Discussion in 'Fibromyalgia Main Forum' started by acer2000, Mar 14, 2009.
So the CFS conference is this weekend I think? Anyone at the conference care to post updates?
conference is 3/12 13 14 and 15. So I'm sure it will be a few days yet. I wonder who the keynote speaker was. I had thought maybe Dr. Montoya and we would finally get something on the Valcyte trial.
Here's the info that I copied from CFIDS facebook page. They put a summary after each day:
Although today's presentations were not peer-reviewed, and therefore the content didn't have to pass "muster" with any authoritative group, I thought you might like to read a few tidbits shared by those who took the podium today (Thursday). I present them here in no particular order, from my notes. I tend to think in "threes" so you'll notice that grouping:
- Subgrouping patients by symptom clusters and positive findings (infection, autonomic problems, etc.) is the way forward for CFS and will help to make treatment more effective
- Evidence pointing to problems with energy metabolism is "hot" again
- Infections with viruses and other agents (like Lyme) are important, but the science is still not "mature"; tissue culture tests are more meaningful than antibody tests, but are harder to get done well
- Learning how to find your "energy envelope" is one of the most important coping strategies you can employ in living better with CFS
- Although it's tough to do, resetting expectations for what activities you can manage is an important aspect of healing
- Finding low-energy enjoyable activities can contribute to an improved sense of well-being
- Try very, very low doses of the drugs recently approved for fibromyalgia pain (Cymbalta, Lyrica and Savella); most CFS patients can't tolerate the doses used for patients with FM only
- High dose vitamin C (4000 mg per day) and CoQ10 (100 mg per day) can be helpful for relieving fatigue and brain fog
- Almost every patient will find some benefit to regular massage therapy -- if you can afford it!
- There are lots of opportunities for patients to participate in research. Check www.clinicaltrials.gov.
- Many of the imaging techniques being used in CFS studies right now (MRI, SPECT, MRS, fMRI, PET, CT) are still only useful in research and individual patients should not seek a certain doctor just because they can order these studies -- it's still too early to know what they mean for you
- Genomics, microarray studies, Genome Wide Association Studies and newer imaging techinques all hold tremendous promise in uncovering more useful information for the diagnosis and treatment of CFS
Real world advice:
- "You are still the same wonderful person you used to be before you got sick!" -- Dr. Gudrun Lange
- "Every person in this room can get better" -- Dr. Nancy Klimas
- "Don't drive in rush hour traffic!" -- Dr. Gudrun Lange
Reporting in from Day Two of the IACFS/ME conference, the hour is late and the day was long (again, imagine that!). Today (Friday) was the first of three days of the research/clinical conference. The goal of the sessions conducted today through Sunday is to present the latest data on research being conducted in CFS. About 180 people registered for the meeting and for most of the day, the large ballroom was full. Many patients stayed over from yesterday’s patient conference, determined to push through exhaustion and brain fog to hear the latest data from the researchers themselves. Some stayed just to soak in a sense of progress and camaraderie.
In addition to research groups from across the U.S., today research was presented from investigators in Barcelona, Spain; London, England, Recife, Brazil; Sydney Australia; Oslo, Norway; Bergen, Norway; Osaka, Japan; Auckland, New Zealand; and Brussels, Belgium. CFS is truly a worldwide public health concern.
The morning session began with an elegant overview from Dr. Yasuyoshi Watanabe of his team’s research in Japan. The presentations that followed, on the broad topic of pharmacologic and non-pharmacologic treatment advances, generally agreed that cognitive behavioral therapy was not a cure-all, but could provide some relief if the patient and practitioner had similar goals and expectations. There was some initially promising data offered on isoprinosine, although it’s not available in the U.S., but can be ordered from Canada or Europe with a prescription. EMDR performed by a licensed practitioner also provided some benefit. Xyrem (sodium oxibate) was shown in one trial to be effective in reducing alpha-wave intrusion during sleep and restoring restful sleep.
Epidemiology studies followed the lunch break. Infections with Q-fever (coxiella burnetti), giardia and parvovirus B19 were shown to lead to persistent CFS-like symptoms in a subset of patients. Repetitive stress injury was shown to correlate with CFS symptoms in a group of bank workers in Brazil. Death rates among CFS patients were the same as the rest of the patients in one doctor’s New Zealand medical practice – good news, I suppose.
