Something that’s never happened in thirty years is happening: the International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFS/ME) Conferences are happening one year apart. That’s presumably due to the newfound ease of hosting conferences online.
Founded in 1990, the IACFS/ME holds a unique place in the ME/CFS universe. The international organization for ME/CFS professionals (and patients can join and support as well) the organization produces international conferences, publishes a peer-reviewed journal “Fatigue: Biomedicine, Health, and Behavior”, produces position statements, and participates in medical education.
First, let’s note and thank the conference sponsors who are helping to make it possible to spread the latest chronic fatigue syndrome (ME/CFS) news far and wide:
- Kantor & Kantor – disability attorneys specializing in ME/CFS, long COVID, and similar illnesses.
- Open Medicine Foundation – proud supporter of no less than five ME/CFS research groups.
- Solve M.E. – researcher funder and ME/CFS and long-COVID legislative advocate extraordinaire.
- You+M.E. Patient Registry – Solve M.E. thrusts ME/CFS into the big time with its potentially groundbreaking ME/CFS and long-COVID patient registry.
- Institute for Neuroimmune Medicine – Nancy Klimas’s huge ME/CFS and Gulf War Syndrome, and now long-COVID, research effort involving supercomputers and patient trials.
With the connection between long COVID and ME/CFS pretty firmly established, and money beginning to pour into long-COVID research, this is an exciting time.
The conference runs from August 19-21, 2021. No need to gulp down too much coffee to stay engaged, this conference’s easy listening hours run from 10:00 AM to 3:30 PM (EDT) each day.
August 19th, the first day, is as it usually is, split into sessions for professionals or patients. The Patient Day couldn’t start any better than with Jarred Younger (known as “the neuroinflammation man” on Health Rising) asserting that “To Conquer ME/CFS, We Must Conquer Neuroinflammation”!
Next comes a talk on orthostatic intolerance (OI) from the man who basically started the OI field in ME/CFS – Dr. Peter Rowe. Rowe has been collaborating on some groundbreaking papers with Dr. Visser in the Netherlands over the past couple of years.
Then another seminal figure – Dr. Larry Afrin – will talk on a subject that’s pretty much taken ME/CFS practitioners by storm over the past couple of years – mast cell syndrome. Michael VanElzakker – the originator of the Vagus Nerve Hypothesis – who is now working with Amy Proal – will then talk on “something”.
In what will surely be one of the most interesting talks for patients, one of our most creative and intellectually curious doctors, Dr. David Kaufman of the Center for Complex Diseases will tell us what he considers the “New Frontiers in ME/CFS”.
The title of Dr. Eleanor Stein’s talk, “Self-Management: The Biology of Change”, says it all about the fast-growing field of neuroplasticity. The idea that some forms of self-management can lead to biological changes is both fascinating and controversial.
After Irina Rozenfeld talks on how Integrative Medicine promotes healing, Kantor & Kantor will spend 45 minutes on a vital topic: “Long Term Disability Insurance Challenges for Individuals Living with ME/CFS”. Next comes a subject we don’t hear about enough – how environmental exposures can affect fatiguing illness – and lastly come two talks on using heart rate monitoring to improve your quality of life and avoid post-exertional malaise.
Keynote Address – With Avindra Nath in the thick of it, both long COVID (2 studies) and ME/CFS (1 study), what better choice than Nath to kick off the research part of the conference with the keynote address. Nath will speak for 45 minutes on perhaps the key issue of the day, “ME/CFS and Long-COVID: Overlapping or Distinct Entities?”
So far, the symptoms seem similar but we know little about potential biological overlaps. Let’s hope Nath finally has some information to share from the very intense NIH ME/CFS Intramural Study – which, of course, set the stage for his almost as intense long-COVID studies.
More long COVID/ME/CFS presentations show up in the Infectious Diseases Section as John Chia reports on his study of ME/CFS patients with long COVID, and Lenny Jason compares long-COVID and ME/CFS symptoms. John Chia comes right back to report his new findings on enterovirus infections of the brain in ME/CFS.
Then comes my favorite part – the Provocation Section (i.e. the exercise studies)! There’s just nothing like an exercise study to get my heart pounding (which, come to think of it, may not be the best thing) and the exercise section is a strong one this year.
Rakib Rayhan has been doing exercise challenges with James Baraniuk at Georgetown University for almost ten years. He’ll be reporting on how an MRI showed that the brains of people with ME/CFS have an ‘altered resting state” after exercise. (My guess is that they’re not resting too much.)
Then, from Maureen Hanson’s Cornell ME/CFS research centers, Ludovic Giloteaux will show how an exercise test changes the protein content of the extracellular vesicles she’s been studying.
Next, Todd Davenport of Workwell Foundation will explore a heretofore pretty much-unexplored aspect of exercise in ME/CFS – lung functioning. Exercise studies have shown that just about every other aspect of exercise (VO2 max, heart rate, etc.) is off in at least some people with ME/CFS. We’ll find out if something is going wrong with the lungs as well in Todd’s talk, “Ventilatory Functioning During Serial Cardiopulmonary Exercise Testing in People With and Without Myalgic Encephalomyelitis/Chronic Fatigue Syndrome“.
