IACFS/ME-konferentie 2009:

 

Informeel verslag van Kim Cleary (CAA)

 

 

 

 


 

 

 

 

Van 12 tot en met 15 maart 2009 vond in Reno de grote IACFS-konferentie 2009 plaats.

Voor meer informatie over onderwerpen, programma, sprekers etc. klik hier.

 

Het onderstaande informele verslag is afkomstig van de facebook-pagina van

Kim Claery, de voorzitter van de CFIDS Association of America.

 

Eťn opmerking m.b.t. een niet erg doordachte uitspraak over de dubbele fietstest-studies van de groep van dr. Snell, dr. VanNess en Dr. Stevens is op zijn plaats.

 

De opmerking betreft het onderstaande citaat:

 

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 itís lucky that it hasnít been made a requirement

as some suggested after pilot studies were reported.

 

Uiteraard zal niet elke CVS-patiŽnt de tweede dag minder scoren dan de eerste.

Dat weerspiegelt nu juist de kritiek op de vergaarbakdiagnose-kriteria voor CVS.

Post-exertional malaise/inspanningsintolerantie is gťťn verplicht kriterium voor CVS.

 

Uit korrespondentie met ťťn der onderzoekers is me duidelijk geworden dat

met name CVS-patiŽnten die voldoen aan de Canadese kriteria (60%-075%),

zeg maar de ME-patiŽnten, aanzienlijk minder "presteren" bij de tweede fietstest.

 

De vinding van de onderzoeksgroep toont juist eens te meer het belang aan van:

-  een zeer duidelijk en verstrekkend verschil tussen "CVS" en "ME",

-  het gebruik van harde klinische diagnosekriteria (zoals de Canadese richtlijnen) en

-  het nut van de dubbele inspanningstest om post-exertional malaise te objektiveren.

 

Mensen die de tweede dag even goed of licht beter presteren (de minderheid, 25-30%?)

hebben hoogstwaarschijnlijk baat bij een revalidatieprogramma (zoals GET).

Voor de meerderheid, grofweg de ME-patienten, geldt dat nu juist niet.

 

De konklusies die Klim Cleary aan de recente bevindingen met dubbele fietstesten verbindt en haar argumentatie, zijn, op zijn zachtst gezegd, niet erg gelukkig....

 

 


 

Informal summary of 2009 IACFS/ME Conference

 

 

Kim McCleary

Preisdent & CEO

The CFIDS Association of America

 

 

 

Dag 1

 

http://www.facebook.com/note.php?note_id=73573535538&ref=mf

 

 

Hi all,

 

It's been a long day, especially straddling the time difference between Eastern and Pacific time. Today's agenda was the "Patient Conference," intended to provide an overview of the current state of research and treatment of CFS. Current and former IACFS/ME Board members were the speakers and sessions ranged from broad to quite specific. At the end of the day, all the speakers returned to the podium to address questions that members of the 220-person audience had submitted on note cards. A documentary now in production, "Invisible," was shown and a patient reception and dinner followed.

 

Suzanne and I wished to return the warm hospitality shown to us last spring by the CFS research group in Japan, so we hosted a small dinner in honor of the five members of the group who travelled across the ocean to participate in the meeting. It was an enjoyable evening and a good way to catch up with colleagues who had travelled so far to attend.

 

I hope you'll look at the photo album we've assembled and take note of the captions to put faces to names you might recognize.

 

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:

 

Common themes:

  • 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
  • Energy conservation:
  • 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

Treatment:

  • 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!

Research:

  • There are lots of opportunitiesfor 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 techniques all hold tremendous promise in uncovering more useful information forthe 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

 

 

Good night from Reno!

 

 

Dag 2

 

http://www.facebook.com/note.php?note_id=73797250538&ref=mf

 

 

Hi all,

 

Reporting in from Day Two of the IACFS/ME conference, the hour islate 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 presentthe latest data on research being conducted in CFS. About 180 people registered for the meeting and for most of the day, the largeballroom was full. Many patients stayed over from yesterdayís patient conference, determined to push through exhaustion and brainfog to hear the latest data from the researchers themselves. Somestayed just to soak in a sense of progress and camaraderie.

 

In addition to research groups from across the U.S., today researchwas 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 teamís 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 onisoprinosine, although itís not available in the U.S., but can be ordered from Canada or Europe with a prescription. EMDR performed bya licensed practitioner also provided some benefit. Xyrem (sodiumoxibate) 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 doctorís New Zealand medical practice Ė good news, I suppose.

 

In the short session on neuroendocrine advances, two investigators funded by the CFIDS Association presented data. Dr.Alan Lightís 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. Klimasís group atUniversity of Miami showed some data that neuropeptide Y correlateswith symptom severity.