In the short session on neuroendocrine advances, two investigators funded by the CFIDS Association presented data. Dr. Alan Light’s presentation on a set of adrenegeric and sensory receptors following mild exercise brought a collective “Ahhhhh” from the room when he showed charts clearly distinguishing CFS from matched healthy controls and MS patients. Dr. Klimas’s group at University of Miami showed some data that neuropeptide Y correlates with symptom severity.
The program ended today with an address from John Kitzhaber, M.D., the former governor of Oregon. Dr. Kitzhaber presented his ideas for a transformational overhaul of the entire health care system, incorporating humor and a heavy dose of reality into his talk. His ideas and his delivery were met with a standing ovation from attendees.
The format today followed the same schedule as yesterday’s session: 11-minute data presentations grouped by broad topic were followed by a Q&A wrap-up of those speakers, each of whom was asked to respond to two or three questions submitted from the audience on notecards. While this helps move the agenda along and spreads questions more evenly among the speakers, we’ve found something missing in the ability for questioner and answerer to offer clarifying points and provide more challenge to the data being presented. It’s also not possible to know what questions asked were not answered, as the speaker can choose among more questions than he or she will have time answer.
Breaks occur roughly every two hours, but there is little time between sessions to do more than attend to bodily needs. Like most casino venues, there’s no way to tell from inside the hotel whether it’s light out or dark, sunny or raining. In fact, by day three Suzanne and I both feel like we’re suffering from Induced Seasonal Affective Disorder. I can’t imagine how the CFS patients attending are holding up. The room is noticeably less well populated today, particularly this afternoon.
Enough with setting the scene! Today’s sessions so far have covered: Difficult Clinical Cases Discussed; Immunology; Assessment Issues from Biological to Behavioral; and the current session on Pediatric ME/CFS. Speakers have hailed from several cities across the U.S. and the following international locations: Stockholm, Sweden; Brussels, Belgium; Riga, Latvia; Queensland, Australia; Edmonton, Alberta; Woodville, Australia; Oxford, England; Edegem, Brussels; Bristol, England; and Osaka City, Japan.
There has been repeated discussion of the apparent inability of CFS patients to appropriately produce energy at the cellular level. This issue has popped up from time-to-time in the past, but it seems to be particularly “hot” at this meeting. Like the meeting two years ago in Ft. Lauderdale, the role of viruses and other infectious agents has been a frequent topic, with studies of various herpesviruses (Epstein-Barr virus, HHV-6A, HHV-6B, and HHV-7) and parvovirus B19 specifically. The range of findings still suggests that the ability of the human host to respond to infection may be more relevant than the type of infection, but the answer likely lies somewhere in the interface between the two. Related to this, the difficulty of obtaining reliable tests to measure for active versus latent virus limits clinical utility and the ability to develop appropriate treatment strategies. There were no new studies presented about the use of Valcyte (valganciclovir) to treat active HHV-6 and EBV infection, as many onsite here had hoped. During the first morning session on tough cases, the expert clinicians agreed that it is still too soon to tell whether Valcyte will turn out to be “worth” the $2,800/month that most patients would have to pay out-of-pocket for the drug.
Three investigators funded by the CFIDS Association of America presented studies today. Christopher Snell and Mark VanNess from University of Pacific provided data from a study of post-exertional relapse using a test-retest exercise challenge. Dr. Snell reported that a test of immune function, RNaseL, shown in earlier studies by Robert Suhadonik and others to be abnormal, was not useful in distinguishing between CFS subjects and normal controls. Dr. VanNess reported that only a subset of CFS patients was able to reproduce performance during exercise challenge when tested at baseline and 24 hours later. This was somewhat disappointing, because pilot studies of a few patients had shown all CFS subjects to have dramatically different performance on the first day when compared to test results a day after the initial test. This test may still be useful in establishing vocational disability, but it’s lucky that it hasn’t been made a requirement as some suggested after pilot studies were reported.
