Reprinted with the kind permission of Cort Johnson and Health Rising
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Pre-Conference ‘Conference’ – Stanford ME/CFS Symposium, Wednesday, March 19th
The pre-conference Symposium is chock-full of interesting presentations from Stanford faculty including one on a ‘novel inflammatory and autoimmune’ signature.
Stanford’s Chronic Fatigue Symposium bears notice for a couple of reasons.
A) The fact that one of the top medical schools in the country is producing a symposium on chronic fatigue syndrome is startling and encouraging.
B) The fact that the Symposium mostly consists of Stanford Researchers presenting their own findings indicates how quickly and effectively Dr. Montoya has managed to get other faculty members engaged in ME/CFS. Getting the best and the brightest engaged in ME/CFS research is not a bad thing at all.
The Symposium will feature talks from seven different Stanford researchers on a broad range of topics including daily cytokine fluctuations, gene expression findings, cardiovascular ‘aging’, MRI findings, EEG studies and then from Dr. Montoya on cytokine findings that reveal ‘a novel inflammatory and autoimmune profile’. Patients can attend the Symposium by registering as ‘Allied Health Professionals’.
Congratulations to Dr. Montoya for moving so far with ME/CFS at Stanford.
IACFS Patient Conference – Thurs, March 20th
One of the stronger Patient Conferences occurs on March 20th. Dr. Lipkin will talk on “Small Game Hunting” a subject he will reprise in the professional sections of the conference. Dr. Komaroff’s talk on “New Developments in the Possible Causes of ME/CFS” will certainly feature VanElzakker’s Vagus Nerve Infection Hypothesis which he has taken a strong interest in. Hopefully we’ll learn more about his and Van Elzakker’s attempts to begin a study to assess the hypothesis.
Dr. Friedberg, a person of ME/CFS who knows of what he speaks, will talk on coping, a important (if not particularly compelling :)) subject as we wait for more answers to ME/CFS.
Dr. Lapp will speak on medications for ME/CFS and Dr. Montoya and then Dr. Klimas, in what should be a couple of very interesting sections, will talk on antivirals and immune modulators.
Talks on severely ill patients (Dr. Lapp), activity management (Staci Stevens), pacing, etc. (Bruce Campbell) and a Fibromyalgia Update by Dr. Bateman bring us up to the first best-selling author ever to present at an IACFS/ME Conference. Dr Abraham Verghese (author of “Cutting for Stone”) will talk on “The Physician-Patient Relationship in the Genomic Era”.
IACFS Professional Conference Thursday, March 20th – Workshops
Workshops start off the conference.
Appearing in his first ME/CFS conference, Dr. Ian Lipkin is going to start off a day of workshops by talking on ‘Small Game Hunting” which probably refers to the microbiome in the gut. You may remember that the gut is where he believes ‘the action’ is in ME/CFS. Several interesting gut studies will be presented at the conference.
Dr. Peterson will do a workshop on Immunology while Stephen Krafchick talks on legal issues, and Workwell group speaks on exercise intolerance and how to manage and treat it. Meanwhile Faith Newton will translate science into the classroom for clinicians, patients and educators.
In the afternoon Dr. Lapp is going to take on the difficult job of explaining how to treat the severely ill. While he’s doing that Dr. Peter Rowe will cover diagnosing and treating orthostatic intolerance. Dr. Jason and Dr. Freidberg will focus on behaviorally assessing and treating ME/CFS, and Kathy Rowe will talk on how to translate pediatric research into treatment options.
Friday March 21st
This session will be lead by none other than Dr. Noel Rose, the Director of the Center for Autoimmune Research at Johns Hopkins University. How he came to present at this conference is probably a story in itself. but simply having Directors of major medical centers leading sessions at an ME/CFS Conference can only be good news. A Director of Autoimmune Studies at Johns Hopkins will oversee the immune session.
