that it's time to move onto treatment. Everything is up in the air right now and XMRV's fate will be decided over the next six months. Now is the time to focus solely on proving that XMRV is there.

I disagree... I think that if pharma companies want to pay to get small scale treatment trials started, and if antiretrovirals then prove to be effective in treating ME, then that will be beneficial for us. If the trials are successful then it will also help to prove the XMRV-CFS connection, if there is one.

Now is the time to focus solely on proving that XMRV is there. I imagine that DR. Mikovits will continue to be heavily involved in that end but the WPI is saying to the public that, as we try to bring XMRV home, Dr. Mikovits will not be leading that fight.

That's not how I interpreted their announcement... I think that Judy is continuing to lead the fight, but she is doing it in another way... She's going to be working with other researchers/agencies/companies to take the translational research forwards... So this is taking a step forwards in her XMRV research, not backwards.

 

[Andrew]

THis is not to say that Dr. Mikovits is not an excellent fit for her new job. As I pointed out she has lots of experience in this area. She is a very good fit for this job.

I'd go so far as to say she was a good fit for her previous position. Even though I acknowledge that she probably ruffled feathers, I think she accomplished a lot in a very short time and with very little money. But now The Empire has struck back, and it's time for a new strategy.

BTW, I hope my earlier statement is not taken to be a criticism of Mikovits. I was speaking generally about the field of science and trying to put some balance onto things. Too often the focus is on the reality of the politics, and not the inherent pettiness of the system. I think Mikovits is among the best and the brightest.

 

[Cort]

I disagree... I think that if pharma companies want to pay to get small scale treatment trials started, and if antiretrovirals then prove to be effective in treating ME, then that will be beneficial for us. If the trials are successful then it will also help to prove the XMRV-CFS connection, if there is one.

I guess one question is why, with all this contamination talk swirling, they would be willing to do that now rather than before? I would be surprised but who knows? - I think there was some talk about Dr. Mikovits announcing something in April...maybe they have found something so big that it will lead to treatment trials and that is why she is moving to the new position. She is certainly experienced in that aspect of medical research.

Her new job is translating research into treatment possibilities

Mikovits remains an integral part of the WPI as she focuses her considerable talents assisting its strategic partners and collaborators in the translation of the most current research. She will engage in activities which support and promote the development of more effective treatments for all patients with neuro‐immune diseases.

 

[Cort]

The conversations with them have made me very depressed and I can not cope.
the lowest point for me is when professor Towers said to me that Dr Judy Mikovits is no hero and has destroyed MECFS forever.
that was one of the low points but to be honest being told by Dr Myra McClure she believed im not XMRV positive and that its safe to have a baby without it getting XMRV from me is also another low point.

If he said that - he's certainly wrong! CFS is stronger in the research community than it has been in quite awhile because of XMRV. We have the Workshop coming up that looks like it will be very strong and there's Dr. Montoya and Light and Dr. Lerner and Klimas (Klimas got a grant approved this year...)

I can't put it too strongly but that if XMRV does not work out it will a blow but it is not the end of hope...There are many interesting research possibilities and there is more interest in CFS than before. Just look at the Lipkin/Montoya pathogen study...if that really works out - if it shows pathogens are in a significant percentage of people with ME/CFS - then that is a huge springboard for research...

 

[*GG*]

But Judy Mikovits & the WPI find XMRV in ME/CFS patients and it brings an avalanche down on their heads. Sure, some real researchers try to go ahead with normal scientific process, but that's almost lost in the rush to discredit Judy Mikovits. Now she can't get published, she can't get funded, she can't mentor students. It sends a pretty strong message to any young researchers who might think of doing this kind of research: if you find even a potential biological cause of ME/CFS, we will bury you. Don't go there, it's professional suicide.

I wonder how many "young researchers" still really know anything about ME/CFS and the controversy? I kind of think the world at large barely knows anything about what is going on here, so I don't think they could be discouraged.

GG

 

[Riley]

Village, I have been moved and disturbed by your recent posts, and I can tell that you are going through a dark time. Please allow me to offer to you and others why am I am very optimistic about XMRV. I am too ill to use the computer for any length of time, therefore I cannot provide links for the following, but hopefully others can.

They say that the darkest hour is before the dawn, and I believe we are in that darkest hour, but here is why I believe that XMRV will work out.

1. Dr Mikovits’ comments at Santa Rosa that she believes “the politics will go away shortly.”

2. Another person on the forum reported a few weeks ago that Dr. Demerleir told him that there is something coming out in a couple of months that will end the contamination debate, but that he could not provide details because of a non disclosure agreement.

3. The report from XMRVGA on Dr. Mikovits’ recent talk in Canada. They said that some new “jaw dropping” directions were announced and that the research is progressing nicely. They too said they could not release details at this time.

