Update
Stanford levied the harshest punishment possible on long time professor, researcher and ME/CFS advocate – Dr. Jose Montoya.
In June, longtime Stanford professor and Director of the Stanford Chronic Fatigue Initiative, Dr. Jose Montoya was terminated from Stanford University for “multiple violations of University policy” which, according to women from his ME/CFS clinic who were involved, included “extensive allegations of sexual misconduct, assault and harassment” and “many other instances of harassment and misconduct”. After an investigation by an outside attorney, Dr. Montoya received the strongest possible punishment the University could provide – his employment was terminated.
Dr. Montoya, who’s worked at Stanford for the past thirty years, stated that he’s always acted “with the respect, professionalism, and the affection proper of my Hispanic culture”. He asserted that his inability to sufficiently appreciate the difference “between the social norms of his homeland and those of the U.S.” led his employees to “experience his behaviors as attempts at unsolicited sexual acts, harassment, and misconduct.”
Since his termination, Dr. Montoya has received several letters of support: one from 72 physicians and academics working in Dr. Montoya’s home country, Colombia, and one from 33 academics and physicians; 15 working in Colombia, 18 elsewhere, and three currently working at Stanford University.
The three women supporters who worked with Dr. Montoya at Stanford appear to have either worked in the Sutter Health Toxicology Reference Lab, which Dr. Montoya directed, or with him on toxoplasmosis projects. None worked in his ME/CFS clinic. While Dr. Montoya has received an enormous outpouring of support from his colleagues in Colombia, it’s clear he’s received much more limited support from his colleagues at Stanford.
The Impact of Dr. Montoya’s Termination
Dr. Montoya’s termination and its potential effects on the small ME/CFS medical and research community prompted a fuller look at Dr. Montoya’s work on ME/CFS. At first glance, it seems like nothing good could come of this situation, but the situation does, in fact, present some interesting possibilities which could, if they were acted on, end up being beneficial. Attempts, by the way, to get Dr. Montoya to respond to some issues in this blog failed.
Research
If Dr. Montoya’s termination stands, the fate of his Stanford Research Center and his continuing ME/CFS research are in doubt. It’s a good time, therefore, to assess Dr. Montoya’s research record and the possible loss to ME/CFS research that could ensue.
Dr. Montoya reported that, upon receiving a $5 million donation in 2008, he said, “Give me five years” and launched the first major Stanford effort on ME/CFS – the Stanford Initiative on Infection-Associated Chronic Diseases.
Montoya’s next publication (of which he was the lead or senior author) didn’t show up, however, until 2012, and that study, funded by Roche Pharmaceuticals (not his donor), was his long-awaited followup to the 2006 Valganciclovir study.
SCOPE, a publication by Stanford Medicine, reported in 2014 that Montoya was recruiting one of the largest ME/CFS cohorts ever: 200 ME/CFS patients and 400 healthy controls that he planned to follow over time and use in his studies. SCOPE provided news of a truly massive study – the largest study, in fact, that noted Stanford immunologist Mark Davis had ever taken on. Davis would use his new mass spectrometer to measure dozens of cytokines, 35 cell-surface proteins, 15 or so types of blood cells, and more than 47,000 genes and regulatory nucleic acids in 600 ME/CFS patients and healthy controls.
It was not until 2015 – 7 years after Montoya received his big donation – that he appeared as the senior author of an ME/CFS study. That study, which showed a striking abnormality in the right arcuate fasciculus of the brains of ME/CFS patients, received widespread attention in the media. Despite its scintillating results, though, over the next five years Montoya and his co-author, Zeineh, were unable to turn that pilot study into an NIH grant.
In 2017 a Montoya/Davis 600-person cytokine study indicated illness severity in ME/CFS was not associated with abnormally high cytokine levels (only one cytokine (TGF-b) was elevated) but rather with relative levels of cytokines. Montoya’s finding suggested the novel possibility that people with ME/CFS were abnormally sensitive to their own cytokines.
The study brought into question how efficiently Montoya was using his resources. The 192 patients and 392 healthy controls represented an unusually high number of healthy controls. A search through recent studies found that only one featured more healthy controls than patients and, in fact, the opposite was often the case (ME/CFS/healthy controls: 33/31; 39/25; 25/23; 251/153; 50.50; 200/70; 272/136; 14/11; 16/10; 10/10). One of the largest immune studies done in ME/CFS – the Hornig cytokine study – contained nearly equal numbers of patients and controls (298/348).
In a field with such little funding and such a small donor base, research programs must produce. Montoya’s output over the past 7 years has been meager, but in 2015 he reported that the program was about to start producing big time. He reported
- “exciting evidence” of pathogens
- that the final analysis of the big gene expression and immune study with Mark Davis was finishing up with a manuscript submission expected shortly
- that two manuscripts examining cardiovascular health and exercise in ME/CFS were in preparation for publication
- that two manuscripts from the Zinn’s on brain functioning were in review for publication
- and that the final analysis of a genetic and immune study from a Department of Defense (DOD) grant was underway and a manuscript was due to appear shortly.
Plus, four other studies were to begin soon:
- gene expression Lyme Disease study with Mark Davis – to begin in late spring of 2015
- A Severely Ill Patients study – to begin in the summer of 2015
- An HPA axis Biomarkers study – to begin in the summer of 2015
- A Universal Pathogen study that would look deeper into the body than anyone ever has before, surveying cerebral spinal fluid, lymph nodes, gut, bone marrow and natural killer cells.
Dr. Montoya’s 2016 Newsletter – the last newsletter The Stanford Chronic Fatigue Initiative put out – was much the same as the 2015 one. It reported that all the 2015 publications were still underway, it moved the start time of the new studies up a year or two, and stated that the new Lyme disease study was moving forward. Plus, a Brain and Tissue Bank was being set up.
A large gap exists between what Dr. Montoya said he would do and what he actually did.
Since then, of the 12 promised studies, Montoya has published three. Of the four new initiatives, one appears to have taken place. The exciting pathogen result never showed up. The final analysis of the DOD genetic and immune grant never ended up in a paper.
The immense 600-person trial that Montoya told SCOPE in 2014 was examining cell-surface proteins, 15 types of blood cells, and 47,000 genes and regulatory nucleic acids and gene expression appears to have turned into a 600-person cytokine study.
In 2016, Dr. Montoya’s research coordinator reported they were finalizing results of the gene expression part of that study, and the manuscript was going to be submitted “soon”. The report that the data was undergoing “heavy statistical analysis” strongly suggested something had badly gone awry which required special statistical tweaking to save the study. That attempt appears to have failed as, three years later, the study – which Dr. Montoya apparently used to repeatedly assert that ME/CFS is most akin to a systemic inflammatory disorder – has never been published.
Since Montoya received his initial $5 million donation in 2008, he has (besides the Roche valganciclovir trials) been the senior or head author of 4 physiologically based studies: the 2014 Zeineh brain imaging study, the 2017 cytokine study, the 2018 cytokine exercise study, and the 2018 Zinn brain imaging study. (He also recently published two epidemiological studies.) To my knowledge, the program has not over the past ten years received any NIH grants.
An attempt to find out how many donations Dr. Montoya’s research center has received over the past ten years hit a wall. Despite the fact that the Center appears to be funded entirely by donations, Stanford Medicine refused to provide any figures regarding donations. The return on investment, however, appears to leave something to be desired.
