Wednesday, 02 April 2014 22:23 Last Updated on Tuesday, 05 August 2014 22:52
Resources - CONFERENCES
IACFS/ME 11th International Research & Clinical Conference
March 20th to 23rd, 2014 San Francisco, CA
Translating Science into Clinical Care
2014 STANFORD MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME SYMPOSIUM - Advances in Clinical Care and Translational Research, March 19, 2014
A one day symposium was held at Stanford University prior to the IACFS/ME Conference. A summary is provided by Dr Rosamund Vallngs:
Videos of the presentations are available online. Follow this link:
IACFS/ME 11th International Research & Clinical Conference - Translating Science into Clinical Care, March 20th to 23rd, 2014 San Francisco, CA
You can watch the video of Dr Anthony Komaroff's summary of the biological findings, posted by the CFIDS Association of America at:
A written transcript of this presentation is here
The Conference summary by Rosamund Vallings
The following are highlights of the conference as reported from a member attending.
IACFS/ME Patient Day
The conference opened with a welcome message from Dr. Montoya of Stanford University. His enthusiasm and optimism are inspirational. His leadership on the Stanford multi-disciplinary research team brings a high degree of prominence to the research efforts.
Dr. Ian Lipkin, a leading expert in microbial research is committed to finding pathogens involved in ME/CFS. When he talks you get an understanding of the complexities of trying to find agents that may or may not trigger a complex array of symptoms and conditions. Yet he too is optimistic.
Dr. Anthony Komaroff reviewed evidence of underlying abnormalities in the brain, immune system, energy metabolism, oxidative and nitrositive stress as well as infectious triggers. Some studies in antiviral drugs have shown modest results. Some experiments are being done with drugs indicated for fibromyalgia.
Drs Fred Friedberg and Leonard Jason spoke on coping methods covering the topics of balancing activity and rest, reducing stress, positivity, support, relaxation techniques, better sleep, resolving anger, minimizing expectations of support and pacing. Dr Freidberg added some humour to his presentation and told of one jogger who said to another "I start slow and taper off from there". Dr Jason spoke on managing your energy envelope and stated that studies have shown improvements over time in fatigue severity, symptoms and physical functioning.
Dr Charles Lapp spoke on pharmacological and non pharmacological treatments of sleep and pain and symptom management.
Dr Montoya spoke on anti-virals. Some patients may be candidates for antiviral drugs after conducting tests for antibodies but it is difficult to determine who will respond to them. Some positive results have been shown when administered over a long period.
Dr Nancy Klimas talked about research on immunomodulators and her studies on exercise response.
Stacie Stevens stated that there is a biological basis for activity intolerance. Her presentation covered identifying activity coping style, determining anaerobic threshold, using a heart rate monitor and abdominal breathing.
Bruce Campbell also spoke on self management strategies and pacing and Lucinda Bateman covered the current status on treating and managing fibromyalgia. She stated that awareness of FM has skyrocketed since the FDA approval of 3 drugs for the treatment of fibromyalgia.
An encouraging presentation was given by Dr. Jarred Younger from the Stanford research team. There is increase scientific interest in fibromyalgia as evidenced by the increased number of research papers. He maintains that there is not one fibromyalgia but many types and treatment approaches will differ for different types. He is doing research on microglia activation (microglia induce a sickness response) and many drugs in early stages of testing. Dr Younger believes there is a strong overlap between fibromyalgia and ME/CFS and he believes there will be convergence in the research (though not all researchers concur).
The keynote speaker, Dr Abraham Verghese, professor and best-selling author, encouraged a hands-on approach to medicine.
IACFS/ME Conference Day 2
The opening speaker was Dr. Noel Rose who gave a presentation on "How do we recognize an autoimmune disease?”. Dr. Rose is the director of the Center for Autoimmune Research at Johns Hopkins School of Medicine. He is a very eloquent speaker and very knowledgeable in autoimmunity.
