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.
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.
As noted, the conference will be livestreamed via the EMERGE website or its Facebook page.
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
For a change it is an advantage to be in Australia for such a thing!
Nice!
Thanks for the rundown on the event…….and tell me…..doesn’t everyone have morning tea?
It’s called a coffee break over here but hey I’m now a tea lover actually. I got introduced to teas in a tea shop in Bainbridge Island off the coast of Washington a couple of years ago. It’s been all tea since then – so much variety 🙂
Cort, this coverage is a real gift. I have trouble looking at the computer screen, though (triggers migraines). After this conference is over, will it be possible to get a written transcript that people can print out and read from hard copy?
Many thanks.
Proud that Emerge is hosting such a great lineup, close to my hometown. Thanks for the preview, Cort 🙂
Australia’s hosting of two major ME/CFS conferences/symposium in the last year is impressive! The metabolomics expertise is spreading but note that much of it has come from Australia…
Isn’t it great that all these researchers can have a lovely holiday in Australia (at someone else’s expense), spending hours and hours presenting and discussing complex and interesting scientific information, all of which has been and will be of absolutely zero benefit to a single ME/CFS patient. It just makes you weep for all those who are suffering from this terrible illness.
I and I am sure many others feel your frustration deeply Phillip. I’m sure most if not all the researchers really do want to make a meaningful difference though, although sometimes some of the research just feels a bit like an interesting theoretical exercise. I know I feel a bit underwhelmed by that. We want meaningful explanations and answers for this illness.
Cort didn’t say much about Gradisnuk and Staines, their research has sounded really promising for a while but doesn’t seem to have delivered the ‘killer punch’, it doesn’t feel like it has ‘kicked on’, but hopefully we might hear something from them that takes things forward MEANINGFULLY.
Gradisnuk and Staines presented at an earlier conference in Australia. I was invited to come but didn’t feel I could handle the trip. Gradisnuk has said she believe she has a biomarker but it hasn’t materialized yet. At the Stanford Symposium Whenzong Xiao presented some data which conflicted with hers. I guess time will tell.
The slow pace of research is frustrating. There are some real possibilities being discussed but I agree that medical research never seems straightforward or very efficient; it always takes much longer than one would want to get somewhere. It particularly takes longer than one would want to translate research findings into treatments.
Travis Craddock will apparently be reporting on Nancy Klimas’s efforts, though. She is a rare practitioner and researcher who is actually doing clinical trials – that is one place a more immediate difference might be made. I don’t know if he will be speaking on those results or not but we should know by summer about those trials I would guess.
I think it’s really too bad that Gerard Peireira of Cortene was not invited to either conference. He’s an incredibly smart guy and has a lot to share. The Cortene trial has finished up and we will get the results at some point.
I would look for news on Robert Phair’s metabolic hypothesis as well as Ron Davis had already been looking for solutions should that pan out. Ron Davis’s talk on a new diagnostic protocol could be VERY important. A biological test for ME/CFS could change so much. That’s one of the big things that drug companies are looking for. Fingers crossed.
Watch Ron Davis’s talk on the OMF site. He’s an elderly man trying to do the best he can by his son. Also, at least those who are working on ME research are doing something worthwhile in their working lives i.e. trying to alleviate human suffering. We are at last getting access to the best researchers, they are however underfunded. These researchers need our support e.g. by trying to lobby for funding for research. Do your best to support the researchers you have faith in.
I continue to support, but for the next generation of ME. I have spent my year to date reading research papers looking for a light at the end of the tunnel, based on my sweet 56 and cancer, I know it will not be in my lifetime. meanwhile, I have spent my money on all the self-claimed doctors who can cure with other things, medicine, mostly food supplements. I have driven myself to bankruptcy, and reduced my pain with CBD oil, or not smoking it. but nothing helped me with the fatigue
Ron’s presentation at this week’s symposium had a lot of the same content. Toward the end he mentioned some treatments they are looking to trial.
Reading between the lines, he did say that one of the drugs (an MS drug) is pretty safe and already available, so I’m going to have a discussion with my CFS-knowledgeable GP about whether it’s worth a shot.
Hi Phillip; frustration understood, but I think it must also be enormously frustrating to pursue a career in CFS research, given how little support our illness receives and how little prestige or support doctor and researchers in it receive. Maybe a little holiday now and then is well-deserved. I support it. And, “basic research” does translate into therapies in time. It is difficult to be patient (esp. as one gets into elderlyhood) but that seems to be the nature of science. Let’s be happy these researchers are onboard. Wishing you – and everyone else — the best.
Philip, sorry I misspelled your name.
Philip I am delighted research is happening. I think most of the researchers want to help us to be fair. I am severely ill myself and frustrated at pace of progress but I still have to try to remain hopeful. Answers will be found eventually!
Cort, you said dr Klimas won’t be at the NIH. When is she going to talk about her clinical trial results with Gulf War veterans and postenapause cfs women? Any news on that?
I don’t know. I talked with her about a month ago – blog coming up – but she only had one result at the time.
I think this is all incredibly good stuff and I will remain with my undying optimism that a breakthrough is on its way. There is no other way. There is so much more happening than in previous decades. I don’t want any negative comments spoiling my mood. I choose to believe.