Dr. Montoya, it should be remembered, has been juggling multiple roles: professor, doctor running a clinic, researcher in two subjects – toxoplasmosis and chronic fatigue syndrome, and a frequent contributor to ME/CFS efforts – he’s had a tremendous amount on his plate.
Research Loss? (Or Research Gain?)
If Dr. Montoya had received NIH grants, his loss would be severe. The money he’d managed to wrangle out of the NIH would disappear and not be replaced. The NIH, after all, has got oodles of money; funds are not the issue: finding researchers able to snag some of those funds – that’s our big issue.
Private donations, on the other hand, are different – the funding pie is small and limited. Private donations need to be used as efficiently as possible. Every research program that receives private donations has to be able to produce a record of results.
Dr. Montoya did produce results – just rather slowly and, in the end, not many of them, and not particularly far-reaching ones. Other researchers, I believe, are engaged in far more innovative and potentially far-reaching studies. If a consequence of his termination is more private donations flowing to more productive researchers, then the field will see a gain, I believe. Some of those research efforts include:
- The Open Medicine Foundation funded the severe ME/CFS big data study, is furthering development of a possible diagnostic tool – the nanoneedle, uncovered the possibility of a plasma toxin, produced the Metabolic Hypothesis, uncovered red blood cell deformation problems, is assessing drugs, is investigating muscle physiology and metabolomics. We don’t know how any of these are going to turn out, but the Foundation is breaking ground in several new areas.
- SolveME is pumping out interesting pilot studies like there’s no tomorrow. Its pilot studies have resulted in outside grant rewards including NIH grants.
- Nancy Klimas has, with her extensive testing, supercomputers and modeling efforts, illuminated in detail what happens during exercise; has developed a two-drug combination; has begun a clinical trial – and has recently started pouring out papers.
- Jarred Younger has discovered a new way to assess neuroinflammation, is determining whether immune cells are invading ME/CFS patients’ brains, has investigated numerous treatments, and may have found a better low dose naltrexone.
- David Systrom’s invasive CPET testing is providing fundamental insights into the energy production problems in ME/CFS.
The one place the research field could be significantly hurt by Dr. Montoya’s termination is the loss, if the clinic closes, of his patient samples for studies. While Montoya did not produce many new studies, he was an important participant in several large studies led by others.
The Ron Davis Situation
Jose Montoya and Ron Davis, the great communicator and the great researcher, working together at one of the top research facilities in the world, seemed like a dream combination. In the end, it turned out to be nothing more than a dream. The two, in fact, were likely in conflict from the beginning.
Until Ron Davis arrived on the scene sometime around 2015, Jose Montoya was “it” for ME/CFS research at Stanford. Ron Davis’s entry to the scene, however, changed the landscape. With his immense reputation, his own lab, and the connections he’d developed over decades of research, Davis was able to quickly bring in Nobel Prize winning colleagues and other notable researchers to sit on the OMF’s Scientific Advisory Board.
Montoya, on the other hand, had reached deep into the University and established his own connections. He’d recruited hundreds of patients and healthy controls, had tons of samples and was working with Ron Davis’s friend, Mark Davis. He’d initiated a huge immune and gene expression study which Davis was surely interested in.
The situation seemed ripe for collaboration, but there appears to have been minimal collaborations between the two, and the evidence suggests that a split may have come relatively early.
Davis’s Working Group sessions included three doctors – Dr. Bateman, Dr. Kaufman and Dr. Chheda – but not Dr. Montoya. Similarly, two doctors, Dr. Bell and Dr. Peterson, now sit on the OMF’s Scientific Advisory Board, but not Dr. Montoya. As hundreds of people thronged to the OMF’s first Stanford Symposium, Dr. Montoya refused to attend and remained in his office. (He attended the second.)
That conflict between two researchers vying for funding was never better demonstrated than during the highly competitive battle to become one of the three NIH-funded ME/CFS research centers. The split showed up in spades when both submitted applications to become an ME/CFS research center – a situation which didn’t help either of them.
Not only did it look weird, but each had resources the other could have used. Montoya had the on-site clinic Davis needed to provide patients, plus he had research Davis could have potentially piggybacked on. Davis, on the other hand, had research cred like few others, connections all over the place and a large lab.
I asked Davis why didn’t he and Montoya work together on the NIH research centers application. His answer did not redound to Jose Montoya’s benefit.
Davis reported that Montoya’s late withdrawal from Davis’s NIH research center application put his application in jeopardy.
Montoya, he said, was on his application. Months before it was due, Montoya had agreed to provide the clinical core for Davis’s application and write up that part of the application. Not long before the final application was due, however, Montoya pulled out, told Davis he was submitting his own application (and invited Davis to be on his application).
With a critical part of their application now gone, the Davis team scrambled. They were able to get Lucinda Bateman and the Bateman Horne Center (who were already featured on other applications) to be their clinical core. Particularly grating for them was the fact that given how large the application was, they believed Dr. Montoya must have been working on his application for months before he told them he was removing himself from theirs.
The Clinic
Montoya’s ME/CFS clinic on the Stanford campus filled a vital need, and numerous patients have described him as an unusually compassionate, caring physician. Patients also, however, have at times reported on limited testing and treatment options that were limited, and suggested that the clinic could and should be expanded to provide more options.
We don’t know what will happen with the clinic. Stanford has said they consider it an important feature and wish to continue it. Dr. Montoya’s loss, though, gives Stanford the opportunity to re-evaluate the clinic and expand its features to better serve the ME/CFS community.
A full-time director who’s not pressed with the many other obligations that Dr. Montoya had would be a big and much needed start.
Center of Excellence?
In the last year, Ron Davis did include Dr. Montoya on the Mark Davis grant and relations seemed to be improving. (Montoya did attend the second OMF symposium.) Now, however, there exists the possibility of starting over and creating a true Center of Excellence at Stanford – one which features a close integration between the Stanford ME/CFS clinic and Davis’s ME/CFS research center.
There’s no reason such a Center wouldn’t be successful. Stanford would fulfill a huge need and feature one of the few Centers of Excellence for a disease that’s getting more attention every year.
Check out the fantastic response to Dr. Komaroff’s JAMA article on ME/CFS.
Stanford should take note of a ME/CFS Center of Excellence that’s done quite well: Dr. Klimas has thrived in her clinic/research setting in Nova Southeastern University. Stanford might also check out one of its former researchers, Jarred Younger, who has created a spectacularly successful ME/CFS/FM program at University of Alabama at Birmingham. This is an up and coming field: all it needs is support.
Conclusion
Stanford could use this opportunity to rethink its ME/CFS efforts on campus and create a true Center of Excellence.
The possibility that Stanford presents for advancements in ME/CFS care and research has never been achieved in part because the ME/CFS clinic and research center there were never fully integrated. The opportunity to do that now exists. Stanford should take this time to reassess its ME/CFS effort, improve its ME/CFS clinic, and fully integrate it with Ron Davis’s research effort. If that comes to pass, it would present a major advance for this community.