 

The program ended today with an address from John Kitzhaber, M.D., the former governor of Oregon. Dr. Kitzhaber presented his ideas fora 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 fromattendees.

 

This evening Suzanne and I were invited guests to attend a receptionat the Nevada Museum of Art hosted by Annette and Harvey Whittemorein support of the IACFS/ME. We enjoyed having time to converse with researchers and advocates alike, although neither of us took the opportunity to see the museum exhibits that were open to guests. Several administration and faculty of the University of Nevada-Renoand the Whittemore Peterson Institute were there in support of expanding CFS research.

 

After the reception, Suzanne had some research-related conversations while I took time to visit with several of the people who worked on the local patient task force to make the conference a success. I enjoyed renewing old friendships and meeting new people, all part ofthis vibrant, courageous and persistent community.

 

Suzanne has made a 7 a.m. meeting for us and the program starts at 8a.m., so I will close here. More news to follow from the Saturday session!

 

 

Dag 3

 

http://www.facebook.com/note.php?note_id=73956785538&ref=mf

 

 

Friends and coworkers are expressing concern (dismay?) about thehours at which Iíve been posting updates, so Iíll make a quick report this afternoon --

 

The format today followed the same schedule as yesterdayís session:11-minute data presentations grouped by broad topic were followed bya Q&A wrap-up of those speakers, each of whom was asked to respondto two or three questions submitted from the audience on notecards. While this helps move the agenda along and spreads questions moreevenly among the speakers, weíve found something missing in the ability for questioner and answerer to offer clarifying points and provide more challenge to the data being presented. Itís also not possible to know what questions asked were not answered, as the speaker can choose among more questions than he or she will havetime 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, thereís no way to tell from inside the hotel whetheritís light out or dark, sunny or raining. In fact, by day threeSuzanne and I both feel like weíre suffering from Induced Seasonal Affective Disorder. I canít 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! Todayís 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. andthe 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 a go in Ft. Lauderdale, the role of viruses and other infectious agents has been a frequent topic, with studies of variousherpes viruses (Epstein-Barr virus, HHV-6A, HHV-6B, and HHV-7) and parvovirus B19 specifically. The range of findings still suggeststhat the ability of the human host to respond to infection may bemore relevant than the type of infection, but the answer likely liessome where in the interface between the two. Related to this, the difficulty of obtaining reliable tests to measure for active versuslatent virus limits clinical utility and the ability to developappropriate treatment strategies. There were no new studiespresented 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 atest-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 itís lucky that it hasnít 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. Broderickís 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 itís 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 anddiagnostic criteria developed for youth. It may also be due to thevarying 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.

 

This evening the IACFS/ME will host its awards banquet and keynoteaddress. Suzanne will be honored for research excellence and I will post her delivered remarks and photos from the event later tonight. I know youíll all join me in congratulating her on her achievements since joining the Associationís staff as Scientific Director 16 months ago, and during the 11 years she has spent studying CFS andcontributing so much to the field.

 

Signing off for now from Reno,

 

 

Dag 4

 

http://www.facebook.com/note.php?note_id=74313660538&ref=mf

 

 

The final day's morning session delivered one overview and seven new studies on Research Developments in Genetics. Cutting-edgeapproaches 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 onsettype, was added to build new "fingerprints" for CFS. While each ofthe seven studies used different techniques, platforms and caseselection/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 andtesting 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 agreeupon 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 differentperspectives 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 withmuch 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 incombination 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 requirecomplex processing, and CFS subjectsí 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 patientsí motivation to do well on the test might not make it an appro≠priate surrogate of cognitive performance on day-to-day tasks. Dr. Dikoma Shungu, another of the Associationís funded investigators, reported the nega≠tive results of a comparison of GABA levels in the brains of CFS patients compared to healthy controls and depressed subjects. His groupís work continues, using magnetic resonance spectroscopy toidentify 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 identifiedto have anti-fatigue properties, nutritional approaches to combatfatigue, measures of autonomic dysfunction, and the pathophysiologyof 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 Ė 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)

 

Harvardís 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
  • Cytokines
  • Treatments

I look forward to Tonyís 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 Tonyís summary will be posted to their website, although she did specify a date by which that would happen. Weíll 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 youíve 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 canít participate in person. Suzanne shares that feeling. Iíve enjoyed sharing my observations and trying to impart a flavor of the meeting and organized social activities through the Associationís Facebook profile.

 

 

Stay tuned for more from Charlotte and other points as the Association continues working to solve CFS!

 

 

 

Kim McCleary

March 15, 2009

From the Phoenix airport, during a layover on my way home

 

 


 

Met dank aan Dean die me attendeerde op het bovenstaande verslag