Montoya's Talk At ILADS by C. Cairns

[shannah]

from Chris Cairns:

Sunday, October 17, 2010
ILADS conference 2010 - Dr. Jose Montoya
Dr. Jose Montoya of Stanford gave a lecture at the ILADS conference entitled Viral Induced CFS the Stanford Perspective.

Dr. Montoya has not been seen on the ME/CFS lecture circuit since the June 2008 HHV-6 conference. Dr. Montoya was the main squeeze at that conference when he gave a much anticipated preliminary report on the Roche-sponsored Valcyte trial of 30 patients - 20 treated patients and 10 controls. The report delivered that day was a great disappointment to many of the ME/CFS patients as the trial failed to confirm the previously very positive reports from several smaller pilot studies. In the Roche study preliminary report, fatigue improvement came up short. However the majority of treated patients did have significant cognitive improvement. Dr. Montoya indicated that much more analysis of the results was necessary. As far as the Patient Advocate knows, no update of this study was presented until this ILADS lecture. Through a complex statistical analysis Dr. Montoya seemed to establish that Valcyte treated patients improved in fatigue categories in several categories compared to placebo. Cognitive improvement was also noted.

In these studies Dr. Montoya used elevated IgG antibodies to EBV and HHV-6 as diagnostic markers and also as measures of improvement. The hope was that these elevated antibodies would recede with treatment, and that they could be read.
Dr. Montoya presented data of movement, up or down in a predictable fashion, of neutrophils and monocytes with Valcyte treatment in various patient populations.

In a bit of a surprise, Dr. Montoya reported on more recent efforts at Stanford to develop a cytokine profile to be used as both a diagnostic treatment marker and to measure treatment improvement. Dr. Montoya thinks that he is close to publishing this work, but he wants to make sure that he gets it right. Dr. Montoya indicated that he was interested to make his raw data available on the Internet (to pre-screened individuals). In other words, Dr. Montoya is willing to share information.

Two other groups, one with Kilmas and one at the WPI, are working on cytokine/chemokine marker/trackers. The Patient Advocate believes that immunological markers for tracking treatment progress will be published in the coming months. Whether these separate efforts have any continuity will be seen. Whether there has been any cooperatation between these three groups is unknown. If not, the Patient Advocate wonders why not?

The Patient Advocate asked Dr. Montoya if he knew Dr. Dale Guyer -and Dr. Montoya said no. The PA asked Dr. Montoya if he worked with Dr. Brewer and he said no. The Patient Advocate thinks this is going to change. Dr. Montoya works at Stanford in virtual isolation. His colleagues at Stanford have never been overly excited about his work in ME/CFS. Recently it has been reported that he is working with Dr. Lerner. Various people are reaching out to Dr. Montoya to get him more tightly involved in future diagnostics and treatment of ME/CFS. This doctor is one of the very best, a real human being. If Dr. Montoya can develop his own cytokine signature, he will most likely begin trials of the most advanced treatment ideas. Dr Montoya is a courageous and humanistic doctor who wants to help patients.

The PA asked Dr. Montoya if he were testing his patients for XMRV. He said no, but that Stanford was developing its own test. The PA asked him why didnt he just use the one from VIPdx? To the Patient Advocate this seems the most logical solution - to lease the test from VIPdx. Why reinvent the wheel?

The Patient Advocate assumes Dr. Montoyas work will be published. It was terrific to see this very sympathetic and serious doctor/researcher giving a public lecture again. The Patient Advocate looks forward to a greater role for Dr. Montoya in future diagnostics and treatment. We need this man to take a larger role.

http://cfspatientadvocate.blogspot.com/2010/10/dr.html

 

[CBS]

Various people are reaching out to Dr. Montoya to get him more tightly involved in future diagnostics and treatment of ME/CFS. This doctor is one of the very best, a real human being. If Dr. Montoya can develop his own cytokine signature, he will most likely begin trials of the most advanced treatment ideas. Dr Montoya is a courageous and humanistic doctor who wants to help patients.

It was terrific to see this very sympathetic and serious doctor/researcher giving a public lecture again. The Patient Advocate looks forward to a greater role for Dr. Montoya in future diagnostics and treatment. We need this man to take a larger role.