If, on the other hand, Stanford does not support the clinic and allows it to close, the loss of one of the few specialty ME/CFS clinics would be large – not just because of the patients who would be without a doctor – but because of the loss of patient samples for research studies. The loss of any ME/CFS expert is detrimental but we don’t know what will happen to Dr. Montoya. It’s possible he will open his own clinic.
In short, Dr. Montoya’s termination – as stunning and upsetting as it was and is on so many levels – provides the potential for a substantial loss to the ME/CFS community and a real opportunity as well to rethink and improve the ME/CFS effort at Stanford.
Thanks for this newsy update, Cort. I sincerely hope Stanford will proceed with the suggestions in your article. It’s very nice to think there may be a silver lining to the debacle of Dr. Montoya’s termination.
Thanks for the enlightening insight into this situation at Stanford. I’ve suspected that friction between Ron Davis and Jose Montoya has existed for some time. Whether or not Ron Davis is considered to help fix the ME/CFS clinic, it may be for the best that he stay focused at OMF.
I think of the synergistic possibilities – an easy source of well documented patients and perhaps even more funding over time. (???)
Synergy is always good, in my opinion.
Do you have any information on Dr. Hector Bonilla? I saw him in March at my last clinic visit. He seems excellent; I’m hoping the clinic continues to operate under his guidance.
I don’t know. I heard he’s excellent as well.
Sad and desperate. This is exactly why I’m no longer interested in being an active member of the ME/CFS community.
Because OTHER people are sad and desperate?
Terrific possibilities! Thanks for your enduring commitment, Cort. I was one of Dr. Montoya´s patients and had soured on his somewhat glib and limited approach to treatment. In my experience he had become a drug dispensary. Although I suspect the antivirals he recommended did help, I think my years of herbal supplementation, sleep therapy, diet adjustment and pacing skills (all self prescribed out of necessity) were most effective in mitigating my symptoms. My last meeting was depressing. He told me that he didn´t have time to review my comprehensive blood and urine test results and wasted precious on-site appointment time mentoring a couple students attending my session. I will keep my fingers crossed that Stanford continues its effort to service the needs of the ME/CFS community.
Let’s hope Stanford sees the possibilities present!
While I saw Dr. Montoya for approximately 4 years at Stanford. I liked him as a man and respected him for his compassion, but I found what he had to offer very limited and his organizational skills were terrible. I also had him tell me things in the exam room that he later denied when I contacted him after the exam, which makes none of this surprising. I hope they find a new Doctor for the clinic, but his personal loss is not bothersome in light of your article.
Wonderful article. Thank you.
I wonder if you think it is worth considering Changing the first paragraph.
In my understanding, there is a huge difference between sexual assault and sexual misconduct.
I don’t think we have any way of knowing which of these things was confirmed by the University and which of these things was included in the termination decision.
Thanks for pointing that out. I’ll fix it.
I’m disappointed with Stanford Hospital management for allowing Montaya’s practice to last so long. As a patient, I don’t need empty advocates, sympathies, … Speak for myself, Montaya’s treatment was totally bull. I was on antiviral medication for several months and nothing happened. I questioned why not do blood test again to see if anything changed. It wasn’t accepted and I was given the same stuff. After consulting with my PCP, I quitted this “treatment”. The difference between Prof Davis and Montaya is not competition for grant. Prof Davis is a scientist and he has all the reason to achieve a scientific, effective solution. His goal is not to run a clinic as a business. Wish him all the good luck.
I was originally referred to the clinic in June 2018 and scheduled in Jan 2019. Then because of a staffing issue, my appointment was abruptly cancelled. I eventually got rescheduled and now I’m supposed to be seen in October 2019. That is 16 months after referral! I am now afraid if they close the clinic I’ll never been seen at all. I have struggled with CFS for over 30 years. To date I’ve seen endocrinologists, rheumotologists, and neurologists who just want to prescribe dubious medication or infer its a psychiatric condition. I hope the clinic can be of real help. This is a condition that steals quality of life.
Kathleen, in recent months a Stanford researcher achieved a breakthrough in the diagnosis of CFS – he discovered an actual biomarker for the disease, which means a blood test can be established for the disease, and useful treatments can be developed.
Go to this link to learn about it:
https://themighty.com/2017/08/stanford-chronic-fatigue-syndrome-real/?utm_source=Chronic+Illness+Newsletter&utm_campaign=6577a9d72a-EMAIL_CAMPAIGN_2017_08_07&utm_medium=email&utm_term=0_afdeea0335-6577a9d72a-211783637
Kathleen, isn’t Dedra Buchwald still practicing near Seattle?
No, she is not. She works with native populations in eastern WA and has for years. I have an email from her expressing her dismay for the abrupt closing of the University of WA ME/CFS clinic at Harborview (a joke according to many patients, and recently run by a psychiatrist) and lravi g patients in the lurch.
Kathleen, I’ve been so blessed to be a patient of Dr. Bateman for many years. She knows information about ME/CFS is scarce and provides an amazing resource to help patients everywhere. Simply go to YouTube and search “Bateman Horne center” and you can watch the monthly educational videos that are given by her and other specialists on an array of ME/CFS topics! Good luck!
You’re not missing out on anything. The clinic has a standard treatment protocol, which as others have stated consists of prescription anti depressants for the anti inflammatory issues. LDN. A Mediterranean diet, turmeric, l-carnitine. And then valtrex antiviral (prescribed long term). Their stance is that it is a chronic EB/HV6 reactivation. The valtrex does not eliminate the virus, only keeps (supposedly) from spreading. Blood tests are taken on the first appt, but they were never discussed and when I asked, no clear answer… appts are every six months. You can email questions or concerns but it’s usually not much of an answer, ie “I seem to be having a stress reaction to the LDN”. The answer…(oh I’m sorry). Nothing else… see you in 6 months. At my first appt with Dr Bonilla he made a comment that I should not drive alone to the appt. I responded that my husband could not take off work. He proceeded To tell me how gay couples are more supportive of their partners. …ok. What am I to do with that information. I asked about seeing the Stanford Integrative clinic… no he couldn’t help me with that. What has helped me… TAKING PRENATAL POWDER DRINK AND SUPPLEMENTS FROM SEEKING HEALTH. I’m more active with no crashes. I’m tired because I’m busy. Not back to my old self yet, but working on it… myself.
Cort, This is an amazing opportunity for Stanford to re-organize with dedicated staff under a combined umbrella – Professors, patient care doctors, research staff and analysts and community education. I hope they will see our comments and take this opportunity to build out a much needed clinic. I live in Seattle, and there are no doctors here who treat ME/CFS patients and indeed an infectious disease doctor at one of our prominent facilities just suggested I look at Stanford. When I called this week they indicated short staff and that they can’t add even to the wait list at this time. Bill and Melinda Gates have engaged heavily in the University of Washington and global health issues – I have thought of reaching out to see if there’s help they can provide for ME/CFS. I also wonder, while we wait, whether Dr Montoya could be accessible in private practice or as a remote consultant. I have unexpected blood results and I would be interested in his opinion. I’m only 45 and want to get back to my life so very badly!
Yes! Rethink the whole thing! Get a director who only responsibility is the clinic, create a clinic that support lots of patients – they will never run out – and integrate it with Ron’s research effort – thus strengthening his work and other work on Stanford.