Dr. Lipkin reported that he found dramatic differences in immune parameters between people who’d had ME/CFS less than three years and more than three years. He will flesh out the increased allergic response he found early in the disease. This finding could open new windows for understanding how chronic fatigue syndrome turns into a chronic illness.
Betsy Keller of Ithaca will take the floor to report on cytokine results after cardiopulmonary exercise test; a positive report (crossing fingers) would be very helpful in establishing why post-exertional malaise happens, and it would fit with Dr. Klimas’s finding that the autonomic nervous system triggers the immune system during exercise to produce the symptoms of ME/CFS.
The NCNED team from Australia will be digging deep into why NK cells fail in ME/CFS in two presentations, and in maybe the most intriguing presentation of the morning the CDC team is going to report on its genome-wide analysis of methylation.
Dr. Montoya leads off what’s going to be a very interesting pathogen section with Dr. Chia presenting both on the pelvic pain and enterovirus infection of the ovarian tubes in ME/CFS and on stomach infection. Dr. Chia has expressed concern about Dr. Lipkin’s results, and others (including the creators of the test) have expressed concern about test the Dr. Chia used (immunoperoxidase) to identify enteroviruses in tissues.
Dr. Peterson will moderate a short treatment section that focuses on several mind-body practices and midodrine. One of the treatment talks will feature ‘isometric’ yoga and ME/CFS.
We will find out if a home-based management program for severe ME/CFS is very helpful. Wan Tiang Fang will come all the way from China to talk about Baduanjin exercise in people with ‘fatigue-predominant sub-health’, whatever that means.
Given Dan Moricoli’s stunning progress using rigorous pacing, ‘exercise’ and yoga to take him from basket-case to impaired but now working doing the effect of isometric yoga on ME/CFS study could be quite interesting. Dan’s of the opinion that most yoga is not taught in a manner that works for chronic fatigue syndrome. We’ll be doing an overview of Dan’s excellent yoga video series soon.
One of the most interesting sections of IACFS/ME conferences is the diagnosing section where ME/CFS experts (Klimas, Lapp, Bateman, Vallings, Peterson) are given really difficult cases and are asked how they would diagnose them. This year it’s a 2 hour session.
Saturday, March 22nd
Dr. Jason’s comparison of case definitions will no doubt provide significant information for the work going on in an area that’s increased in importance since the IOM contract began.
Public Health Sessions
The CDC multi-site ME/CFS expert study appears to dominate the second of the two public health sections with presentations on ‘natural course’ (how the illness progresses over time), what treatments help (!), and what co-morbid and ‘consequent’ conditions pop up over time. (I say appears because the CDC is not actually mentioned in the presentation titles, but what other multi-site study is going on?)
These should all show up as studies at some point, and the treatment study will both be fascinating and important. The big medical websites and most doctors now pretty much follow the CDC’s guidelines on treating ME/CFS. Those guidelines should change when CDC studies show that B-12 or an antiviral or an orthostatic drug works for experienced ME/CFS physicians. These studies will hopefully translate to more treatment options for ME/CFS patients not able to see ME/CFS experts. The CDC’s multi-site study appears to feature strongly in the Public Health section.
The impact of the CDC’s ME/CFS expert doctors study on our understanding of the basic aspects of chronic fatigue syndrome such as what it is, how debilitating is, how it progresses over time, how it can be successfully treated, how heterogeneous it is, etc. should be large.
We haven’t seen any papers from the CDC on the multi-site study that’s been going on for several years. In fact the CDC CFS research team is overdue for publication; the last research paper was on heart rate variability in stationary environments in 2012 (hardly a game-changer) and a few more papers on genetic factors make up most of their activity dating back to 2008. Most of their efforts now appear to be going to this big study and the papers will hopefully start pouring out soon.
