Category: Conference

Understanding, diagnosing, and treating Myalgic encephalomyelitis/chronic fatigue syndrome – State of the art: Report of the 2nd international meeting at the Charité fatigue center

Abstract:

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a devastating disease affecting millions of people worldwide. Due to the 2019 pandemic of coronavirus disease (COVID-19), we are facing a significant increase of ME/CFS prevalence. On May 11th to 12th, 2023, the second international ME/CFS conference of the Charité Fatigue Center was held in Berlin, Germany, focusing on pathomechanisms, diagnosis, and treatment.

During the two-day conference, more than 100 researchers from various research fields met on-site and over 700 attendees participated online to discuss the state of the art and novel findings in this field. Key topics from the conference included: the role of the immune system, dysfunction of endothelial and autonomic nervous system, and viral reactivation. Furthermore, there were presentations on innovative diagnostic measures and assessments for this complex disease, cutting-edge treatment approaches, and clinical studies.

Despite the increased public attention due to the COVID-19 pandemic, the subsequent rise of Long COVID-19 cases, and the rise of funding opportunities to unravel the pathomechanisms underlying ME/CFS, this severe disease remains highly underresearched. Future adequately funded research efforts are needed to further explore the disease etiology and to identify diagnostic markers and targeted therapies.

Source: Steiner S, Fehrer A, Hoheisel F, Schoening S, Aschenbrenner A, Babel N, Bellmann-Strobl J, Finke C, Fluge Ø, Froehlich L, Goebel A, Grande B, Haas JP, Hohberger B, Jason LA, Komaroff AL, Lacerda E, Liebl M, Maier A, Mella O, Nacul L, Paul F, Prusty BK, Puta C, Riemekasten G, Ries W, Rowe PC, Sawitzki B, Shoenfeld Y, Schultze JL, Seifert M, Sepúlveda N, Sotzny F, Stein E, Stingl M, Ufer F, Veauthier C, Westermeier F, Wirth K, Wolfarth B, Zalewski P, Behrends U, Scheibenbogen C. Understanding, diagnosing, and treating Myalgic encephalomyelitis/chronic fatigue syndrome – State of the art: Report of the 2nd international meeting at the Charité fatigue center. Autoimmun Rev. 2023 Sep 22:103452. doi: 10.1016/j.autrev.2023.103452. Epub ahead of print. PMID: 37742748. https://www.sciencedirect.com/science/article/abs/pii/S1568997223001866

2022 IACFS/ME Conference – Days 3 & 4

August 2, 2022:
IACFS/ME 2022 Virtual Medical and Scientific Conference July  27 – 30, 2022 

Day 3 (29 July 2022) of the IACFS/ME Annual Conference provided a continuous stream of fascinating and illuminating talks and presentations. The final two days of the conference had a particular focus on the immunology and management of Long-Covid with relevance to ME/CFS.

Dr. Daiki Takewaki at the National Institute of Science Japan talked about clearly identifiable gut dysbiosis (imbalance of gut microbiota involving the loss of beneficial microbial input or signal and an expansion of pathogenic microbes – pathobionts) that correlate with symptoms and immune markers in ME/CFS patients. A number of speakers provided patient case work from clinical practice, including Melissa Siller and Susan Levine MD, Lucina Bateman MD talked on follow-up of identical twins and the risk of family members also developing ME/CFS, and Leigh Jerome PhD on the care and management of Long-Covid patients.

One of the stand-out talks was given by Akiko Iwasaki PhD, a Professor of Immunobiology and Molecular, Cellular and Developmental Biology at Yale Medical School. Dr. Iwasaki provided an especially insightful talk on the biochemical signatures of Long-Covid syndrome. Dr. Iwasaki stated that it was fairly easy to differentiate Long-Covid sufferers simply by examining their symptom profiles on simple symptom surveys, and that Long-Covid was a female dominant illness, just like ME/CFS; symptoms were largely the same as in ME/CFS, with some exceptions, such as breathlessness being more prevalent in Long-Covid but post-exertional malaise (PEM), brain-fog, sleep disturbances, and fatigue all being dominant features of Long-Covid.