Dr. Gordon Broderick of University of Alberta also offered results from a study using exercise challenge to identify immune signals characteristic of CFS/Gulf War Illness. Although the funding for this particular study is from another source, Dr. Broderick’s novel means of exploring complex data sets was well-received by the audience. His conclusion was that the GWI subjects tested (whose symptoms are almost indistinguishable from CFS) demonstrated significantly different neuroendocrine-immune markers after exercise challenge.
The session on pediatric CFS currently under way underscores that kids do get CFS and it’s often more difficult to establish the diagnosis than in adults, partially due to the lack of awareness among providers who treat children about the condition and diagnostic criteria developed for youth. It may also be due to the varying presentation of symptoms in kids compared to adults. Kids with CFS miss quite a lot of school and miss out on many important social and emotional experiences due to illness.
Hate to be cold, but they still don't know anything, do they???
lack of funds for research.
thanks for posting
this is good information
even though there is no "cure" I think it helps to
work with a specialist who is knowledgeable about cfs
Many medical conditions don't have a "cure" but their symptoms can be managed.
One example is diabetes.
[This Message was Edited on 03/16/2009]
I was hoping Dr. Kerr or Dr. Nancy Klimas would have updated on their progress.
there was supposed to be something on ampligen and isoprinosine just hold your horses
"- "Every person in this room can get better" -- Dr. Nancy Klimas"
So... any more details on this statement? I'd sure like to get better?
You know what I hate so much about this illness? It's the fact that although they have new, logic and scientific based theories on cause and treatment it never can be confirmed through studies. The first study with only a few patients most of the time seems promising but then when they conduct a bigger one it nearly all of the time fails to confirm the first one. Why is this? Why does this illness have to be so complex?
I'm quite sure that the cause for CFS is very hard to find because of its small size (maybe genetic level?) and the problems of finding it OR because there is an interaction between something that is not understood yet.
Why are there so many types of CFS/FM etc., do we all have the same illness and does it only cause different symptoms because we as humans are different or do we maybe have a root cause that only evolves into different other illnesses/symptoms?
Medicine is an exploding universe and with more and more people (+scientists/doctors) living on this planet and the high density of computers/high tech/new diagnostics I'm quite sure that within the next few years we dig on sth. big!
The final day's morning session delivered one overview and seven new studies on Research Developments in Genetics. Cutting-edge approaches like gene polymorphism studies, microRNA expression, genome-wide association studies were combined with other sources of biological data, such as viral titers and cytokine levels. Clinical information about symptom severity, duration of illness and onset type, was added to build new “fingerprints” for CFS. While each of the seven studies used different techniques, platforms and case selection/subgrouping criteria, it seems reasonable to expect that there will be continued progress to help identify CFS-specific abnormalities, as well as contribute to hypothesis generation and testing in other approaches to research. After the individual presentations, Dr. Klimas stimulated the panel with a recommendation for all the groups working in this field to share data and agree upon some common practices to make results more comparable. This generated considerable discussion and some debate; however, there was agreement that more collaboration would enhance ongoing and new studies. Apparent during the discussion was the different perspectives held by the groups studying genetics in post-infection CFS. The group from Australia reported that regardless of the agent that causes in the initial acute illness, “the patients look more alike than different” (Andrew Lloyd). However, the group from London believes that the type of infection will lead to different immune response signatures (Jonathan Kerr).
A short but interesting session on the brain and cognitive function followed. A most intriguing study from Harvard showed that rigorously selected CFS patients were clearly distinguishable from depressed and healthy controls using spectral coherence EEG data. Presenter Frank Duffy, MD, concluded, “These data are in accord with much previously reported data indicating that CFS is a condition that causes objective, measurable perturbations in central nervous system function.” He suggested that if replicated, these EEG data in combination with other brain imaging techniques might be diagnostic for CFS. A study of adult cognitive performance by Elke Van Hoof of Brussels showed slow processing speed, as has been reported by several other groups, lower performance on tasks which require complex processing, and CFS subjects’ need for more time to complete reaction-time related tasks. Reporting results from an Australian study of adolescent and young adult CFS patients, Laura Younis found that subjects had similar performance to healthy control subjects; however, she suggested that the laboratory setting and patients’ motivation to do well on the test might not make it an appropriate surrogate of cognitive performance on day-to-day tasks. Dr. Dikoma Shungu, another of the Association’s funded investigators, reported the negative results of a comparison of GABA levels in the brains of CFS patients compared to healthy controls and depressed subjects. His group’s work continues, using magnetic resonance spectroscopy to identify useful biomarkers of brain chemistry in CFS.