As a patient of Dr. Montoya's, I could not agree more with the characterization of him as courageous, humanistic, sympathetic and serious. I also know that he is a soft spoken, humble and somewhat conservative in his conclusions and treatment.

At a recent visit, he mentioned the effects of elevated cytokines and the possible role of "other infectious agents (aside from herpes viruses)" for some CFS patients and the possibility of treatments/trials beyond anti-virals.

It will be interesting to see where this leads him.

 

[heapsreal]

interesting, ive been waiting for more info from this guy. Also glad he's working with lerner as both on a similar path but 2 different sets of eyes to see problems with, i think these 2 guys can do good things, especially us that are in a herpes sub group.

cheers!!

 

[August59]

I can see the PA's a reasoning for Dr. Montoya using VIPx XMRV test. From a different perspective wouldn't it be a good thing if Dr. Montoya and his team did create their own test? Wouldn't they have to be able to isolate the virus and also have no problem whatsoever in finding XMRV to be able to develop a test? It's probably a "titer" test that will be able to quantify the results. Does a "titer" always check antibodies?

I'm just thinking through this, but thats not saying much, but Dr. Montoya being associated with Stanford must have immense access to one of the elite medical laborartories in the country, plus a numerous amount of graduate students. I can certainly see them developing their own test. This still seems to me like a good thing.

I know much less about Dr. Montoya than the PA and CBS, but I have always thought he would end up being one of our biggest allies. It appeared to me, when the first Valcyte study was published, that he was willing to "step out there" for ME/CFS and HHV-6 patients.

I do wish that he, Klimas and WPI would collaberate some on the cytokine information, which it does appear like he is willing to do.

 

[Navid]

Uh... seems kind of an unusual choice for a non-tenured Stanford infectious diseases professor to present an unpublished study at what is considered a quack conference. I don't think it's considered legit by any scientific body, especially academic infectious diseases departments.

hi cf:

well this is an interesting angle to look at it: what do you think? will montoya be departing stanford and starting some work on his own? or are ilad and the docs who do treat chronic lyme beginning to be seen as legitimate.

montoya believes strongly that cfids is virally or bacterially (or perhaps, maybe retrovirally) caused and also is open to the xmrv theory...is stanford coming down this road with him or will there be a fork in the road and they part ways?

i hope it's: that stanford is beginning to see the true light of CFIDs as a true biophysical disease...but i'm an optimist.

i know montoya sincerely cares abt cfids patients and wants to help them. he believes in the reality of the disease and how life damaging it truly is.

since his clinic just moved into a bigger space, i was thinking perhaps they were going to expand their work with cfid's pts....a very nice space ...hmmmm?!?!?

so many ways to interpret all this....yet another cfids mystery

 

[CBS]

since his clinic just moved into a bigger space, i was thinking perhaps they were going to expand their work with cfid's pts....but the space is in the basement of a bldg....a very nice space though...hmmmm?!?!?

Hi Shebacat,

Just a quick comment on the Stanford's new ID and Geographic Disease Dept. location. Unless I went to the wrong office and Dr. Montoya has a frighteningly similar twin, the dept is on the 2nd floor of Blake Wilbur (and the ID administrative offices have remained in Boswell).

As I said before, it is quite clear that Dr. Montoya cares about his patients and believes that ME/CFS is infectious in origin.

 

[Navid]

oooops ur are correct cbs...i corrected my post : )

2nd floor it is!

 

[Timaca]

charityfundraiser~ It is true that ILADS and the IDSA do not agree on the diagnosis or treatment of Lyme disease. That does not make either one of them a quack group, or the ILADS conference a quack conference. I think it is remarkable that the ILADS doctors are willing to consider what other infectious pathogens may be making their patients ill. And quite wonderful that an IDSA doctor (Dr. Montoya) is willing to share what he knows about viruses with these Lyme doctors. To have any doctor display an open mind with regard to the CFS illness is remarkable. To see bridges being built between the Lyme world and the viral world is a good thing.

I have seen other doctors associated with major medical universities present unpublished work at conferences. I don't know the protocol, as I'm not a researcher, but in my observations it is done, but written information is not usually provided.

