Discover and read the best of Twitter Threads about #IACFSME

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Starting at 1:40 pm ET at IACFS/ME, first panel discussion on COVID-19 related topics.

#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Learning objectives for these talks.
Dr. Boolani -- post-covid ME/CFS, and risk factors for that diagnosis.
Read 22 tweets
Prof. Akiko Iwasaki @VirusesImmunity of @Yale @YaleMed is the keynote speaker of #IACFSME conference, presenting today on the immunology of Long COVID. #viruses #immunology #CovidIsNotOver #mecfs #LongCovid #COVID19 @itsbodypolitic
Dr. Iwasaki explains that SARS-Cov2 is “one of many unexplained post-acute infection syndromes [that]
occur after encounter with many distinct pathogens” (such as EBV, polio, & dengue). @NIH #LongCovid #LongCovidKids
Dr. Iwasaki says that COVID-19 can cause long-lasting symptoms involving almost all organs and cites @patientled research on symptomology of #LongCovid. @NIH #CovidIsNotOver
Read 17 tweets
Next, whose presentation within the module, Clinical Cases, is an interactive session, Dr. Lucinda Bateman @bateman_md spoke: “Can discordant identical twins become concordant for ME/CFS?” #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Dr. Bateman speaks of a case study: an identical twin female, 17years, track athlete, who developed severe exhaustion affecting every area of her life. She was able to attend college, but never able to work full-time. #MECFS
At age 24, she suffered an infection and was erroneously diagnosed with a psychiatric disorder. She was seen by Dr. Bateman, who tested for and diagnosed dysautonomia. The patient was able to be upright for 1 hour on worst days. Pyridostigmine was a beneficial therapeutic. #MECFS
Read 17 tweets
2nd day of Research Presentations at the IACFS/ME Conference iacfsme.org/2022-conferenc…: Dr. Lily Chu, Vice-President of #iacfsme welcomed attendees and presenters. #CovidIsNotOver #mecfs #LongCovid @itsbodypolitic #COVID19
Dr. Daiki Takewaki presented from Tokyo on how:“Dysbiosis in the gut microbiome accompanies skewed immunological and clinical parameters in patients with ME/CFS”. #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
The Japanese study confirms significant dysbiosis in ME patients, versus controls. #CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Read 8 tweets
Next up at the #IACFSME conference is Dr. Nicola Clague-Baker @ClagueNjc36 presenting on “Feasibility of investigating oxygen consumption (VO2), heart rate variability, blood pressure and lactic acid levels of people with myalgic encephalomyelitis during normal daily activities”.
This was a (successful) feasibility study, with enrollment being closed after 24h, showing that physiological measurement during everyday activity is possible for those patients with mild to severe #MECFS .
Dr. Clague-Baker‘a study adapted for different severities of ME/CFS in order to identify abnormalities and prevent harm to patient health. The outcome measures identified abnormal physiological changes in all patients with #MECFS.
Read 12 tweets
IACFSME at 3:45 pm ET -- Panel on Metabolism and Co-Morbid Conditions.

#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Here are the learning objectives listed for these talks.
Dr. Baraniuk is assessing the potential for biomarkers in Cerebral Spinal Fluid.
Read 22 tweets
Up next at #IACFSME: three presentations under the Immunology track. Starts at 1:30 pm ET.

#CovidIsNotOver #mecfs #LongCovid #COVID19 @itsbodypolitic
Background info on Dr. Roy's paper: Here we report a potential mouse model that displays ME/CFS pathologies after two weeks of gavaging with 5 mg/kg bwt of compound # 13563531, a potent autophagy inhibitor.
Dr. described a set of procedures to develop the mouse model, most of which focused on the inhibition of autopathy.

#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Read 16 tweets
1st day of Research Presentations at the 15th IACFS/ME Conference: Fred Friedberg, President of IACFS/ME, welcomed participants and discussed the non-profit organization’s missions: promoting science-based care, publishing peer-reviewed papers, hosting conferences on #MECFS.
Dr. David Systrom, pulmonologist, presented on the pathophysiology of exercise intolerance in ME/CFS & Long COVID.
iacfsme.org/2022-conferenc… #CovidIsNotOver #MECFS #LongCovid #iacfsme #COVID19 @itsbodypolitic
Dr. Systrom said that in iCPET testing, ME/CFS sufferers are often not too far from “normal” re: peak oxygen levels. However, in many ME/CFS and Long Covid patients, there are patterns of preload failure, which contribute to exertional intolerance. #LongCovid #CovidIsNotOver
Read 14 tweets
Researchers: want to see the resources from my workshop at #IACFSME earlier today?

Check out the landing page for the talk! Here you'll find: 🧵

(1/4)

meaction.net/workshop
ACTIVITY 1: Planning & Budgeting for Research Partners with Lived Experience

Patient participation improves quality, validity & perceived credibility of research.

Use this handout to plan & budget for patient partners at every stage of research. (2/4) meaction.net/workshop
ACTIVITY 2: Recruiting Underrepresented Populations in ME/CFS Research

Sedentary controls, severely ill pts, men, & BIPOC individuals help generalizability & applicability of your research.

Use this worksheet with "outreach points" to represent time & energy investment... (3/4)
Read 4 tweets
Over the next 3 days we'll be tweeting the IACFS/ME conference! The amazing lineup is available here: iacfsme.org/2021-iacfsme-v…

Tweets by @AlisonSbrana, @ItsAngInLA, & @ahandvanish.

Follow this thread! #LongCovid

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Dr. Jarred Younger is up to talk about imaging techniques for neuroinflammation. He has found a way to visualize elevated temperature in the brain and found that people with ME have pockets of heat across the brain - up to 100.8F!

This is related to overactivated microglia.

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He talks about how we're repeating research in #LongCOVID and how we need to be focused on treatments & clinical trials right now, prioritizing the drugs we think will work, which he says there are a ton of. We can't wait for a perfect biomarker before we start trials.

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Read 141 tweets

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