Thanks Cort. Will be interesting to hear what Ron Davis has got to say.. and good to hear that Chris Armstrong has moved to the US to be part of the Stanford research effort. I really think that’s a great move. Tragically, an awful lot of Australia’s research money and funding for ME/CFS has been wasted over the years…and many Australian national and state-based advocates, activists and front line support groups are acutely aware of this. Following the recent NHMRC deliberations, let’s hope the paltry amount of $5 million allocated by the Australian Government goes to worthwhile research projects this time around – those who will acquit grants properly and do their due diligence with projects that actually target ME/CFS and not just generalised fatigue. I do however now think that our best hope in Australia is with overseas research effort as they have larger numbers of talent, better facilities and a government starting to be on board with this very debilitating disease.
Cort you made a comment about Whenzong Xiao’s data presented at the Stanford Symposium. Trust me. Your observations are correct. Let’s just say that some researchers in Australia are very good marketers and promoters to raise money… above all else.
When I asked about it I was told that Xiao also believed that the researchers had not used the proper genetic databases to assess the relevance of their findings. The proper comparative databases need to be used to produce trustworthy findings.
Wow Cort i.e. Xiao believes that.
I recall a medical doctor/researcher talking about his partner; her job was to evaluate projects and decide when to call a halt:
“when you’re working on research, you’re too close to the project — you need someone (outside the research group) to evaluate it and decide whether to continue to keep going or call a halt”. Maybe, as Tricia Quan says, that’s what’s missing here.
Time and their results will tell. I think they’ve been pretty well-funded – enough funding to get some good results. Let’s hope the doubters are wrong and they’re onto something.
When watching Prof. Sonya Marshall-Gradisnik and Prof. Donald Staines on the (highly underwhelming and frustrating) SBS Insight TV program last year, it seemed as though they were really just promoting their research efforts. Basically just repeating what they’d said in other channels over the last few years and with nothing new to add. It didn’t really inspire much hope for their work. Unlike the research in other places around the world, where updates and new information are regularly produced.
They are presenting at the moment at the symposium, but unfortunately the stream isn’t available on the Emerge website.
Oh my bad. Their first presentation was alreay ended. Dr Cara Tomas’ presentation on ‘Cellular bioinformatics in ME/CFS’ was not streamed due to some embargoed results.
After watching their second session of the morning, my opinion has changed a fair bit. There is definitely a lot of research and progress happening with their hypothesis testing.
Yeah that’s how I feel too. I thought they genuinely had a breakthrough but I am not convinced now.
I read that the whole symposium is going to be livestreamed on their Facebook site. What is it?
Hi cecilia. Here’s a link to it on the bottom of the post. Its starting in about an hour.?
The idea is to manufacture a enough profit per article
to cover the charge. There are practically lots of people doing this and Creating a good living for months or
even years. You can talk with people, ask and answer question. http://go.fireontherim.com/mobilerouletterealmoney892203
In between temporarily (thank the gods) my phone I missed many of the presentation but loved the Craddock one (most ununderstandable – but impressive) and the Barnden – love what he’s doing with the brainstem.
Dr. Leighton Barnden’s talk intrigued me most too. He showed that there is impaired connectivity between the medulla in the brainstem and the mid-brain. I hope that others will follow up on this great lead sometime soon!
Jarred Younger’s talk was very promising,a lot of diagnostics, potential treatments and trials yet to come.
I thought there might be more discussion online, about the symposium and the presentations. Where are the other excited PWMEs at? ?
It sounded like another talk fest full of mediocre science and a lack of meaningful findings. Or am I missing here?
Sounds like you may not have actually watched it? If so, I understand why you would feel this way, I mean it’s the 50th anniversary of the WHO defining of ME this year and research and treatment haven’t moved forward much. I personally find it at times easy to be cynical and jaded, knowing we’ve been almost entirely ignored in comparison with all comparable diseases and conditions. Completely natural and understandable.
That said, I guess the short answer, imo, is yes – you are missing by a long way. Watch the videos from day 3 – it has some very thorough clinician treatment protocols (I’ve only watched Dr Wauchope and Dr Donohoe so far) and some interesting and promising research finding and plans from Ron Davis and Jarred Younger.
You can find the videos on the Emerge Australia FB page.
Maybe I’m just naive about how the content of these videos and the impact it will have. But in my current state (almost remission, possibly returning to the workforce soon) I cant help but feel buoyant.
Videos from the previous days also hold interesting info – during one of the presentations from the Griffith Uni / NCNED duo, it is mentioned that the active ingredient in chilli is on the list of known items that have some sort of negative bearing on CFS/ME symptoms. I had to stop eating chilli a few years back because it would almost immediately cause me to feel ‘spaced out af’. This is merely one of the many things I’ve taken away after viewing and briefly attending the conference.
Anyway, bit of a long answer so apologies for that, but I really feel the symposium contained a lot of useful treatment options we can take to our medical practitioners now and also a tonne of hope, in the form of ongoing and innovative research.
Anyway, I’m guessing Cort will have some sort of report going up at some stage….