Treatments Explored to Ease Post-Viral Symptoms of ME/CFS and Long COVID

August 5, 2022:

By Miriam Tucker

A variety of treatments, most already commercially available, are
under investigation for treating the constellation of overlapping
symptoms associated with myalgic encephalomyelitis/chronic fatigue
syndrome (ME/CFS), “long COVID,” and dysautonomia.

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. Most of the modalities
are already commercially available for other indications, although
some are costly and not covered by payers for these conditions.
—

Treatments discussed in the article are:

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

Read the full article HERE.

2022 IACFS/ME Conference – Days 1 & 2

IACFS/ME 2022 Virtual Medical and Scientific Conference July  27 – 30, 2022 

The annual International Association of CFS/ME (IACFS/ME) conference opened this week with an introduction by its Director, Professor Fred Friedberg. 58 speakers, 20 posters, almost 300 attendees, many early-stage researchers, are due to ‘attend’ the conference. The growth in numbers attending reflects a growing interest in ME/CFS among scientists and health professionals internationally.

The conference focuses on the biomedical, behavioural, and public health aspects of ME/CFS and associated comorbidities with a portion of the conference to be devoted to COVID-19 and its relevance to ME/CFS research and clinical care.

Read the rest of this report HERE.

Report on the 2021 IACFS/ME research and clinical conference

The recently held 3-day virtual conference (8/19–8/21) of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) resembled our in-person meetings in that we offered the full range of meeting events including new research talks, poster sessions, professional workshops (shortened), clinical symposia, and patient/public talks. We also were honored to have a timely keynote speaker, NIH physician-scientist, Dr. Avi Nath, who addressed ME/CFS and Long COVID.

Clearly, the virtual medium has many advantages, particularly convenience and cost, although technical limitations preclude much of the meet-and-greet and networking that are standard at our in-person conferences. We expect our 2022 conference at Stony Brook University to be in-person. Our NIH conference grant will be used to cover the travel costs of new, early stage and/or under-represented investigators in the ME/CFS field. More information on applying for the 2022 travel award will be posted in the fall.

Our final participation figures (378 attendees) were comparable to our in-person conferences. Attendees included 223 Professionals (60%) and 155 Patient/ Public (67% attended all 3 days). Forty-five percent rated the conference as “Excellent” and 81% Excellent or Very Good. About 55% said there was nothing in particular that they disliked. The online format was liked by 71%, and the availability of conference recordings was liked by 77%. Eighty-six percent were interested in future virtual meetings. Most suggestions were scattered among different items like wanting more breaks, longer talks, a list of attendees, improved sound, etc. For some of these suggestions, there are good reasons not to implement them. For example, attendees like their confidentiality and 60% preferred the shorter day with breaks that could be taken anytime with viewing later. An additional 100+ individuals did not attend live and are interested in the conference recording which we expect will be available in early to mid-September. Our membership has now increased to 221.

Read the rest of this article HERE.

Source: Fred Friedberg (2021) Report on the 2021 IACFS/ME research and clinical conference, Fatigue: Biomedicine, Health & Behavior, DOI: 10.1080/21641846.2021.1976560

Discovery Forum 2017: An Interview with Dr. Maureen Hanson

Solve ME/CFS Initiative’s 2nd Annual Discovery Forum, held on October 14th in Washington DC, brought together leaders from across industry, academia, federal agencies, and biotech companies to tackle the most pressing issues confronting ME/CFS. In this interview, Dr. Zaher Nahle discusses ME/CFS science and policy with Dr. Maureen Hanson, founder and director of the Center for Enervating Neuroimmune Disease at Cornell University and member of the Solve ME/CFS Initiative’s Research Advisory Council.