Reprinted with the kind permission of Cort Johnson and Health Rising.
By Cort Johnson
We are truly in an era that, at least in one way, suits people with chronic fatigue syndrome (ME/CFS) very well. Two major conferences, the Emerge Conference in Australia and the NIH conference in the United States, are both going to be livestreamed over the next month.
No need to fly great distances, book an expensive hotel room and trudge to the conference – you can see them all from home. Yes, you do miss the real opportunity to mingle with fellow ME/CFS patients, researchers and doctors – there’s nothing like meeting and interacting with people in the flesh – but the alternative isn’t bad at all.
Emerge International Research Symposium
Emerge – what a great title for an ME/CFS organization and conference. This is a disease that’s attempting to emerge from the shadows of a scientific backwater into the full, hopefully dazzling light of medical research. While funding, to put it bluntly, sucks no matter side of the Pacific you’re on, it was good that the Emerge conference is funded by the Australian government and has attracted a cast of international researchers. This is, in fact, the second major Australian conference produced in the last year.
Emerge Australia, Inc. is an Australian non-profit that advocates for, educates about, and provides information on Myalgic Encephalomyelitis (ME). (Check out their beautiful website here.)
Emerge’s 2019 ME/CFS INTERNATIONAL RESEARCH SYMPOSIUM from March 12-15th is full of goodies.
The conference starts off with an intriguing presentation by Professor Paul Fisher, who will talk on “mitochondrial respiratory defects in compensatory changes in immortalized ME/CFS patient lymphocytes”. That appears to be technical talk for finding defects in mitochondrial energy production our cells are attempting to compensate for (increased glycolysis?). This is the first talk I can remember which explicitly links issues with energy production to a compensatory process – which makes sense. Our cells are certainly going to attempt to compensate for lapses in their main energy production process. The Fisher finding of a compensatory process indirectly validates the idea that the energy production process has gotten “blown up” in the first place in ME/CFS.
Next, Dr. Cara Tomas of Newcastle University in the U.K. will present on cellular bioenergetics in ME/CFS. Norman Booth, an early pioneer of mitochondrial dysfunction in ME/CFS who died in 2018, would surely be gratified at how much work is going on in this area now. Check out Cara Tomas’s 2018 presentation on the same topic below.
After a morning tea break (this is Australia after all), Dr. Gradisnuk and Dr. Staines will talk on a potential biomarker in ME/CFS involving calcium signaling issues.
Next comes a talk I am eager to see. The Klimas team will not be speaking at the NIH conference – a missed opportunity for the NIH in my humble opinion – but Travis Craddock from her team will be speaking on going, “from genes to… identifying optimal treatment courses for complex chronic illnesses”.
If the Klimas team can “go where no one has gone before” (I have Star Trek on the brain: I’ve been binge watching the excellent new Star Trek Discovery series :)) and actually translate gene expression and other “omics” data into distinct treatment possibilities, they will have taken a giant step forward.
Next comes another intriguing presentation in which Dr. Jo Cambridge of the University College of London speaks on a possible intersection between two potentially critical systems in ME/CFS: the immune system (B-cells) and energy metabolism. This Solve ME/CFS Initiative-funded project also involved Chris Armstrong. Another young SMCI funded researcher, Bhupesh Prusty, will present on the role HHV-6 infections may play in ME/CFS energy production issues at the April NIH ME/CFS conference.
Subscribe to the World's Most Popular Newsletter (it's free!)
An Australian researcher, Dr. Leigh Barnden, has been producing fascinating papers on the brain and ME/CFS for years. His talk – on brainstem imaging in ME/CFS – will be particularly interesting given the recent reports from Jen Brea and others of brainstem compression in ME/CFS. Whether the brainstem is compressed or damaged in some other way, brainstem issues make sense given the autonomic, immune and sensory problems found in ME/CFS.
After a report on mapping fatigue in the brain, a diagnostic machine-learning talk and – an afternoon tea break – the participants will soothe their tired brains with a trip to a nearby winery, the beach, and dinner.
The first half of the next day will be largely devoted to Open Medicine Foundation-funded researchers. Ron Davis and Bob Naviaux are going to be busy travelers over the next month. Both will fly from California to Australia for this conference, and then in three weeks from California to the east coast for the NIH conference.
Davis will speak on what appears to be a new topic for him, “Establishing new mechanistic and diagnostic paradigms”, which suggests that he may be moving closer to a long awaited goal: a new diagnostic paradigm for ME/CFS. Next, his longtime collaborator and statistical and bioinformatic ace, Wenzong Xiao, will speak on results from the OMF’s massive Severely Ill Patient study.
After that, Robert Phair – who will not be speaking at the NIH conference (missed opportunity #2 :)) – will update us on one of the most interesting projects around – his Metabolic Hypothesis for ME/CFS. Ron Davis practically glowed with excitement, finally, of a “testable hypothesis” for ME/CFS at the Stanford Symposium.
After morning tea, Chris Armstrong – who has relocated to the U.S. to work more closely with Ron Davis and the rest of the Open Medicine Foundation team (a sign that things must be going well with Armstrong’s metabolomic research) – will present on “Longitudinal Metabolomics Research”. When last heard from, Armstrong was looking for “Wally” (or Waldo depending on where you’re located), a substance he believes could help explain ME/CFS. Given the usual obscurity of research talk presentation titles, it’s not clear if he’s found Wally or not, but if he has, this talk could be something…
Dr. Neil McGregor, the “father of metabolomics research in ME/CFS”, will speak next. McGregor’s mass spectometry paper on “A Molecular Basis of Chronic Fatigue Syndrome” was published over 20 years ago. (Hopefully the long wait was worth it.) McGregor has participated in both of the Open Medicine Foundation’s Stanford Working Groups in the U.S.
McGregor, who also believes he may be onto a key aspect of ME/CFS, makes it at least three Australians (Marshall-Gradisnuk, Armstrong, McGregor) who could be, if we’re lucky, uncovering basic issues in ME/CFS. The title of McGregor’s presentation, “Longitudinal Metabolomic Research”, is is pretty much guaranteed not to excite, but who knows what goodies might be lurking within.
Next comes Dr. Alain Moreau, who seems to have jumpstarted ME/CFS research in Canada. He will, no doubt, be glad to exchange the cold (but amazingly consistent) Montreal weather (high 34/low 32) for the balmy Geelong weather (high 72/low 55). Moreau will speak on stress-activated bits of RNA (miRNA’s) that have the potential to alter our gene expression.
Those are the high points for me: other presentations are being given. Check them out here.
Watching the Conference
The Conference is being livestreamed, but there is a catch – it’s being livestreamed from Australia. The Conference presentations begin at 8:30 AM on March 13th, Geelong, Australia time, which a Time and Date Converter indicates translates to March 12th in the following locations. Particularly if you’re in Europe or on the East Coast, you’re going to have to stay up to watch. Hopefully the conference will be taped as well!
- London: 9:30 PM
- East Coast U.S.: 5:30 PM
- Midwest U.S.: 3:30 PM
- Pacific Coast: 2:30 PM
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 myalgic encephalomyelitis, 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.