I wonder if they know that Tony Komaroff’s JAMA article has almost 60K page views which means in just a couple of weeks it has enough page views to put it in the top ten JAMA articles of last year.
I would hope they would want to be out in front in an exciting and emerging field.
Nancy,
I agree with the lack of MD resources in Seattle, though I have gotten helpful care from a local dysautonomia specialist and gotten excellent naturopathic care.
I was referred to Stanford in Sept 2016, but wasnt offered an appointment there until their call in May 2018 offering a May 2019 appointment, which I laughed at, as by then, I’d already greatly improved down the street at the Center for Complex Diseases, where I’ve been a patient since May, 2017.
As I discovered, though Montoya is very smart, something was very wrong at his clinic.
There you go – another indication that the clinic needs more support. The first place I would go in the Bay Area and one of the first places I would go anywhere is the Center for Complex Diseases with Dr. Kaufman and Dr. Chedda.
Would love to hear more about the helpful specialists you’ve seen in Seattle!
I have been seeing Dr. Bonilla for over a year. He is wonderful, caring and knowledgeable. And, I asked about the Clinic closing, he stated no, he would be here to continue working with us.
To be honest, I feel that this article although well-written and quite comprehensive, is biased. Both my niece and nephew were treated by Dr. Montoya over a period of 7 years, and both were part of a study. Before treatment started, it was made very clear that, sadly, not everyone’s CFS responds to anti-virals. My family members were among the fortunate 70% that do respond. They started as extremely ill, bed-ridden, non-functioning teenagers and are now fully-functioning adults. The treatment was unpleasant and time-consuming, but to suggest, as one person above does, that the results would compare with naturopathic treatment – I think this to be a silly premise.
I am also biased, of course, because two kids in my family who seemed destined for lives suffering in the shadows had their futures returned to them, but I will attest to the persistence and consistency of the treatment process. Without either of those things, the unpleasant and rigorous regimen would have failed. I will put it in this way – Dr. Montoya never gave up on them, never stopped pressing for a cure for them, never lost steam for one moment in all those years.
I suggest that there is much here that is unknown, I also suggest that as the article above does NOT contain an interview with Dr. Montoya AS WELL as Dr. Davis, we will never know the real truth here. And as a family member of two CFS sufferers, I strongly insist someone needs to fully do their research and get this information out to us. We do matter.
I hope and pray that Dr. Montoya continues in CFS, continues his commitment to his patients and puts his shingle out elsewhere very soon. My niece and nephew fear a recurrence without being under his care.
I have one more comment. Before Dr. Montoya, Stanford had no interest in CFS patients. The physicians adhered to the conventional approach, which was, as we all know, it’s not real, it’s in your head, it’s unclear, we can’t find anything. Dr. Montoya pushed, pressed, insisted, believed his patients and ultimately was allowed to carve out, however small, a place for the CFS sufferer. The overwhelming majority of doctors still think traditionally about this disease, and offer nothing. I fear that without this visionary and driving force, conventional forces will again take over, leaving CFS people and their families out in the cold, just where they started so many years ago.
Yes, Dr. Montoya’s views are not included but I don’t think there’s necessarily a paradox here. Dr. Montoya can be an excellent physician regarding viruses – they are his field – while not being so effective or up on other things. I know someone with ME/CFS, had a terrible undiagnosed viral infection, was probably going to die, couldn’t get help from anyone else, and not only did Dr. Montoya treat him in an effective and compassionate manner but he fully recovered! He had nothing but sterling words for Dr. Montoya.
Dr. Montoya did an amazing and courageous thing by opening an ME/CFS clinic and research center at Stanford. That doesn’t mean, though, that things can’t get better – that there isn’t room for improvement.
With regards to Ron Davis – I heard about Montoya’s withdrawal from the research center application caused not long after it happened; i.e. I’ve known about it for several years. I remember how shocked Ron and his partner Janet were about it. They didn’t ask me to write about it and I didn’t ask to write about it. I didn’t feel that writing about it would help so I kept it quiet. If Dr. Montoya was still there I would have continued to keep it quiet.
With Dr. Montoya’s employment was terminated, though, I wanted to put things in perspective and I asked the Davis’s if I could write about it. I wanted to show that things were not hunky dory at Stanford and that rethinking the whole situation and bringing in new personnel who could possibly integrate the ME/CFS clinic with Davis’s work could make things better.
I don’t have any reason to doubt Ron’s and Janet’s veracity. Given what we know of Davis – his history of collaboration and succcessfully working on large projects, the researchers (friends really) he’s gotten to sit on the OMF’s board all that – and my personal experience watching him and talking with him – indicates that he’s very good working with people.
Dr. Montoya, of course, as the letters have shown has his supporters too. He’s won numerous teaching awards and is clearly beloved by his students and many of his patients. He’s also been very generous with his obviously limited time supporting ME/CFS in ways that he didn’t need to. He had a wretched falling out with the Zinn’s but appeared to be working well with Mark Davis and collaborated on several ME/CFS studies with other researchers.
The main takeaway from all this for me is that for whatever reason something went awry at Stanford, the situation was not optimal, and this big change provides an opportunity to relook and rethink what can be done for ME/CFS there.
An attempt to get in touch with Dr. Montoya via his attorney received no reply.
Thank you Cort very much, and to all of the commentators in this forum on this article. In totality we are crystallizing the thought process that university decision makers need to take to align science, research and treatment along a single axis.
Query however, had Dr. Montoya remained at the Stanford clinic, and given his more collaborative approach to Davis, would not the great things that you outlined above potentially still have happened or could have happened with Dr. Montoya still in place? (Human beings do evolve over time and it sounded as if reconciliation could have been in the works).
I guess we will never know!
Pam Decharo,
You stated “The treatment was unpleasant and time-consuming, but to suggest, as one person above does, that the results would compare with naturopathic treatment – I think this to be a silly premise.”
While MDs at multiple medical systems in Seattle refused to help me, my ND was busily running LabCorp and other tests and prescribing herbs, nutrients, and yes, Valtrex and antibiotics, saying that I was a candidate for IVIG.
This caused me to seek expert care, out of state, which has helped. Without my ND pointing me in the right direction and supporting me, I would not have had the confidence to pursue this
Conventional medicine only gets you so far, with no FDA approved drugs for ME/CFS or mitochondrial diseases, nutrients have been critical for progress in my complex case. And, when the supply for compound pyridostigmine recently dried up, due to market manipulation by Valeant Pharma, my ND suggested Huperzine A, which has similar cholinergic effect.
It is highly unfair to knock an entire profession which might be helpful on this thankful journey, without educating yourself thoroughly on what they do.
Montoya’s clinic was useless in helping me and limited in its solutions according to many patients.
It is absolutely true that Stanford had no interest in ME/CFS before Dr. Montoya. I called there and their answering machine message stated that they do not see patients with CFS in the early 90’s. Cut off without even being able to even speak to a person was devastating!
Pam, excellent analysis.
I totally agree with you!