One of the nice things about Maureen Hanson’s ME/CFS NIH research center was the focus she put on using exercise to highlight the issues in ME/CFS. Another member of Maureen Hanson’s lab, Arnaud Germain, will tell us how post-exertional malaise alters the metabolomics, or metabolites, over time in our bodies.
Next, in the Biomarker Section, we will head north to Montreal to hear how circulating miRNA’s and irisin (irisin?) distinguish ME/CFS. If you don’t know what irisin is (I didn’t), it’s a recently discovered hormone that – get this – gets secreted from the muscles during exercise (!).
After that potentially quite interesting talk, Laila Abdullah – a researcher I’ve never heard of – but who has a long track record of lipid research in Alzheimer’s and Gulf War Syndrome – will report on the apparently odd lipid profiles in ME/CFS.
The IACFS/ME threw James Baraniuk’s exercise study into a short Neurology Section. He will report on the effects of exercise on the arousal network in the brain. Finally, we’ll head down south as a Melbourne researcher, Elisha Josev, talks about brain white matter integrity (or the lack of it) in adolescents in ME/CFS.
Then in the Advocacy Section, we’ll have a full hour on the legislative efforts underway to boost ME/CFS and long-COVID research and treatment funding. We’ll probably need that hour. As the ME/CFS – long-COVID link has become more and more established, advocacy has become more complex – and more impactful over the past year. Kudos to Solve M.E. and others who recognized the opportunity that long COVID presents for everyone with a post-infectious illness, and shifted gears and became leaders in this new effort. There is a lot going on and this is a presentation not to be missed.
The third and last day starts off with the Immunology Section and a hunt for a biomarker from Japan. Wakiro Sato from Japan will present on a biomarker using B-cells – which seem to present an almost inexhaustible source of study.
Anna Gill of the University of Massachusetts is another researcher new to the field (the Conference is chock full of them). She’ll be talking about immune dysregulation and T-cell exhaustion in BOTH ME/CFS and long COVID. Let’s hope she’s finding some similar results. In his second talk of the day, Lenny Jason will take on one of the more important questions in ME/CFS – why one person versus another may be prone to coming down with a severe case of ME/CFS.
Next, in the Neurology Section – which seems a little light this year – Rudd Raijmakers of the Netherlands will suggest what we all know is possible – that different infectious triggers may be producing different types of ME/CFS – when he reports that he found no evidence of neuroinflammation in people whose ME/CFS was triggered by Q fever syndrome. Talks on cognition, severe and very severe ME/CFS, and something on ME/CFS and the coronavirus vaccines (by Elizabeth Unger), will follow.
The Clinical Section always has some interesting presentations. This year, Dr. Bonilla will talk on the latest and greatest (and most surprising) possible drug treatment option – Abilify. Tania Dempsey, a functional medicine MD, will present on a patient she treated, and in “Oxaloacetate Supplementation Provides Hope for Fatigue Amelioration in ME/CFS“, David Kaufman will talk on a mitochondrial supplement that he’s apparently very high on. Lastly, Ilene Ruhoy MD will bring autoimmunity and long COVID into the discussion when she talks on post-COVID cases of autoimmune encephalitis.
Finally, in the second Provocation Section, Todd Davenport of Workwell will report that just two symptoms are needed to identify that post-exertional malaise (PEM) is happening. Since PEM needs to be distinguished from fatigue, my guess is that these symptoms may not be the ones that first come to mind. Lynnette Hodges of New Zealand will talk on what a repeated 5-minute exercise challenge did to ME/CFS patients’ physiology.
Lastly, after decades of summing up the conferences, Anthony Komaroff has apparently handed the reins of giving the final summary talk to Lily Chu MD. It’s a bit jarring not to see Komaroff there, but many thanks to him for being such a consistent and eloquent presence for so long.
Besides the opportunity to catch up on the latest findings and treatment options for ME/CFS, there is also simply the opportunity to support our professional ME/CFS organization. Way back in 1990 – long before ME/CFS had any real recognition – Dharam V. Ablashi and Orvalene Prewitt founded the IACFS/ME to bring researchers, patients and advocates together. They knew that that’s what happens with major diseases, and indeed almost all major diseases have professional organizations. Some close to ME/CFS do not, though. Fibromyalgia, for instance, does not. One of the reasons to sign up for the conference is simply to support our professional organization, and ensure that it and these conferences will continue. (Note that becoming a member in addition to attending the conference gives you a discount for the conference.)
Registration is open from July 1, 2021 to August 18, 2021, 10 AM EDT. Register by August 12, 2021 and receive 25% off.
A variety of options for patients exist. (Professionals, please check out this page.)
|Patient/ Public 3 Days:
|$200||$266.67||Patient/ Public Day + 2 days of research presentations.|
|Patient/ Public 3 Days: IACFS/ME Member||$150||$200||Patient/ Public Day + 2 days of research presentations. For IACFS/ME Associate Members.|
|Patient/ Public 1 Day:
|$65||$87||Patient/ Public Day only.|
|Patient/ Public 1 Day: IACFS/ME Member||$50||$67||Patient/ Public Day only. For IACFS/ME Associate Members.|
Find out more about the Conference here – and register here.