The final session of the day was dedicated to the group of Japanese researchers working under the impressive leadership of Dr. Yasuyoshi Watanabe at his centers in Osaka and Kobe. They made five presentations on their guiding model of CFS and fatigue as a “bioalarm” similar to fever. They also reported on foods identified to have anti-fatigue properties, nutritional approaches to combat fatigue, measures of autonomic dysfunction, and the pathophysiology of CFS in children. They reported the following to be helpful:
- CoEnzyme Q10, a nutritional supplement that may help with energy metabolism
- Applephenon, an extract from unripened apples
- Imidazole dipeptide, an extract found in animal muscle that is available in Japan in a beverage called CBEX Drink (for “chicken breast extract” drink – yummy!)
- Crocetin, a substance obtained from crocus flowers
- Bathing in a “micro bubble” streaming bath with water that streams from the ankles to the trunk while sitting in a position that submerges the shoulders and arms, knees bent
- Combining rice with omega-3-rich fishes
- Supplements of zinc, copper, manganese, and vitamins B6 and B12
- Maintaining a normal biological rhythm by avoiding bright light after midnight and restoring a healthy sleep/wake cycle that follows night/day (especially important in children)
Harvard’s Dr. Anthony Komaroff delivered a 45-minute summary of the presentations he felt were most significant of the 170 studies presented in oral or poster form over the three-day research program. He broke the highlights into these eight topic areas:
- Diagnostics and biomarkers
- Post-infectious fatigue studies
- Infectious agents
- Role of stress
- Links to other diseases
- The Brain
I look forward to Tony’s summary at every meeting and a few years ago began trying to predict how he would frame the overview. My topics lined up closely:
- The Brain
- Testing CFS patients under challenge (exercise or another stressor)
- Triggering agents
- Subgrouping by biological measures
- Mitochondrial dysfunction
- Balancing the sympathetic and parasympathetic functions of the nervous system
Outgoing IACFS/ME president Nancy Klimas indicated that Tony’s summary will be posted to their website, although she did specify a date by which that would happen. We’ll keep you posted. When I have revived a bit from attending the meeting, I will share an overview by the six “highlight” themes I observed during the conference.
I hope these reports and the photos have given you an adequate sense of the meeting and that you’ve enjoyed the Facebook connection to the action in Reno. Each time I attend a meeting like this, I am humbled by the honor to represent those who can’t participate in person. Suzanne shares that feeling. I’ve enjoyed sharing my observations and trying to impart a flavor of the meeting and organized social activities through the Association’s Facebook profile.
Stay tuned for more from Charlotte and other points as the Association continues working to solve CFS!
March 15, 2009
From the Phoenix airport, during a layover on my way home
Why no info on the WP Institute's research, or Ampligen? I appreciate that the CFIDS people are doing *some* coverage, but it seems selective, to put it nicely.
Does anyone know where we can find out what REALLY went down at the conference?
I'm surprised that neither Montoya nor Lerner were there to present on their work with antivirals.
After years of no news from a conference, I know doctors hate to waste time on their presentation. Using the same one over. and over is the way it has been for years. The doctors do talk a lot about their work in their circle of friends. That is where the real action is.
The information and real studies can be found in the Nation Forum ncf-net.org They pay no staff, and do not work for NIH or CDC. They fund research with donations.
[This Message was Edited on 03/16/2009]
I think the reason that it failed to show much the second time around has something to do with a concern I voiced when the original research was published....the test is too short for many of us. There are some of us who definitely have PEM, but need more than 8 - 12 minutes of exercise for it to show up...not a lot more, but more nonetheless....and I would guess that there are others like me who sometimes take two days to really feel the PEM, rather than one. If I overdo it today, I might not feel the PEM from it until the day after tomorrow, but I will always feel it. I wish that they would do the test to each patient's own level of exhaustion, rather than the amt they did it for, and extend the retest to two days for those with whom they do not see a difference on the initial retest. They would almost certainly get better results that way.
[This Message was Edited on 03/16/2009]
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