IACFSME 2022 Virtual Medical Conference: Day 4 Presentations: 30 July (9 am to 3.30 pm EDT)

We have four threads, one for each day of the conference. Please add the following to these threads:
* reports from forum members attending the conference
* tweets and reports from other social media
* your thoughts about the information presented.
* any questions you would like asked of presenters

IACFSME 2022 Virtual Medical Conference: Day 1 Workshops: 27 July (9 am to 5 pm EDT)
IACFSME 2022 Virtual Medical Conference: Day 2 Presentations: 28 July (9 am to 5 pm EDT)
IACFSME 2022 Virtual Medical Conference: Day 3 Presentations: 29 July (9 am to 4.40 pm EDT)
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9.15 am - 9.45 am
POTS Research Update & Review of Autonomic Dysfunction in ME/CFS
Lauren Stiles, Dysautonomia International/ Stony Brook University, USA


9.45 am - 10. 45 am
IMMUNOLOGY/INFECTIOUS DISEASES 2

Immune-related profiles of long COVID patients in the Japanese population
Wakiro Sato, National Institute of Neuroscience, National Center of Neurology & Psych, Japan

Spoiler: S4ME threads on Wakiro Sato's recent work

Patients with ... (ME/CFS) Who Have Already Visited Some Medical Institutions: Diagnosis, Treatment and Research, 2022, Sato
Skewing of the B cell receptor repertoire in myalgic encephalomyelitis/chronic fatigue syndrome, 2021, Sato et al

Elevated ATG13 in serum of patients with ME/CFS stimulates oxidative stress response in microglial cells via activation of receptor for advanced glycation end products (RAGE)
Gunnar Gottschalk, Simmaron Research Inc., USA

Spoiler: S4ME thread on this research

Elevated ATG13 in serum of pwME stimulates oxidative stress response in microglial cells , 2022, Gottschalk et al

EBV and HHV-6A dUTPases Contribute to ME/CFS Syndrome by Exacerbating TFH Cell Differentiation and Extrafollicular Antibody Responses
Brandon Cox, The Ohio State University, USA

Spoiler: S4ME thread on this work

EBV/HHV-6A dUTPases contribute to ME/CFS pathophysiology by enhancing TFH cell differentiation and extrafollicular activities, 2022, Cox et al

 

11.00 - 12.15 am
TREATMENT

An international survey of experiences and attitudes towards pacing using a heart rate monitor for people with ME/CFS
Nicola Clague-Baker, University of Liverpool, England

Spoiler: S4ME thread on related work by Nicola Clague-Baker

* UK Planned study: Feasibility of investigating VO2, HR, BP, lactic acid and activity of pwME during normal daily activity, 2020/21, Clague-Baker et al

Stellate ganglion block (SGB) improves symptoms of ME/CFS: a case series
Luke Liu, Neuroversion, Inc., USA

Spoiler: S4ME threads on Stellate Ganglion Block treatment

* Stellate ganglion block reduces symptoms of Long COVID: A case series (2021) Liu et al
* Stellate Ganglion Block treatment

BREATHE: A mixed-methods evaluation of a virtual self-management program for people living with long COVID
Rosie Twomey, University of Calgary, Canada

Spoiler: S4ME threads on Rosie Twomey's papers

* Chronic Fatigue and Postexertional Malaise in People Living with Long COVID: An Observational Study, 2022, Twomey et al
Other papers: https://www.s4me.info/tags/twomey/

Oxaloacetate improves physical and mental fatigue in ME/CFS and long-COVID
David Kaufman, Center for Complex Diseases, USA

Spoiler: S4ME threads on this work and oxaloacetate as a treatment

* Oxaloacetate Treatment For Mental And Physical Fatigue In (ME/CFS) and Long-COVID fatigue patients, 2022, Cash and Kaufman
* Oxaloacetate

12.15 pm - 1.30 pm
AWARDS CEREMONY

 

1.30 pm - 2.30 pm
PUBLIC HEALTH 2

Engaging patients and caregivers in teaching health professional students about ME/CFS: A workshop model
Cathy Kline, Gloria Gray, University of British Columbia, Canada

Chronic Absenteeism and ME/CFS: A Nurse-Led Approach to Establish the School-Based Active Surveillance Process
Erin D. Maughan, George Mason University School of Nursing, USA

Spoiler: S4ME thread on the School-based Active Surveillance

USA: CDC: School-Based Active Surveillance (SBAS) of ME/CFS Among Schoolchildren, comments invited until 20th Sept 2022.

