Article: Straight Talk From Dr. Montoya: the Stanford Hospital CFS Lecture

You can view the page at http://forums.aboutmecfs.org/content.php?381-Straight-Talk-From-Dr-Montoya-Stanford-Hospital-CFS-Herpesvirus-Lecture

 

forwarded the video link to my local ME specialist

Would it be worth a shot to email this video link to all of the socalled ME/CFS specialists in the UK/USA? If we only persuade half a dozen to even watch it , it will at least start to get them thinking

 

Would it be worth a shot to email this video link to all of the socalled ME/CFS specialists in the UK/USA? If we only persuade half a dozen to even watch it , it will at least start to get them thinking

Exactly Clive. He provides a slant on ME/CFS that most physicians/researchers have never thought of....The NIH Workshop will be webcast as well and some people will be talking on the Treatment end; that will be another opportunity to get the word about treating CFS.

 

@pine108kell

With regard to auto-immune diseases and infection, Multiple Sclerosis, which is very similar to ME/CFS, is an auto-immune disease (the immune system, of course, attacks the meylin - fatty sheaths - around the axons of the brain) with links to Epstein-Barr virus, among others. It's treated with anti-virals (amantadine) and interferon (betas), which is essential to fighting viral infections. While I haven't yet seen the video (I'm doing a naughty thing and skimming this article/comments while on the phone w/boyfriend at the moment! It's amazing I can even think/write coherently...or am I?), it sounds like Montoya views ME/CFS very much along the lines of MS.

My best friend has MS. We were diagnosed - with different diseases - at the same time. He was immediately placed on Avonex, a beta interferon, along with amantadine and nortriptyline (tricyclic antidepressant to help with sleep). While he has had a good chunk of damage to his cognitive skills (particularly unfortunate given that he is a PhD candidate), he's managed to adapt with the help of cognitive psychologists (they're only bad if they think they can cure you!) and occupational therapists and is slowly finishing his dissertation. Physically, you would never know he has MS. He works most of the day, 5 days a week. Goes to the gym each day. Went to the Middle East last year to do research. He drove down here to Portland from Seattle (a 3 hour drive) to help me move. While immune modulators and anti-virals have not cured him, he's "practically an Olympic athlete" in his words compared to me, who is mostly bedridden

If Montoya can give us the same options that MS patients have today, BRING IT ON!

What is the difference between MS and CFS? Research, research, research..MS gets about 135 millions a year in research, CFS gets 6 million.

Here's the NIH link about about funding....http://multiple-sclerosis.emedtv.com/multiple-sclerosis/multiple-sclerosis-statistics-p2.html


Here's some interesting stuff on MS

Multiple Sclerosis Statistics on Environmental Impact

The findings of the previously mentioned studies indicate a strong role for an environmental factor in the cause of MS. It is possible that, at the time of or immediately following puberty, patients acquire an infection with a long latency period (the period of time in which the infection is present in the person without producing any noticeable symptoms). Other studies suggest that people of certain races and ethnicities may be more susceptible to the unknown geographic or climatic element.

Periodically, scientists receive reports of MS "clusters." The most famous of these MS "epidemics" took place in the Faeroe Islands north of Scotland in the years following the arrival of British troops during World War II. Despite intense study of this and other clusters, no direct environmental factor has been identified. Likewise, no definitive evidence has been found to link daily stress to MS attacks, although there is evidence that the risk of MS symptoms worsening is greater after acute viral illnesses.

 

pinekell - (I can use the bathroom on my own, make my own breakfast - not without going over my anaerobic threshold, however - but need help to take a bath, cannot drive, must limit use of my laptop in bed & can only read small portions at a time - despite being a PR member longer than almost anybody here, I've not reached the 100 post threshold because I can't post much - can only leave my apartment once a month to go to my dr's office to get my morphine script and my blood clotting time checked after developed blod clots in my lungs 5 years ago -- in other words, I'm seriously disabled).