A ‘family aggregation’ (???) study from a prolific Spanish team will presumably present on how often ME/CFS runs in families. An earlier study found high, high rates of family associated illness in ME/CFS (and fibromyalgia) relative to most other disorders. A finding of strong heritability would suggest, of course, a strong genetic component to ME/CFS, and possibly provide targets for therapy.
’Provocation’ Studies Session
An aptly named ‘Provocation Studies’ section will feature exercise testing. For the first time, I believe, every researcher/research group that has done repeat exercise testing on chronic fatigue syndrome will present. Could poor ventilation in the lungs be contributing to the exercise problems in ME/CFS?
Dr. Keller of Ithaca College will follow up her cytokine results after exercise by demonstrating how much more effective two-day exercise testing is compared to other tests at demonstrating ‘functional impairment’.
Workwell (formerly Pacific Fatigue Lab) has been digging deeper into what’s causing the exercise problems in ME/CFS. Dr. Van Ness will talk on how diminished ventilation (the ability to move air in and out of the lungs) may play a key role in the exercise problems. (If memory serves they believe oxidative stress may be whacking the very active muscles that move the lungs).
In an intriguing presentation Vermoulen from France will show that oxygen uptake and lactate (uptake?) are low during exercise testing. Low oxygen uptake during exercise has been observed by several researchers; it could explain a lot, and if Vermoulen is talking about low lactate removal, that would seem to fit in with Dr. Newton’s findings. (If he’s not it would seem not to. We’ll see!). It’s good to see that Vermoulen is still engaged in ME/CFS.
A British Columbia team will hopefully lay to rest the idea that submaximal exercise tests tell us anything significant about ME/CFS.
Sunday March 23rd
Dr. Peter Rowe will present on his fascinating finding that impaired range of motion in muscles is causing fatigue, pain, brain fog, etc., in many adolescents with ME/CFS. The problem appears to be that the nerves are being blocked from lengthening as they should during movement. That could cause everything from muscle pain to immune problems to brain fog. Rowe’s finding that simply lifting up and supporting a leg for a few minutes causes extreme symptoms in some people with ME/CFS has got to count as one of the jaw-droppers in ME/CFS history. My guess is that Dr. Rowe is on the mark with this. Dr. Rowes studies are revealing an unusual inability to flex the muscle without causing pain and even brain fog in some adolescents.
In what might be one of the most overdue findings in ME/CFS, Dr. Rowe is also going to show that milk allergy/hypersensitivity is present in many. Hopefully the word will get out to watch the milk (and then watch the gluten).
The Broderick/Klimas/Fletcher team is going to show that a simple lab test (probably using gene expression markers?) can track how people with post-viral fatigue are doing. This sounds like it’s from their Good Day/Bad Day test. (Can anyone say biomarkers? Dr. Klimas has said we’re (she’s) getting closer for years.)
Asking sleep education to prevent adolescents from missing school seems like a lot to ask from that technique, but a Japanese presentation appears to suggest just that.
The big news in the brain section is probably the EEG study coming out of Stanford. It involves cortical hypoactivation (i.e., lower than normal activation of the brain) particularly in the subcortical areas. These are the areas such as the thalamus, hypothalamus, cerebellum, and other organs that make up the brainstem, and they specialize in producing fast, subconscious reactions. This could be huge.
This may be just the beginning from the Stanford team, though. Dr. Marcie Zinn has said they’re going ‘well beyond’ EEG and are using advanced LORETA methods, SnPM, and other new analytic techniques. Stanford neuroscientists are apparently very engaged in ME/CFS! We’ve always thought that new technology will lead the way.
As is customary Dr. Komaroff will end the conference with a summary.
Early Registration Ends January 30th. For cheaper tickets register now. Click HERE.
About the Author: Cort Johnson has had ME/CFS for over 30 years. The founder of Phoenix Rising and Health Rising, Cort has contributed hundreds of blogs on chronic fatigue syndrome, fibromyalgia and their allied disorders over the past 10 years. Find more of Cort’s and other bloggers’ work at Health Rising.