Cort, I have a couple of questions. Would Mark Davis be interested in taking over for Dr. Montoya? Where does Dr. Kogelnik fit into this story? I thought that when he left Stanford to open the Open Medicine Clinic , it was because of problems between him and Dr. Montoya. Is that true? I assume Dr. Kogelnik is on good terms with Ron Davis since last I heard, he is taking care of Whitney. I remember that the last time I saw Dr. Kogelnik before I left for Nashville, he was very nervous and worried about Whitney being transported by ambulance that day to have one of his lines, perhaps his feeding tube, replaced. What would Stanford’s motivation be to keep the clinic open? Or to close it? Also, even if they close the clinic which of course we hope they won’t, why would the data base and lab samples be lost? Wouldn’t other researchers want to have them? Do you think patients acting under #MEAction or some other way can influence Stanford’s decision on this? I felt very sad reading the beginning of this article as if we are kicking Dr. Montoya while he’s down. But we as a community have to look to our future now. And it would be amazing to have an integrated ME/CFS program at Stanford! Thanks for your article and best to you!
Dr. Kogelnik was discussing one of his patients with you during an office visit? Um, medical ethics?
Perhaps he did make a mistake there. But I believe I asked him why he was so stressed and he said it was because he was worried about Whitney’s transport. We all know that it is very difficult for Whitney to leave his home because of advocacy articles featuring him and his parents Ron Davis and Janet Dafoe. I found his deep concern for Whitney touching and endearing.
Esther Siebert, thank you for the humanity in your response. I also feel the top portion of the article was gratuitous and, if the detail re. one “outside attorney” was meant to reassure me the process was fair, it did not.
Mark Davis would not work out as he’s purely an immunologist but I was told that Emily Brossard has been working really hard on this and there is movement in this area and I will get in touch with her and hope to report back on its status.
I don’t know about Dr. Kogelnik and Dr. Montoya. I don’t know what happened to Dr. Kogelnik – he had such visionary ideas for ME/CFS! I hope he is still someway involved. We need that kind of vision.
Well, I was originally defending him, however he’s starting to sound like a sly dog. What’s with this huge amount of healthy controls? Bizarre why he needed so many!!!
I can think of a reason, perhaps a chance to get close to plenty of extra women?
“Innocent until proven guilty” I said previously, however getting the sack would suggest a big thorough investigation happened. Although it’s unfair for us to judge without hearing exactly what he did. Like was he a just fool who was mistaken for more than just a friendly hugger, or was he using hugs as an excuse to get a sexual buzz. or was he disrespectful butt smacker or worse?
Because if he was doing stuff intentionally then that’s a whole other level of manipulation of power and utterly selfish and cruel to everyone from victims to even patients everywhere. But We still don’t know. So we have to be careful not to be too harsh unless someone has the actual allegations?
Still, it’s better he’s gone now before the big funding eventually comes. The last thing we need is dubious people, and I’m getting a dubious vibe
As I understand it, Dr. Montoya did not cross any lines with his patients. In my case, I initiated hugs with him because I was to grateful to him and he was so kind to me and my husband. There was nothing sexual about it.
Cort, do you know where all the money is gone of the many big studys Docter Montoya wanted to do and never fulfilled? Or never published?
Is he able to take all the patientsamples with him and begin on his own? are the patient samples not belonging to stanford itself?
I have also the feeling like someone wrote, nor ron davis, nor docter montoya are speaking really about this matter and stanford allso not completely.
I am sad for the studys docter montoya did not do and for the publishing he did not do and for the overwhelming cost of so many health control individuals and I have the feeling we (cfs) got ripped again. Stanford must have known what was going on and left it that way. I am over 3 decades severelly ill and getting worse and worse. again, there where made promises of study’s from , now this time docter montoya, and it smashed me in the face it did not happen. My time is running out. that is hard to take. How many promisses did we all have gotten over decades?
The huge number of healthy controls shocked me. I’m obviously no statistician but I couldn’t remember ever seeing anything like that and I do tend to look at the number of study participants in a study. I asked a researcher about it – he said it was very unusual to see that – and that when he began a study he always consulted with a statistics expert to determine the optimum number of samples because he didn’t want to waste money on unneeded testing.
I thought maybe it was because gene expression was involved but I found other gene expression studies which did not have higher numbers of healthy controls. The apparent loss of the gene expression study was really unfortunate. In 2014 at his Stanford Symposium Dr. Montoya reported – and I vividly remember this because I was so excited about it – that “there is genomic evidence of a chronic inflammatory state – that when they compared the gene signature found in hundreds of other disorders to see which disease MECFS is closest to that ME/CFS scored a closest to ‘systemic inflammatory syndrome’ – i.e. it’s an inflammatory disorder.”
I do know there were statistical problems with that study but I don’t know if those played a role in it’s never being published. For all I know it will pop up at some point. I certainly hope so. In this day and age gene expression studies are not mysteries – they’re done all the time, and if somehow a 600-person gene expression study failed, a lot of precious money went down the tubes.
This is so upsetting on so many levels. All of this drama at Stanford …..and patients are completely unaware of it???!!!!
Instead, they are making decisions, weighing programs, trying to find the very best doctors and treatment, and all of this squabbling was going on behind the scenes?
When the news first came out about Montoya, ME/CFS facebook groups and CFS sites like Health Rising were engaged in futile discussion along ‘party lines”: Montoya the hero who cares, still defended by patients and some staff vs. victims and their supporters. Now we discover that there was a third element at play….conflict between the primary researchers, questions about money and whether it was being used effectively, disorganization in the operation on the research side of the Stanford house that was spilling over into the clinic.
No one, that I can tell, is yet talking directly about the impact of all of this on the patients. Stanford was supposed to be a top program (according to themselves, I guess). Montoya was supposed to be anyone’s best chance…..at least the only one anyone can afford, given that some of the most excellent Drs around charge as much as $1000 an hour and don’t accept insurance including some of the people associated with Ron Davis’ group apparently.
Patients weren’t sure about Montoya’s antiviral approach, but at least it was something concrete to try (and not have to mortgage your house). Respected physicians in CFS world referred to him.
We spent 8 months trying to convince a judge that Dr. Montoya was one of the best clinicians in the country and the research going on there was at the cutting edge. We won our case against MediCal and were approved to take our daughter there…….. and then the axe fell.
No one called us to reschedule our daughter’s appointment (which we had scheduled 18 months in advance). We called them twice and got a “oh sorry we’ll get back to you” and they haven’t. We don’t even know who we would get to see. And if we should see them if we get the chance.
Patients on this site report that Dr. Bonilla is good…more relaxed and open now…but, oh, by the way, there is mold on the walls.
So while Stanford decides if they want to ACTUALLY want to become a leading center for ME/CFS treatment, patients have to sit at home and wonder….yet again….who they can trust, who can truly help them, what is real and what isn’t, and whether there is any hope for help at all….anywhere.
Patients are dependent on Facebook feedback to determine which doctors are worth seeing….especially given that the mere effort to see them could be physically costly, as well as emotionally devastating.
I keep reading reports on this site that Stanford is now deciding if they want to become a world class treatment site. I thought that’s what the were. How could we have ever known they weren’t?
Someone needs to apologize to all of the patients, like my daughter, who had their hopes pinned on Stanford (as much as any CFS patient can allow themselves to have hope about any doctor, place, or treatment)…..and to parents like me who have spent hours, and now years, studying the research, attending symposiums, and even speaking directly with Montoya….only to discover that all of it was a house of cards.