4. Some comments that Dr. Lo and Dr. Alter made during the NIH videocast abou their research, which make it seem that contamination is highly unlikely. Also , the general confidence that they display in their results.

5. The recent letter from Dr. Lapp which states that Chronix found XMRV, possibly integrated into human DNA with new technology.

6. The escalating coverage in the Wall Street Journal. I cannot help but think that ADM has gotten wind of whatever big announcement is coming, and that she and the Journal are now laying the groundwork for what is sure to be a massive story. Think about it why all of the full page articles about CFS now? Why run that article about Mangan and NIH campaign now? That stuff happened six months ago, and the article read like it was written six months ago.

7. The press release being discussed in this thread. I take this not as a demotion of Dr. Mikovits or some sort of capitulation by the WPI, but as a sign that they have a trump card on the way and are therefore ready to move in a new direction (treatment) with Dr. Mikovits at the helm. I think that this announcement will come in May and coincide with the opening of the WPI clinic.

8. Also related to this press release, the fact that drug companies seem very interested in pursuing treatment avenues.

I would also like to add that the astounding arrogance displayed by the UK doctors that you mention only further adds to my belief that they are wrong and due for a hard fall.

So don’t lose hope!

 

[Bob]

That's really helpful Riley... Thank you for listing those points.

I share your optimism, and I agree that Village should not lose hope, or be downhearted by comments from a very small number of scientists.

(I'm sorry you've had such a negative experience Kate. Please always remember you are with friends here, who totally understand your suffering and your hopes.)

There's also the announcement that Cort says he thinks that the WPI are going to make in April... That might be related to some of the points that you've noted Riley.

And I think that the NIH State of the Knowledge CFS conference should be extremely interesting, with possibly a few big announcements.

I agree with Riley that there's no reason to lose hope at this stage.

This was always going to be a long, drawn out process, and I know it is very hard for many people to live through.

Personally, I think we are at the most hopeful time in the history of CFS ever.

 

[ixchelkali]

Village, I have been moved and disturbed by your recent posts, and I can tell that you are going through a dark time. Please allow me to offer to you and others why am I am very optimistic about XMRV. I am too ill to use the computer for any length of time, therefore I cannot provide links for the following, but hopefully others can.

They say that the darkest hour is before the dawn, and I believe we are in that darkest hour, but here is why I believe that XMRV will work out.

1. Dr Mikovits’ comments at Santa Rosa that she believes “the politics will go away shortly.”

2. Another person on the forum reported a few weeks ago that Dr. Demerleir told him that there is something coming out in a couple of months that will end the contamination debate, but that he could not provide details because of a non disclosure agreement.

3. The report from XMRVGA on Dr. Mikovits’ recent talk in Canada. They said that some new “jaw dropping” directions were announced and that the research is progressing nicely. They too said they could not release details at this time.

4. Some comments that Dr. Lo and Dr. Alter made during the NIH videocast abou their research, which make it seem that contamination is highly unlikely. Also , the general confidence that they display in their results.

5. The recent letter from Dr. Lapp which states that Chronix found XMRV, possibly integrated into human DNA with new technology.

6. The escalating coverage in the Wall Street Journal. I cannot help but think that ADM has gotten wind of whatever big announcement is coming, and that she and the Journal are now laying the groundwork for what is sure to be a massive story. Think about it why all of the full page articles about CFS now? Why run that article about Mangan and NIH campaign now? That stuff happened six months ago, and the article read like it was written six months ago.

7. The press release being discussed in this thread. I take this not as a demotion of Dr. Mikovits or some sort of capitulation by the WPI, but as a sign that they have a trump card on the way and are therefore ready to move in a new direction (treatment) with Dr. Mikovits at the helm. I think that this announcement will come in May and coincide with the opening of the WPI clinic.

8. Also related to this press release, the fact that drug companies seem very interested in pursuing treatment avenues.

I would also like to add that the astounding arrogance displayed by the UK doctors that you mention only further adds to my belief that they are wrong and due for a hard fall.

So don’t lose hope!

Thank you for this. It was nice to have all these reasons for hope laid out together. Also nice of you to use some of your limited energy to put it together. Just the fact that you were reaching out to Village is another reason for hope. We're in this together, and even within our limitations there's room for kindness. You've reminded me of that.

 

[WillowJ]

The conversations with them have made me very depressed, Its hard to cope.
Kate.

Dear Kate,

I'm sorry to hear they were so very unkind to you. Sending you a hug. Please remember we are always here for you.

If you want to try talking to a researcher who will undoubtedly be kind (I realize you had a totally different objective contacting the Wessely school sharks, but I thought this might be helpful all the same), I recommend Dr. Lenny Jason, Dr. Judy Mikovits, Dr. Nancy Klimas, Dr. Andreas Kogelnik, or Staci Stevens. I believe they all answer email. There's also Rich VanK right here on the forum. Let me know if you need help contacting anyone.

best,
WillowJ