COVID-19: Understanding recruitment strategies in a community-based assessment of fatigue, cognitive and functional impairments among those after SARS-CoV-2 infection
Nancy Klimas, Nova Southeastern University, USA

Spoiler: S4ME threads related to Nancy Klimas

https://www.s4me.info/tags/klimas/

 

2.30 pm - 3.30 pm
COVID-19 2

Covid-19 infection in patients with ME/CFS– an update
John Chia, EV Med Research, USA

Spoiler: S4ME thread on a recent interview of John Chia

John Chia Interview by Amy Proal and Enteroviruses in ME (Blogpost)

A classification system for post-acute sequelae of SARS CoV-2 infection
Leonard Jason, DePaul University, USA

Prevalence, clinical correlations and predictors of fatigue and severe fatigue 3 and 6 months following confirmed infection by SARS-CoV-2 in The BC Respiratory Cohort
Luis Nacul, University of British Columbia/ BC Womens Hospital, Canada

Spoiler: S4ME thread on a recent post-Covid epidemiology paper co-authored by Luis Nacul

Preprint: Post-viral fatigue following SARS-CoV-2 infection during pregnancy: a longitudinal comparative study, 2022, Oliveira, Nacul et al

 

During the conference volunteers live-tweeted during several of the conference sessions using the forum's twitter account, s4me_info.

This post is a copy of notes made the morning of July 30.

There's a brief announcement made by Irina Rozenfeld on changes to ICD coding followed by notes on the 9:15 AM session, Postural Orthostatic Tachycardia Syndrome Research Update & Review of Autonomic Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, presented by Lauren Stiles.

All notes were taken from this twitter thread (link in quoted section):

=== start of comments ===
Today is the 4th and last day of the IACFS/ME Conference.

Irina Rozenfeld (IACFS/ME) starts the day by highlighting upcoming changes in the ICD-CM where ME and CFS will be listed under code G93.3 "Postviral and related fatigue syndromes" starting on 1 October 2022.

The first presenter of today, Lauren Stiles (Dysautonomia International) adds that Postural Orthostatic Tachycardia Syndrome (POTS) will have its own ICD-10 code in the US.

It will have code G90.A and will be listed under disorders of the autonomic nervous system.
Stiles hopes that this code will improve epidemiological data on POTS.

Before the COVID-19 pandemic, it was estimated that 1-3 million Americans suffered from POTS.

But the condition only receives $1 million NIH funding per year, which is less than ME/CFS.
Stiles is discussing studies that found adrenergic, muscarinic and angiotensin receptor antibodies in over 90% of POTS patients.

A pioneer of this research, Dr. David Kem, unfortunately, passed away recently due to COVID-19.

In Memoriam:
http://dysautonomiainternational.org/blog/wordpress/in-memoriam-dr-david-kem/

Stiles is critical of CellTrend assays, which have been used in ME/CFS research, because one blinded study showed that it could not distinguish between POTS and healthy controls.

All controls had abnormal levels (7 units/mL) of a1 adrenergic receptor autoantibodies.

This is the paper on CellTrend assays that Stiles referred to:
https://pubmed.ncbi.nlm.nih.gov/35766055/

Stiles is summarising research on glucose dysregulation which she thinks might explain why some POTS patients feel better on low carb diet.

There are 5 studies ongoing into vagus nerve stimulation for POTS patients (at Vanderbilt University, Humanitas University, University of Oklahoma, and Children's Wisconsin)

Stiles thinks this is going to be a “really big deal” in POTS and ME/CFS research.

=== end of comments ===

 

Continuation of notes from the @s4me_info twitter thread.

This post is a copy of notes made during the July 30 session at 9:45 AM, Immunology/ Infectious Diseases 2. There were three presenters, Wakiro Sato, Gunnar Gottschalk, and Brandon Cox.

=== start of comments ===

The next presentation is by Wakiro Sato (National Institute of Neuroscience, Japan).

He starts by discussing his previous findings on skewing of B cell receptor repertoire in ME/CFS.

Sato has since extended his study to patients with Long Covid.

Much like in ME/CFS, they found increased antibody-producing B cells and increased autoantibodies (as measured with CellTrend assays) in a subgroup of patients.

The next speaker is Gunnar Gottschalk (Simmaron Research)

He found the protein ATG13 to be increased in the serum of ME/CFS patients suggesting an impairment in autophagy.

There was no difference in lysosomal proteins between patients and controls.

Gottschalk also found that serum ATG13 induced an oxidative stress response (ROS and iNOS) in microglia.