Well I think everything in your powerful and heartfelt comment makes sense and suggests that Stanford really needs to up its game here – and build the clinic it should be proud of and which works for the doctors, the patients and hopefully even the researchers there.
I hope Stanford reads your comment!
my trust is gone to! in whole medical research and docters. who can we still believe? to many promisses where broken for me. And they never tell what plays behind the scienes. I even do not trust anymore to donate. the fact that docters take a 1000 dollars an hour, even some around ron davis (with his severe son) is so bitter.
I never could go to those docters because I am bedbound but even who could pay it. and I have made donations for research that I now have seriously doubt about. I am so sorry for your daughter and for your whole family and all the other victims. betrayel again, I feeel bitter.
As an Incline Village survivor and original prototype for Holmes CFS, I figured that it would stand to reason that any “CFS doctor” or researcher in the world would appreciate an opportunity to “hear the story” from a direct source.
I was surprised that they don’t see it this way.
Quite the opposite.
They know NOTHING of the history or evidence of the CFS syndrome, but flap their faces as if they are the great God experts, when they don’t know jack about the situation.
So I have a test of “academic integrity”
I offer to show them documents that help explain the convoluted history of this crazy syndrome, and observe their response.
Which has been the exact opposite of what an honest academic-researcher would do.
So who can I trust?
NONE OF THEM!
much typo mistaces… ment what is playing behind the scenes, like you did…
I indeed hope that stanford and others in the cfs field will read your comment!
I doubt if I ever donate… who can I trust?
Paulette, my heart broke when I read about your daughter! I replied to a comment above but wanted to make sure you saw this also. My CFS started when I was 19 and I’m now 42. Even a shred of hope is vital. I’ve been so blessed to be a patient of Dr. Bateman for many years. She knows information about ME/CFS is scarce and provides an amazing resource to help patients everywhere. Simply go to YouTube and search “Bateman Horne center” and you can watch the monthly educational videos that are given by her and other specialists on an array of ME/CFS topics! ?
Thank you, Paulette, for expressing so clearly and completely my own ongoing experience as a mother of a daughter who is ill.
“Competition” was the problem from the moment Dr Komaroff arrived in Incline Village in 1986.
You would think with a Harvard researcher on the job, things would go better.
Which they seemed to, at first, with Dr Komaroff finding low NK cell function in “the mystery malady”, but there was a hitch.
Dr Komaroff was mixing up his Boston patients with the Lake Tahoe illness.
He wasn’t seeing any clusters, no outbreaks, and certainly no large epidemics.
His version of “CFS” was not the same as what Kaplan and Holmes of the CDC were investigating.
Dr Komaroff was talking about the “adult mono” or “CEBV Syndrome”, not the Tahoe Mystery Illness, which was the basis of “Chronic Fatigue Syndrome”
So when the existing EBV groups heard about the new syndrome, they simply flipped their name to CFS, but didn’t accept Dr Cheney’s evidence that EBV was neither necessary or inherent to the disease.
In effect, Dr Komaroff and the EBV groups rejected the basis of CFS, but took the name anyway and reverted it right back to being “CEBV Syndrome”
Naturally, the CDC was delighted.
They wanted to defuse the scare of the Lake Tahoe outbreak and dumb down the syndrome to being little more than fatigue, and here… Dr Komaroff and the “patients community” did the job for them.
And to this very day, no “ME/CFS researchers” ever bothered to find out why all this “confusion” happened.
They just plow on, saying “That doesn’t matter anymore. We are moving BEYOND CFS”
Yep. They sure are. To even DEEPER confusion.
Cort, thank you for continuing to find a “silver lining” after so many years of disappointments. You keep us hopeful. You are a blessing to so many of us.
Cort this article answers many suspicions that I have had for quite a while. Very well written!
I was a patient of Dr Montoya’s. I had waited a long to to see him. Reading about his work I was sure that he would be up to date on the latest and greatest treatments for ME/CFS. My first visit was with Cara Gilbert-Au,NP. She was very nice asked me the usual questions and had me continue the treatments that I was already on. Valaccyclovir 500 mg 2xdaily, Celebrex 200 mg 2xdaily and LDN 4.5 mg at night. This was very disappointing, no new treatment.
I was so happy that my next appointment would actually be with Dr Montoya because Cara Gilbert had left his practice. Surely he would have some answers, he was an expert! I talked to Dr Montoya about my current treatment and asked him about other treatments. I had been on antivirals for so long without any improvement and want to try something new. I asked him about using other drugs that Dr. Nancy Klimas and Dr. David Systrom where using. He was unaware of these, so I showed him some videos of them talking about these treatments. He asked me what I wanted to do? I said, “your the Specialist what do you think I should do?” He then put me on a stronger antiviral, Valganciclovir (even though my blood work showed no active virus.) Valganciclovir is a strong antiviral in which you need follow-up blood testing, he offered none nor required this. Needless to say both me and my husband where totally disappointed with the appointment.
At this point I was nervous about starting a stronger anti-viral, because I had heard that long term use of anti-virals could cause mitochondria damage. This worried me because research has already shown that ME/CFS patients already have mitochondria issues. I only took the Valganciclovir for 3 months with no improvement and have been off antivirals ever since.
Also more than two years ago I had reached out to Dr Montoya and his research staff about putting me and my twin sister into some of his research projects, this never happened. In contrast I contacted Dr RonDavis around the same time. Me and my twin sister have given several blood samples at his Stanford Research Center and are in research studies in labs in the U.S. and Canada.
Before going to Dr Montoya’s office, through my own research. I had learned about LDN, Celebrex and PACING (LDN and Celebrex help with inflammation.) These three things along with some supplements have made the biggest change for me. This regiment has allowed me to very, very, very slowly increase my activities.
Dr Montoya was a compassionate Doctor, who had done some GREAT thing in the beginning and could have done even greater things in the future, but it was evident that he had let his ego get in the way. He had too many irons in the fire and he was not keeping up with the latest research. Me and many of his patients waited several months to get into his Clinic, thinking that he had the latest and greatest treatments and many where misled!
I have attended all of the OMF Symposiums and always wondered why Dr Montoya was not there. It is such a GREAT opportunity to learn about all the latest research and speak with all of the Researchers. Correct me if I am wrong, but I think that Dr Montoya only attended a couple of hours in the afternoon at the last OMF Symposium. This is contrary to Dr Bateman who is front and center and anytime I talk to her, she is familiar with all the latest research. If you are looking for an expert in the field she is the BEST in my book. I’ve attended several of her classes and lectures she provides.
I am so impressed with the OMF and their policy that you can only be part of their Research Collaboration if you are willing to share all of your research data. This is a win, win for the ME/CFS community and it doesn’t allow EGO to enter in the equation.
Thank you Cort for all of your hard work and dedication. You make it so much easier to keep up on all the latest research!!! What you have done and continue to do, is an invaluable resource for the ME/CFS community!!!
Thanks for relaying your experience and I hope Stanford is reading these comments. Yes one would certainly hope that Dr. Montoya would be up on all the latest treatments – it’s not THAT hard to do – but then again, while I don’t know exactly what Montoya’s workload was but I heard he was only at the clinic a couple hours a week.
We need someone bright, eager and curious who can focus on the Clinic I think.