Its stories like this that make me wonder why researchers aren't foaming at the mouth to get at this illness. What can cause such severe debility? Its a fascinating disease. I believe Montoya will be right and at some point we will get a sincere apology from the medical profession (although I would be happy with more funding at this point )

 

Hi Cort,

although there is evidence that the risk of MS symptoms worsening is greater after acute viral illnesses

And don't forget the studies about the gut involvement in MS. From another thread:

Prevalence of Celiac Disease in Multiple Sclerosis

Luis Rodrigo , Carlos Hernandez-Lahoz , Dolores Fuentes , Noemi Alvarez , Antonio Lopez-Vazquez and Segundo Gonzalez

BMC Neurology 2011, 11:31doi:10.1186/1471-2377-11-31
Published: 7 March 2011

Abstract (provisional)

Background

Celiac disease (CD) is a common systemic disease related to a permanent intolerance to gluten and is often associated with different autoimmune and neurological diseases. Its mean prevalence in the general population is 1-2% worldwide. Our aim was to study the prevalence of celiac disease in a prospective series of Multiple Sclerosis (MS) patients and their first-degree relatives.
Methods

We analyzed the prevalence of serological, histological and genetic CD markers in a series of 72 MS patients and in their 126 first-degree relatives, compared to 123 healthy controls.
Results

Tissue IgA-anti-transglutaminase-2 antibodies were positive in 7 MS patients (10%), compared to 3 healthy controls (2.4%) (p<0.05). OR: 5.33 (CI-95%: 1.074-26.425). No differences were found in HLA-DQ2 markers between MS patients (29%) and controls (26%) (NS). We detected mild or moderate villous atrophy (Marsh III type) in duodenal biopsies, in 8 MS patients (11.1%). We also found a high proportion of CD among first-degree relatives: 23/126 (32%). Several associated diseases were detected, mainly dermatitis 41 (57%) and iron deficiency anemia in 28 (39%) MS patients. We also found in them, an increased frequency of circulating auto-antibodies such as anti-TPO in 19 (26%), ANA in 11 (15%) and AMA in 2 (3%).
Conclusions

We have found an increased prevalence of CD in 8 of the 72 MS patients (11.1%) and also in their first-degree relatives (23/126 [32%]). Therefore, increased efforts aimed at the early detection and dietary treatment of CD, among antibody-positive MS patients, are advisable.

Medscape article: http://www.medscape.com/viewarticle/738740

And this one:

Proinflammatory T-cell responses to gut microbiota promote experimental autoimmune encephalomyelitis
Yun Kyung Leea,1, Juscilene S. Menezesa,1, Yoshinori Umesakib, and Sarkis K. Mazmaniana,2
+ Author Affiliations

aDivision of Biology, California Institute of Technology, Pasadena, CA 91125; and
bYakult Central Institute for Microbiological Research, Tokyo 186-8650, Japan
Edited by Jeffrey I. Gordon, Washington University School of Medicine, St. Louis, MO, and approved June 23, 2010 (received for review January 19, 2010)

Abstract
Although the effects of commensal bacteria on intestinal immune development seem to be profound, it remains speculative whether the gut microbiota influences extraintestinal biological functions. Multiple sclerosis (MS) is a devastating autoimmune disease leading to progressive deterioration of neurological function. Although the cause of MS is unknown, microorganisms seem to be important for the onset and/or progression of disease. However, it is unclear how microbial colonization, either symbiotic or infectious, affects autoimmunity. Herein, we investigate a role for the microbiota during the induction of experimental autoimmune encephalomyelitis (EAE), an animal model for MS. Mice maintained under germ-free conditions develop significantly attenuated EAE compared with conventionally colonized mice. Germ-free animals, induced for EAE, produce lower levels of the proinflammatory cytokines IFN-γ and IL-17A in both the intestine and spinal cord but display a reciprocal increase in CD4+CD25+Foxp3+ regulatory T cells (Tregs). Mechanistically, we show that gut dendritic cells from germ-free animals are reduced in the ability to stimulate proinflammatory T cell responses. Intestinal colonization with segmented filamentous bacteria (SFB) is known to promote IL-17 production in the gut; here, we show that SFBs also induced IL-17Aproducing CD4+ T cells (Th17) in the CNS. Remarkably, germ-free animals harboring SFBs alone developed EAE, showing that gut bacteria can affect neurologic inflammation. These findings reveal that the intestinal microbiota profoundly impacts the balance between pro- and antiinflammatory immune responses during EAE and suggest that modulation of gut bacteria may provide therapeutic targets for extraintestinal inflammatory diseases such as MS.