Shebacat~ Dr. Montoya has been at Stanford for 20 years and is heavily involved in research there. I doubt he would think of leaving. He is making a huge difference where he is.

I don't know that the "Lyme literate" doctors are being seen as legitimate with mainstream doctors, but I do know of some ID doctors that believe there may be an infectious association in a subset of patients with CFS. Whether that infectious pathogen is Borrelia burdorferi (the causative agent of Lyme disease), or XMRV, or Coxsackie B, or HHV-6 or EBV or a combination of pathogens remains to be seen. What is nice is that some doctors (like Dr. Montoya) are actively seeking answers to that question. He is doing that primarily with the help of private donations. So, if anyone wants to help out financially with what he is doing you can contact me privately and I can explain how donations can be made to support his CFS work.

They are hoping to expand the CFS clinic in the near future. The new clinic location is the second floor of the Blake Wilbur building: http://stanfordhospital.org/directions/maps/BW.html

As CBS said, Dr. Montoya does care a great deal about CFS patients, and is working very hard to find answers. He is a bright, caring, dedicated and hard working doctor. He is also a great researcher, authoring or co-authoring over 50 publications in peer reviewed journals. I am so very grateful he is doing the work he is doing. He, like other CFS doctors, need our encouragement and financial support. It's hard work being a trailblazer, and that is what Dr. Montoya is.

Best, Timaca

 

[CBS]

Hi Timica,

Thanks for the post. After my note, I wanted to expand but you beat me to it. I too think that the move was forwards not backwards.

I would simply add that Dr. M. is also the Director of the Toxoplasmosis National Reference Laboratory at Stanford. If you check out his publications on Medline you'll see that he's published far more on "Toxo" than he has on CFS. He has told me about the plans to expand the CFS Clinic but I don't have details and I wasn't sure if those plans were public.

 

[Timaca]

Hi CBS~ Yes, Dr. Montoya is the director of the National Reference Lab for the Diagnosis and Management of Toxoplasmosis in the U.S. See: http://www.pamf.org/serology/clinicianguide.html
He is also the founder of the Immunocompromised Host service at Stanford: http://iti.stanford.edu/patient_care/infectious_diseases.html

Charityfundraiser~ I'm not sure what you mean about "he has never even been able to give a referral to other Stanford specialists." I am a patient of his, and I have been referred to another doctor at Stanford by him. So has my husband.

Admittedly, the research paper fell behind schedule. He was not having trouble getting it published. It was delayed for other reasons.

He is by no means giving up on "real research". Far from it. If you are interested in the research he is doing on behalf of CFS patients, you can contact me privately for further information.

Best, Timaca

 

[Timaca]

Charityfundraiser~

For the record, other IDSA doctors have spoken at an ILADS meeting. Paul Auerwater from John Hopkins spoke a couple of years ago. http://www.hopkinsmedicine.org/gim/faculty/auwaerter.html When a doctor shares at a meeting, they are giving their perspective on their topic. It doesn't mean anything more or anything less than that. I heard Dr. Auerwater speak, and I heard Dr. Montoya speak. Information was shared, and bridges were built so that we, the patients, could ultimately benefit. I personally am glad that Dr. Montoya took the time to share his research so the Lyme doctors could be aware that viruses may be part of their patients' illness.

I had an ILADS doctor for a number of years. So did a friend of mine. He was totally awesome, and very thorough. And he improved my level of well being. Was he looking for viruses in his patients? No. He was concentrating on tick borne diseases. Did he listen to Dr. Montoya's talk? Yes. Did it open his eyes to the viral aspect of his patients illness? I would think so. Thank God Dr. Montoya was willing to take the time to share. And none of the doctors who spoke at the meeting received an honorarium for speaking. They spoke because they wanted to help other doctors learn about their topic.

Dr. Montoya is involved in further research that will benefit CFS patients. He is collaborating with other doctors at Stanford, and other doctors at major university medical centers. Since you are a patient of his you will learn of his research projects soon.

Best, Timaca

 

[consuegra]

I am not holding my breath that Dr. Montoya will be make much progress with his colleagues. However, circumstances being what they are in academia, I cannot imagine Dr. Montoya going anywhere - unless he choses to. There is also the very real possibility that external events in the world of XMRV might elevate Dr. Montoya at this school in an unexpected way. Gutsy researchers and clinicians often trump their loser colleagues in time.