He did not talk about CFS but about autoimmunity and what it is. Three contributing elements in autoimmunity are genetic predisposition, environmental factors and endocrine effect. When asked why autoimmunity is more prevalent in women, he replied that hormones play a significant role. It is not clear whether or not ME/CFS is an autoimmune disease, but the message was that it might be.
The next 2 session covered "The Latest Research in Immunology" and "Virology Research". While the details were scientific in nature the conclusions were that there were significant findings that warranted further research.
Nicole Baldwin presented a study on the treatment of orthostatic intolerance (OI) using midodrine in patients with CFS. Results showed small but significant improvements. This is a pilot study and future studies are required.
Other studies that showed measurable improvements in fatigue and functionality were Ba Duan Jin (a traditional Chinese qigong exercise), Isometric Yoga (sitting version) and home based self management.
The afternoon session was very interesting to observe. It was titled "Diagnosing CFS/ME; Difficult Clinical Cases" . The panel consisted of Dr Nancy Klimas, Dr Charles Lapp, Dr Lucinda Bateman, Dr Rosamund Vallings and Dr Daniel Peterson. Each presented a difficult case from their practice and asked the doctors who were present to contribute their thoughts and suggestions. Some good discussions ensued.
IACFS/ME Conference Day 3
Dr Leonard Jason spoke on the importance of a good case definition and recommendations for an empirical definition.
In the session on "Public Health Research", Margaret Parlor, president of the ME/FM Action Network presented the results from the Canadian Community Health Survey. Her presentation can be viewed here
Dr. Betsy Keller spoke on the advantages of 2 day testing over the single cardiopulmonary exercise test in indentifying functional impairment due to post exertional malaise.
The Saturday evening agenda included a banquet dinner and awards presentation. Dr Daniel Peterson was the keynote speaker at the dinner. He traced the history of the IACFS/ME. He started with film footage from 25 years ago that included interviews with Dr Cheney, Kamaroff, Klimas, Bell, Peterson and others. It is remarkable how long people like them have been involved. The conference is demonstrating that the issues are moving forward.
Awards were presented to:
Madison Sunnquist (Junior Investigator Award),
Peter Rowe (Research Excellence Award),
Pia and Richard Simpson (Special Services Award),
Katherine Rowe, (Clinician's Award)
Nancy Klimas, the Governor Rudy Perpich awardee for distinguished accomplishment in the field of CFS/ME.
IACFS/ME Conference Day 4
Sunday morning's sessions focused on pediatrics and neurology. On Sunday afternoon, the Primer was discussed. The conclusion of the conference was Dr Komaroff's summary of the biological findings.
There was considerable interest in pediatric issues among attendees of the conference. There was a report on what young patients found helpful, an observation that many young people experienced limited range of motion, another observation that about a quarter of young patients had delayed milk protein hypersensitivity, and a study which identified biochemical abnormalities in young people after mononucleosis that family doctors could monitor.
The Primer has now been updated, though the electronic version hasn't been posted yet. There have been changes in a number of sections, including the sections on prognosis and mortality, on the severely ill, on depression/anxiety, on activity/exercise, and on pediatrics. An index and a handout for patients were added. The main issue of discussion at the conference was around the difficult and sensitive section on mortality (page 26). There was some question whether the authors had found the right balance.
The primer is available online at www.thebookpatch.com. Official printed versions will be available for $20, reductions for bulk purchases. There was discussion about how to make the document more widely known. The National ME/FM Action Network is making arrangements to have it translated into French.
Many of us observed that there is a new confidence in the community. One sign of this is the expansion of research programs. Dr Komaroff talked about the work in Florida and at Stanford, the inter-site Chronic Fatigue Initiative, NIH multicenter work, and the UK biobank. We in Canada can celebrate the commitment of Canadian clinicians and researchers that attended, and also the fact that CIHR has shown a willingness to get involved.