Perhaps if Dr. Montoya opens his own clinical practice now, with his responsibilities limited to that, he will be able to go beyond his anti-viral solutions and expand the treatments offered. Even if he has to get up to speed on treatments, he certainly understands the disease and could redeem himself (if he needs to) by continuing his work in helping patients. This is what I wish for.
What a great discussion. Thank you , Cort. You always amaze me. I have moderately severe CFS following neck/pelvis injury, 1998, but my son ( still struggles) got it at age 5 ( 1986) following a well documented case of EBV.
And yes, this whole scenario from Incline Village to now is just a little strange. The recent legal appeal of a New Jersey Congressman to the Pentagon, concerning bioweapon experimentation at Plum Island and Fort Dietrich, 1950-1975, with ticks, was no surprise to me, but a shock to those who have not appreciated the extend to which governments have experimented, and altered, living organisms. Epstein Barr Virus was part of this program. Read about Operation Sea Spray, Operation Drop Kick, Operation Big Buzz, Operation Big Itch, Operation Midnight Climax. Disturbing and shocking.
My husband spoke with Dr. Komaroff at the 2009 Reno conference. He mentioned that he saw a few ( ME/ CFS/ FM) patients in the late 1970s, but the ‘flood gates’ opened in the 1980s.
I always thought that the point of origin and history of ME/ CFS
was interesting. What a perfect place to “drop” a new organism – a relatively isolated, upper middle class community in the mountains. Then there was the CDC dismissal of the whole situation. And the incredible hurdles/ barriers anyone ( professional or otherwise) we have all encountered. It is nearly 25 years later, and millions of us are still disabled.
I have written a lot about physical structure and injury potentially leading to the development of CFS/ ME/ FMS. Still thinking this is a huge risk factor. But as a clinical diagnostic microbiologist ( early career) I appreciate that organisms take advantage of situations where blood flow or immune function is not quite up to “par.” Interesting that I had one tick bite in 2010 in Virginia ( consult withnTMJ specialist) and am now CDC positive ( Lab Corp) for Lyme. ( live in Calif) And Yes, it was a Naturopath, not my board certified infectious disease/ immune doc, who found it.
So, may All that is Good and Strong and Beautiful be with each of us, and with those who seek the truth and “cure” of this plague upon Mankind.
I am enrolled in Stanford’s ME/CFS Clinic, but had to wait close to 2 years before I could get an appointment. I never got to meet Dr. Montoya although learning that Dr. Bonilla was a graduate of the same Columbian University as Dr. Montoya, and that he also had an infectious disease background like Dr. Montoya, made me wonder how Stanford recruited him. Perhaps Dr. Montoya had some influence…
I found Dr. Bonilla to be very personable although there were many instances during our first and (to date) only interview, of language misunderstandings. He also didn’t understand how Medicare worked and confused it with my past health insurance carriers (Kaiser and others).
My first hint of disorganization came when, upon completing my ‘illness narrative’ the address where it was to be sent (hard copy) was incorrect. Although I sent it in well before my appointment, it was obvious it was never received although nobody would confirm this. It was only later that a NP said it was never scanned into my chart.
Because the doctor didn’t have any of this information, much time was wasted collecting information which was already available in my narrative.
When I was being interviewed, I also brought in copies of my genetics, specifically my results on IDO2 which clearly demonstrated pathogenic SNPs discussed by Dr. Phair’s research on metabolic traps. Dr. Bonilla took my copy and tossed it aside as seemingly worthless. He also dismissed my queries about autonomic testing because I know I also have severe autonomic dysfunction.
He emphasized neuroinflammation as the probable cause of CFS and was very excited about a certain article by Yasuhito Nakatomi. As for labs, I had a whole host of tests for past infectious disease exposure–(and all were positive). My thought was perhaps, being an infectious disease specialist, he may be seeing CFS with those kind of ‘blinders’ even though there is all kinds of information about additional probable causes.
I asked him if he worked with or knew about Ron Davis and his research on the nano needle etc, and he side he didn’t know who Professor Davis was. When I asked the same about Dr. Klimas (where I participated in a double blind study on MTHFR) and he said he never heard about her either. He also said he never read Health Rising or knew who Cort Johnson was. Now I’m thinking, there must be something wrong with someone who is not exploring what else is out there research-wise!
As I have described on this site, for my treatment a I received a zeroxed copy of a list of possible treatment approaches. The categories of Pace/Rest (it was recommended to get a Fitbit), NK cells/Inflammation (use LDN for pain), Anti-inflammatory drugs (PLaquenil, Colcrys, Arava and Abilify), Diet (Mediterranean), Supplements (curcumin, green tea, dark chocolate, CoQ10, Magnesium and L-Carnitine and to avoid B12) and finally, Others (with Prozac listed). He checked various boxes for my treatment plan (most notably Abilify), and I was given the choice to either see a NP at the three month mark or to see Dr. Bonilla at the 6 month mark.
I chose an in-person visit with his NP at 3 months and fear that the next plan of action will be to be ‘bombed’ with anti-virals (although this was tried decades ago with no success).
So, for those of you who wonder what an appointment at Stanford’s CFS’s Clinic might entail, there you have it! Personally, I think, so far, it is somewhat limited… I have my concerns…
Cort, as you mentioned, there is room for a lot of improvement! But then again, something is better than nothing.
Perhaps our ME/CFS community might start a ‘letter’ writing campaign to influence Stanford to continue and hopefully upgrade its Chronic Fatigue Clinic. And who and where might you suggest we send these to?
Agreed. Pluses and minuses – a HECK of a lot better than nothing for sure and there is room to build. It would be great if we could get a young Kaufman in there – someone who’s interested, loves to do the research, attend the conferences – this IS a fascinating disease. Both Kaufman and Chedda love the complexity and the stimulation that comes from that…. That person must be out there.
Forgot an additional thought; Stanford almost always sends a survey after each appointment so a patient can register his experience of the facility, staff, and doctor. With the Chronic Fatigue Clinic I didn’t receive the survey. I even requested to receive a survey so I could express my concerns. Still no survey.
I don’t know why not, but think patient’s experiences could be very helpful in improving their Clinic.
Critical really! Again another sign that the Clinic was not supported well. Thanks for relaying your experiences.
(This comment was made by someone impersonating Simon Wessely). Any credible article approaches the person who it is written about.
You could make the accusation about the lack of progress to anybody working in the ME/CFS.
Not a good piece.
I agree that it would have been best to attempt to reach Dr. Montoya. Thanks for that reminder. I would not automatically deem an article not credible because that’s missing that – if the article has a good factual basis – which I think this one does. With the exception of the report from the Davis’s most of the article reports on facts out in the public record – statements Dr. Montoya made at a conference or in his newsletters or made via his assistants and his research record. .
Dr. Montoya, through his attorney, has made it clear that he’s not accepting questions. Would he have accepted questions regarding his research record? I don’t know but with one exception when I communicated with his research director, attempts to reach him over the past ten years have been fruitless. There’s something to be said about being reachable as well. Nevertheless I should have tried – I agree, and while it’s a bit late 🙂 I have forwarded questions to him via his attorney and will give him the space to respond if he so chooses.
I agree that we haven’t found “the answer” and field has not coalesced around a central theme – if that’s how “progress” is defined, but I also would say there’s a difference between doing creative and potentially ground-breaking and research that is not – and I would put Dr. Montoya’s research in the later category.