Chris
http://cfspatientadvocate.blogspot.com

 

[Cort]

In these studies Dr. Montoya used elevated IgG antibodies to EBV and HHV-6 as diagnostic markers and also as measures of improvement. The hope was that these elevated antibodies would recede with treatment, and that they could be “read”.
Dr. Montoya presented data of movement, up or down in a predictable fashion, of neutrophils and monocytes with Valcyte treatment in various patient populations.

Does anyone know if this is what Lerner uses and what Montoya's or Lerner's cutoff's for active infection are? Dantini in Florida uses 4x's the normal positive as his cutoff for what he thinks constitutes an active infection.

 

[Cort]

I am not holding my breath that Dr. Montoya will be make much progress with his colleagues. However, circumstances being what they are in academia, I cannot imagine Dr. Montoya going anywhere - unless he choses to. There is also the very real possibility that external events in the world of XMRV might elevate Dr. Montoya at this school in an unexpected way. Gutsy researchers and clinicians often trump their loser colleagues in time.

Chris
http://cfspatientadvocate.blogspot.com

My guess is that Montoya has a reason to be 'gutsy' at this point - ie he has some strong data that he believes he can stand on like a rock.

 

[Timaca]

Cort~
This is what Dr. Montoya used for his study. http://clinicaltrials.gov/ct/show/NCT00478465?order=1
I don't know if this is still his criteria or not.

Best, Timaca

 

[eric_s]

My guess is that Montoya has a reason to be 'gutsy' at this point - ie he has some strong data that he believes he can stand on like a rock.

I hope this is true. It seems the clinical trial has never been published, so far, and the results were not as good as expected.

 

[August59]

It sure would be nice to see a good study published. We have been waiting awhile!

 

[Cort]

Perfect, Timaca - very high titers indeed! Thanks

 

[CBS]

If not this then what?

...I listened to Montoya's talk and it was fine, not as I feared, though still have reservations about ILADS as a platform.

Charity,

I just listened to Dr. Montoya's presentation at ILADS. I would suggest that Dr. Montoya was delivering a much more profound message than you suggest, in part by simply being at the ILADS conference. He started his remarks by expressing disappointment in many of his contemporaries who simply run a standard battery of tests, find nothing and then stop looking. Something we've all experienced. He stated that rather than stop looking, they should ask the question, "If not this (whatever they had tested for), then what?"

I suspect that some portion of the Lyme community might have reservations about taking advice from anyone connected to CFS (it was clear from the recent NYT article on Lauren Hillenbrand that many Lyme patients think CFS patients are simply Lyme patients who are too ignorant or unmotivated to go out and have the right tests performed ).

I found the talk to be quite characteristic of a courageous, curious and tireless ally whom we should all be thankful to have working on our behalves. Dr Montoya's message was that doctors ought to be asking "If not this then what?" rather than concluding "If not this, then its not my problem"

 

[Cort]

Charity,

I just listened to Dr. Montoya's presentation at ILADS. I would suggest that Dr. Montoya was delivering a much more profound message than you suggest, in part by simply being at the ILADS conference. He started his remarks by expressing disappointment in many of his contemporaries who simply run a standard battery of tests, find nothing and then stop looking. Something we've all experienced. He stated that rather than stop looking, they should ask the question, "If not this (whatever they had tested for), then what?"

I suspect that some portion of the Lyme community might have reservations about taking advice from anyone connected to CFS (it was clear from the recent NYT article on Lauren Hillenbrand that many Lyme patients think CFS patients are simply Lyme patients who are too ignorant or unmotivated to go out and have the right tests performed ).

I found the talk to be quite characteristic of a courageous, curious and tireless ally whom we should all be thankful to have working on our behalves. Dr Montoya's message was that doctors ought to be asking "If not this then what?" rather than concluding "If not this, then its not my problem"

My guess is that Montoya now believes he can 'move this field'. It is a courageous step but this is a careful researcher surrounded by other careful researchers working at a distinguished institution....I think he has found a rock (data) he thinks he can stand on - and that gives him strength - and so he's willing to wade out into the deep end...I think he wants to transform both fields.... (a big task!)