Glynis x

 

How interesting Glynis - a gut connection in at least some cases of MS and perhaps in autism as well...and in CFS....Wouldn't it be something if its differences in microbial microflora are somehow triggering or contributing to all these disorders.

 

To me, the real power in this talk is Dr. Montoya's honesty. He's clearly communicating to his colleagues in language that doesn't pull any punches. I also think he's speaking to the patient community.

I don't want this thread to get off topic. I have too much respect for Dr. Montoya to do that. I address this topic in a post on another thread: here.

 

Im also interested in immunosupressants. Its totally clear to me that ME/CFS is having a huge impact on my immune system. I feel crap, but i dont get any colds, flu or anything. I feel like an indestructable super hero in a comic, but my weakness is that i am weak and ill all the time.

What with pregnant women often getting alot better while pregnant (while their immune system supresses itself) it seems a dead cert. to me.

Of course, the risk as stated, is that calming the immune system down might lead to whatever infection we have taking a stronger hold, and ultimately killing you even.

Thing is, some people with ME/CFS dont have a super immune system like ours, some people seem to get every illness going. That might be impacting Dr Montoya's results unfortunately. I think its important to look at sub-groups as he seems to be, and as i expect he will in his published paper.

Regarding MS, i have a friend with MS and its no bed of roses, but at least when she says I have MS people take her seriously. I tell people i have ME and I might as well have told them i have the common cold...
I do think there are alot of similarities with ME and MS though. The main difference, seems to be that ultimately with MS your life expendancy is lower than with ME. Though, you do have to question the point of living longer if your suffering.

Thanks Cort, once again for a fantastic article.
Three cheers for Dr. Montoya!

 

I've been hearing such raves about this video that I feel moved to make a transcription of it (even though I haven't actually watched it myself yet!)

Does anyone know Dr. Montoya who could approach him for permission to make and post such a transcription?

 

Im also interested in immunosupressants. Its totally clear to me that ME/CFS is having a huge impact on my immune system. I feel crap, but i dont get any colds, flu or anything. I feel like an indestructable super hero in a comic, but my weakness is that i am weak and ill all the time.

What with pregnant women often getting alot better while pregnant (while their immune system supresses itself) it seems a dead cert. to me.

How long have you been ill? For over 10 years I didn't catch any colds or the flu, but I did have fibromyalgia and later CFS/ME problems. For the past couple of months though, I have been catching all kinds of colds and I took multiple hits of the flu. This scares me... in theory I could be at a point where my immune system is getting weakened and it can't put up a decent fight anymore.

The immunosupressants are tempting, but it's still possible we have an immune deficiency like illness and you wouldn't give people with AIDS (extreme example, I know) immunosupressants I guess...

Also I have read multiple stories of ME/CFS patients that did really well on Prednisone, but when they quit taking that drug, they were a lot worse. Not sure if I want to risk that... getting a lot better and then crashing into the pit of doom again.

 

I've been hearing such raves about this video that I feel moved to make a transcription of it (even though I haven't actually watched it myself yet!)

Does anyone know Dr. Montoya who could approach him for permission to make and post such a transcription?

I have somebody I can ask about that. We really need to find a way to get this video into more doctors and researchers hands.

 

Eek! I'm so sorry for highjacking the thread about Dr. Montoya's wonderful presentation with my only vaguely related comments. However, in response to comments to my comment...

WillowJ said:

one thing to remember about the difference between MS and ME is that in MS, they do not have PEM or the type of channelopathy where muscle weakness is progressive with use. In that regard, we are more like Myasthenia Gravis (which differs from other diseases, besides us which is like, in that the muscles become weaker with use).