Research that has the possibility of producing a diagnostic biomarker (nanoneedle), producing a framework for ME/CFS (metabolic trap), that documents neuroinflammation in a new way (Younger), that explicates the physiological changes occurring during and after exercise (Klimas, Systrom), creates a model which suggests a drug combination can work (Klimas) – that kind of research I would put in the first category. Many of these things may not work out but they represent creative research efforts which have a lot of potential.
Contrast those studies and studies teasing out immune networks which point to specific pathways which may then inform drug possibilities – with a 600-person study examining a substance (cytokines) which have received a great deal of research in the past in ME/CFS which has yielded mostly inconsistent results. Was it helpful? Yes. It did highlight TGF-b – that’s a solid finding for cytokine research – and the study suggested some sort of cytokine sensitization may be occurring – which researchers have proposed.
Could the money for that huge study have been spent more productively? My guess would be yes.
Was Montoya’s research poor? I wouldn’t say so – it opened some new ground in ME/CFS – was it the best we have? I wouldn’t put it in that category either.
Sir Simon Wessely’s work is described in Wikipedia as follows:
“Wessely believes that CFS generally has some organic trigger, such as a virus, but that the role of psychological and social factors are more important in perpetuating the illness, otherwise known as the ‘cognitive behavioural model’ of CFS, and that treatments centred around these factors can be effective. He describes the cognitive behavioural model as follows: “According to the model the symptoms and disability of CFS are perpetuated predominantly by dysfunctional illness beliefs and coping behaviours. These beliefs and behaviours interact with the patient’s emotional and physiological state and interpersonal situation to form self-perpetuating vicious circles of fatigue and disability… The patient is encouraged to think of the illness as ‘real but reversible by his or her own efforts’ rather than (as many patients do) as a fixed unalterable disease”.
Disability insurers were delighted to accept Sir Wesseley’s conclusions. All of us who have had difficulty having our disability claims accepted can give Sir Wesseley a big shout-out.
In article published in the respected journal “Nature”, Sir Wesseley is quoted as saying in a section of the article which is titled: Fear and Loathing
“Simon Wessely, a psychiatrist at King’s College London who is reviled by many with CFS for emphasizing the neuropsychiatric aspects of the syndrome, ‘worries that XMRV will have a negative effect on CFS research.'”
Several paragraphs later, he is quoted as saying:
“Wessely says although he is used to being subject to abuse, other researchers were ‘absolutely appalled’ by their treatment.’ This will convince another large group of decent scientists to say: oh no, I would rather go find the gene for homosexuality or do work on images of the prophet Mohammed than do this.”
The complete article may be accessed at https://www.nature.com/news/2011/110603/full/news.2011.347.html
All of us who had difficulty with disability insurance claims can give a big shout-out to Sir Wesseley who not only successfully convinced the NHS to fund CBT and GET/PACE research rather than biological research; he also consulted with disability insurance companies which were undoubtedly pleased to adopt his approach to rating claims both for legitimacy, and for length of time for which the companies should be responsible.
Patients may also find the following illuminating: https://www.goodreads.com/quotes/tag/simon-wessely
An attempt to get in touch with Dr. Montoya via his attorney received no reply.
Cort, you wrote in this article that the nanoneedle uncovered a potential plasma toxin. Did someone at the OMF actually say “toxin”?
No – my apologies: it was more a poor choice of words. I was struggling to find a word to use. My understanding is that they don’t know what it is. I think I was trying to signify, in my befuddled way, something that was toxic to the energy production process – but not necessarily a toxin.
Another who was totally disappointed with Stanford. My experience much like Nancy B’s above. They didn’t have my info in the computer either, and didn’t care, acted as if it wasn’t important. (so why did I spend so much time on it?) The PA also didn’t know of a very well known person in the CFS community. Nancy, if you see this, why no B12?
Hi Betsy, regarding Dr. Bonilla’s discouragement of supplementing with B12, it was written “B12 may increase inflammation (10,11)” on my handout. On the back of the handout there were references for most of the recommendations.
10) referred to, Shivappa N. et al. (2014) A population-based dietary inflammatory index predicts levels of C-reactive protein in the the Seasonal Variation of Blood Cholesterol Study (SEASONS) Public Health Nutr. 17(8):1825-1833
11) Shivappa N, Designing and developing a literature-derived, population-based dietary inflammatory index, Public Health Nutr. 2014 Aug; 17(8):1689-96
Now this is all well and good that there are references, however since I have a mutation where I do not utilize certain forms of folate normally and folate and B12 are kind of co-factors important in energy production and other body functions–I ignored this recommendation.
Besides after participating in the Klimas study I found my fatigue got significantly worse over the three month trial–and subsequently found out I was one of the people who was denied a useable form (for me) of folate. I have since done my own private N=1 by reintroducing methyl folate and later methyl folate and several forms of B12 and was pleased to notice some energy rebound–Dr. Bonilla’s recommendations be damned!
I mean really, pernicious anemia can make you tired! If you can’t process certain forms of folate, then it is likely you cannot properly process B12 either! IMO, the body chemistry is all a balancing act and too much can be detrimental as can too little…
I’m also one consider every doctor’s recommendations with a critical eye and a dose of ‘horse sense.’
Thanks Nancy, I’ll stick with B12 too. Am very interested in your mention of being in a Klimas study -was that with a Christopher Larimore? I was in a study because I had the MTHFR snip, took a pill for several months, filled out surveys, got my blood drawn twice and the last email received from him was that the study was over and we’d be hearing from him re our blood results and if we had the placebo or not. Then, nothing, and it’s been about 4 months since it was over. Have emailed him 3 times and no response. If this is the study you were in at least I’ll know that some did get the final results. Thanks. email is girl42@comcast.net (sorry for going into this Cort but I’d really like to get some answers…)
This reminds me that a donor gave Dr Enlander and his team $1,000,000 for research but I don’t think led to many, or any published studies.
Yes, I had forgot about that. It’s interesting but donors have the most contact with the doctors – so that makes sense – but doctors aren’t trained to be researchers and research is a tough, tough gig: best to give to researchers with established reputations.
Stanford has officially tried to get rid of Dr. Montoya no less than 3 times prior to this termination. They finally succeeded. It is my personal belief, Stanford wants nothing to do with Chronic Fatigue and this clinic will dwindle and close. Dr. Montoya was limited in “how much time” he could practice at the clinic, he was shunned, pressured and “more” by peers at Stanford for studying CFS from the beginning. There are criticisms from all sides about every researcher. Those criticisms aside- My only question- because I know Montoya has the private funding support of many he has helped go from a zero to an 8+- is “where will he go and when will his doors open”?
I think you will be proven wrong. I think the Clinic will continue and hopefully it will get better and hopefully Dr. Montoya will continue to practice as well.
Dr. Montoya’s departure is a loss for all of his patients who were fortunate enough to be treated in his unique clinic – often years to get into it. He is brilliant, unusually dedicated to the field, and singularly compassionate towards his patients, in my experience.
What are these medications Nancy Klimas is studying??
Etanercept and mifeprestone in staggered doses is one.
Dr. Bela Chheda’s name is misspelled 3x herein as Chedda.
Thanks Jeff – will fix.