The next speaker is Brandon Cox (Ohio State University)

His research focuses on human Herpesvirus dUTPase proteins which can stimulate the production of pro-inflammatory cytokines.

In ME/CFS patients they found increased levels of antibodies against herpesvirus dUTPase.

Their main hypothesis is that these viral dUTPase are increasing the levels of Activin A and that these on their turn cause abnormal differentiation of T follicular helper cells in a subgroup of ME/CFS patients.

Activin A is a cytokine that is involved in the muscle degradation pathway therefore Cox wants to study if this is related to muscle fatigue in ME/CFS.

There is a short 15 minute break now but afterwards we will have 4 talks on the topic of Treatment.

=== end of comments ===

 

Continuation of notes from the @s4me_info twitter thread.

This post is a copy of notes made during the July 30 session at 11:00 AM on Treatment. There were four presenters, Luke Liu, Nicola Clague-Baker, Rosie Twomey, and David Kaufman.

=== start of comments ===

The first speaker is Luke Liu (Neuroversion, Alaska) who provides more information on 'Stellate Ganglion Block' as means to improve ME/CFS symptoms.

Seems similar to the presentation by Deborah Duricka yesterday.

Liu and Duricka co-authored a case series on Stellate ganglion block reducing symptoms of Long COVID: https://pubmed.ncbi.nlm.nih.gov/34922127/

Now, Liu reports similar improvements in 5 ME/CFS patients.

The second speaker is Nicola Clague-Baker (University of Liverpool). She is one of four members of Physios for ME.

They want to improve physical therapy for ME/CFS and have become more and more involved in scientific research.

They found that many ME/CFS patients pace themselves with a heart rate monitor.

The idea behind this is that, if ME/CFS patients keep their heart rate below their anaerobic threshold, it would lead to less post-exertional malaise.

Clague-Baker and colleagues set up an online survey on the experiences of ME/CFS patients with this type of heart-rate monitoring.

Patients said that the it helped them to understand their PEM triggers better.

The next speaker is Rosie Twomey (University of Calgary, Canada). She and her colleagues created the BREATHE-program a virtual self-management program for Long Covid patients.

The program includes pacing to minimize post-exertional malaise (PEM) because Twomey found that post-exertional malaise is also common in Long Covid.

A preliminary trial of the program will be published soon.

According to Twomey the BREATHE program helps patients to manage a chronic illness and to reduces social isolation. It is patient-centered and group-based.

The next presentation is by David Kaufman on his pilot study of Oxaloacetate Treatment as a treatment for ME/CFS and Long COVID.

Kaufman cautions that this was a small pilot study, not randomized and without a placebo control.

This trial is published here:
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03488-3

Kaufman was encouraged by the results so is now setting up a proper randomized controlled trial of Anhydrous Enol-Oxaloacetate (AEO) on 80 patients in collaboration with the Bateman Horne Center.

Kaufman stresses that his pilot trial could not provide strong evidence but it did not cost much money (almost all ME/CFS patients came from his clinic, long covid patients were recruited online). It helped to quickly query a new compound for a signal of efficacy.

Side note: On S4ME, forum members have provided a critical analysis of the Oxaloacetate trial, including potential financial conflicts of interest of the first author.
https://www.s4me.info/threads/oxalo...fatigue-patients-2022-cash-and-kaufman.28316/

Staci Stevens of the Workwell Foundation wins the First IACFS/ME Innovator Award for developing and applying two-day cardiopulmonary exercise testing in ME/CFS.

There is a 1 hour 15 minutes lunch break now.

=== end of comments ===

 

Continuation of notes from the @s4me_info twitter thread.

This post is a copy of notes made during the July 30 session at 1:30 PM on Public Health. There were four presenters, Cathy Kline, Gloria Gray, Erin D. Maughan, and Nancy Klimas.

=== start of comments ===

The next presentation is by Cathy Kline and Gloria Gray of the University of British Columbia, Canada.

They have developed a patient-led interprofessional workshop for medical students on poorly understood chronic diseases, such as ME/CFS and Lyme disease.

Students found the workshop useful because they could ask questions and interact with patients in a context where they weren’t directly responsible for their care.

The next presentation is by Erin Maughan (George Mason University School of Nursing) on chronic absenteeism and undiagnosed ME/CFS.

The goal was to come up with tool that could help school nurses identify medical reasons for long-term school absenteeism, in particular ME/CFS.

They did a feasibility study with 6 pilot sites in 4 states. They helped nurses to reach out to students and their family to determine the reasons for their absenteeism and ask about ME/CFS symptoms.