Absolutely. Indeed I made that same point in a blog post in September of 2009. Post-exertional malaise is probably the biggest thing that differentiates ME/CFS and ME.

WillowJ continued:

However yes, with proper treatment and support, we should gain a lot of function and do a lot better. I suspect the SF-36 testing showing ME/CFS worse than most all other diseases is at least partly related to being totally (or almost totally, depending on the patient) untreated and generally without assitive devices or any other support.

Last December I spent the night (and most of the next day) in the hospital because of a possible "cardiac event." It took them forever to tease through all my co-morbid conditions to finally decide that no, I wasn't haven't having a heart attack. But what almost all of the physicians who saw me commented on was how surprising it was to see a 38-year-old woman with so many serious health conditions. What I thought -- and should have said! -- was "well, yeah, this is what happens when you leave someone with a seriously debilitating disease to rot in a bedroom with no treatment beyond pain relief."

And yeah, it be nice if my insurance (Medicaid) would pay for a damn wheelchair!

Cort said:

What is the difference between MS and CFS? Research, research, research..MS gets about 135 millions a year in research, CFS gets 6 million.

Yup. Not to mention over 48,000 peer reviewed articles. ME/CFS patients always wave around the 5000 articles (many of them psychogenically based) about CFS, but it's not all that impressive when compared to most other diseases. (AIDS, for example, has 178, 333 articles.)

Cort continued:

Its stories like this that make me wonder why researchers aren't foaming at the mouth to get at this illness. What can cause such severe debility? Its a fascinating disease. I believe Montoya will be right and at some point we will get a sincere apology from the medical profession (although I would be happy with more funding at this point )

I think most researchers -- certainly the CDC -- think people like me don't have CFS but something else that our doctors have not properly diagnosed. Even my own doctor has been moving away from the CFS diagnosis he originally gave me in 2002 because I'm so sick, in so much pain, have so many co-morbid conditions (he's even tested me for Rocky Mountain spotted fever & Reiter's Syndrome!). But, of course, at the end of the day they can't really say what we all have beyond CFS.

Personally? Don't care one iota about an apology. There was probably a time when I did, but now? All I want is TREATMENT!

As for Montoya's presentation, I was particularly pleased to see that he was looking at more than just titers and questionnaires (cytokines, etc). It was also nice to see him focus on SUBGROUPS! Indeed my one question to the CDC wouldn't have anything to do with why they didn't pursue DeFreitas's retrovirus or XMRV or even why they've pissed away tens of millions of dollars on psychobabble. I want to know why the hell they haven't been fricken subgroup-ing ME/CFS patients when I cannot think of one ME/CFS specialist (outside of CDC) who has not said we desperately need to subgroup patients. Even the CDC -- at least in Fukuda -- agreed on the need for subgrouping. Why the hell haven't they?

As he talked about his viral treatments, particularly on the woman he used as his primary example, all I could think of was how it all seems so primitive. We should so be beyond this by now -- way way beyond it.

Loved his comment about how everybody involved in XMRV has got to end the dogmatism. Everybody from Dr Judy to Greg Towers. From the XMRV cheerleaders to ERV. Though he did seem to exude a sense of confidence in the involvement of XMRV that I found a bit surprising.

Lastly, after a quick skim of the Stanford site, I really like it. It actually looks like something to which I feel comfortable referring my doctor.

 

I have somebody I can ask about that. We really need to find a way to get this video into more doctors and researchers hands.

I would be so happy for a full transcription of the talk, if anyone could produce one! Thanks to everyone for getting this information around (thanks Cort for a great overview).

 

How long have you been ill?

Compared to many on these forums, not long. Since 2006/7 i would say. Its hard to be sure exactly when. I was diagnosed June 09.
I have had one mild cold in that time, and it was the most well i have felt over that whole period. When i meet someone with a stinking cold i give them a hug and a kiss! Just wish i could catch it.

Did you have any improvement in your ME/CFS when you got cold/flu?

I agree it would perhaps be reckless to try these drugs without serious consideration and research. I think in my position (severely effected by the illness but not bed riden) its probably not worth the risk. But if i was much more ill i think i would give it stronger consideration.

 

Did you have any improvement in your ME/CFS when you got cold/flu?

No, I felt a lot worse! Getting better now and my health is returning to "just" ME/CFS. It's a lot better than ME/CFS + regular flu though...

 

Last December I spent the night (and most of the next day) in the hospital because of a possible "cardiac event." It took them forever to tease through all my co-morbid conditions to finally decide that no, I wasn't haven't having a heart attack. But what almost all of the physicians who saw me commented on was how surprising it was to see a 38-year-old woman with so many serious health conditions. What I thought -- and should have said! -- was "well, yeah, this is what happens when you leave someone with a seriously debilitating disease to rot in a bedroom with no treatment beyond pain relief."

And yeah, it be nice if my insurance (Medicaid) would pay for a damn wheelchair!

no kidding. sorry you've had a rough go. (as we most all have, but still, it's always saddening to hear another story, wish you didn't have to go through stuff like that)

ME/CFS patients always wave around the 5000 articles (many of them psychogenically based) about CFS, but it's not all that impressive when compared to most other diseases. (AIDS, for example, has 178, 333 articles.)

It's true that the amount of research is comparatively tiny. And, perhaps worse, we're basically stuck on arguing, "yes this abnormality (such as low NK cell function) really does exist" rather than getting further and exploring why it exists and what else it interacts with and how to treat it.

But I'm quite sure the 4K/5K figure counts only those articles which show a biomedical abnormality (even if the researchers had a psychogenic bias, they sometimes do find a biomedical abnormality). Otherwise Dr. Komaroff would have had no occasion to cite that figure to support his statement (which was in 2000, I believe, and surely there have been 1K since then, which is probably where the 5K comes from, maybe someone counted) that there was plenty of evidence to support the biomedical model (and therefore to abandon the psychogenic/psychoperpetuative one).

 

I'm interested in the autoimmune angle as well. I had a lip biopsy performed a few years back which was positive for Sjogren's even though my blood test was negative for the Sjogren's antibodies. Also, I have moderate psoriasis. However, my main symptoms have always been PEM and other neurological symptoms (had elevated proteins per spinal tap).

Rheumatologist said he would prescribe a medication like Humira for the psoriasis if I wanted to go that route. I said that the psoriasis isn't what I'm concerned about and didn't want to take an immunosupressant. Now, I'm thinking that maybe I should just try it to see if it would help with the fatigue.

Of course I get the fibromyalgia label since there are no CFS doctors around here.

 

maverick~ For me, I would not take any immunosuppressants. I think that is what started my problems....a steroid shot to my knee. Which in hindsight, likely reactivated a bacterial pathogen (such as borrelia burgdorferi) that was hiding out in the knee joint, then the viruses reactivated in me.

Best, Timaca

 

first 2 minutes of his talk (errors are all mine, including [unintelligible] parts)

Good Evening. Thank you, [unintelligible], for making possible this evening's [unintelligible].

Chronic Fatigue Syndrome is arguably one of the most controverted, misunderstood, misperceived fields in medicine today. Although it is feared that the health of millions of people have been compromised significantly by this disease, still in medicine we face situations where an extreme, even in our own medical community, disease is not believed that it is real, which is a shame.

But the one thing, there is one thing of anyone in this audience here, today, that I would like to have as a point to take home, of your family members, your friends, or yourself, is to not kid yourself--this is a real disease.

And what I would like to do tonight, is share with you the evolving understanding that for example, we have put together, what we tell you today may not be true tomorrow. But what we tell you today, hopefully, is better than what we had [unintelligible] or [unintelligible] yesterday. And it is evolving--it's changing.

But we have, a simple goal, is one day--one day--have CFS a history of the past. So we do want one day be able to conquer the disease and be able to bring relief finally to the many patients who are suffering. I do not have the timeframe for this, but, trust me, we are working hard at making that timeframe the shortest possible.

 

wait... were we supposed to get permission in order to do that? I think maybe 2 minute is okay without (and that's all I could manage just now anyway), but I won't do any more unless hearing it's ok.