Among hundreds of absent students, however, they could not find students that were undiagnosed with ME/CFS.

4 were suspected of having ME/CFS but turned out to have something else when referred to a physician.

One caveat is that the corona pandemic made this pilot study rather difficult to conduct.

Many of the school nurses and medical providers had also not heard of ME/CFS.

The authors will expand the study to include up to 50 districts over a period of 3 years.

The next presentation is by Nancy Klimas (Nova Southeastern University).

She reports on a study, contracted by the CDC, that will apply the extensive testing of the Multi-Site Clinical Assessment study of ME/CFS (MCAM) to persons with a SARS-CoV-2 infection.

The presentation is mostly about recruitment difficulties of the study.

A mass email strategy, for example, did not work well.

Of 13.000 emails sent out, only 2.4% clicked to open the email and only 0.5% signed the consent form.

That's the end of our live-tweeting.

=== end of comments ===

 

Medscape Treatments Explored to Ease Post-Viral Symptoms of ME/CFS and Long COVID by Miriam Tucker

Quote:
"At the virtual annual meeting of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), speakers presented data for a variety of approaches to ease symptoms common across post-viral conditions, such as extreme fatigue, post-exertional malaise ("crash"), cognitive dysfunction ("brain fog"), orthostatic intolerance including postural orthostatic tachycardia syndrome (POTS), and chronic pain."

Treatments mentioned in the article are:

• Pyridostigmine (Mestinon, Others)
• Oxaloacetate (benaGene)
• Inspiritol
• Stellate Ganglion Block
• Transcutaneous Auricular Vagus Nerve Stimulation

 

Medscape Increasing Data Link ME/CFS, Long COVID, and Dysautonomia by Miriam Tucker

quotes:

At the virtual annual meeting of the International Association for Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (IACFSME), speakers presented data showing similar pathophysiologic abnormalities in people with systemic symptoms associated with ME/CFS who had a prior SARS-CoV-2 infection and those who did not, including individuals whose illness preceded the COVID-19 pandemic.

...

"My way of understanding these illnesses is that they're not just multisystem illnesses, but all these interactive systems that lean on each other are dysregulated…I would say that a very common underlying mediator of both ME/CFS and long COVID is autonomic dysfunction, and it presents as POTS," Nancy Klimas, MD, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, Fort Lauderdale, Florida, told Medscape Medical News.

...

Lucinda Bateman, MD, founder and director of the Bateman Horne Center, Salt Lake City, Utah, advises using all applicable codes for a given patient. "If a patient came into my office with long COVID and met criteria for ME/CFS, we would code both, and also any other syndrome criteria that they may meet, such as POTS or fibromyalgia.

...

In a keynote address during the conference, Akiko Iwasaki, PhD, of Yale University, New Haven, Connecticut, pointed out that long COVID and ME/CFS are among many unexplained post-acute infection syndromes associated with a long list of viral pathogens, including Ebola, the prior SARS viruses, Epstein-Barr virus, and Dengue, as well as non-viral pathogens such as Coxiella burnetii (Q fever syndrome) and Borrelia (post-treatment Lyme diseasesyndrome).

...

The long COVID patients also showed greater ventilatory inefficiency, which "is entirely related to hyperventilation, not intrinsic lung disease," Systrom said, adding that while there may be subsets of patients with interstitial lung disease after acute respiratory distress syndrome, these patients didn't have that. "This for all the world looks like ME/CFS. We think they are frighteningly similar, if not identical," Systrom said.

 

Medscape Clinicians Can Help People With Severe ME/CFS, Even Unseen by Miriam Tucker

Quotes:
Speaking at the recent virtual meeting of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), patient advocate Helen Baxter, of the UK charity 25% ME Group, presented a case series of five patients bedbound with ME/CFS who became severely malnourished because of delays in the placement of feeding tubes. The delays occurred because it was not recognized that the patients were unable to eat.

...

Asked to comment, Lucinda Bateman, MD, founder and director of the Bateman Horne Center, Salt Lake City, Utah, told Medscape Medical News, "It's a big gap, even in the knowledgeable community. The research is totally skewed towards people who can get up and go participate in research.... I don't think most clinicians have any idea how sick people can get with ME/CFS."

...

Importantly, Speight stressed, "avoid referral to psychiatrists unless specifically indicated for additional psychiatric morbidity, in which case, make clear that the psychiatrist accepts [that the] basic illness is medical."


He also advised that clinicians stop using the term "chronic fatigue syndrome" because it suggests the illness is mild and/or psychosomatic. "Maybe the US should embrace the term ME once and for all," he said.