Discover and read the best of Twitter Threads about #IACFSME
Most recents (10)
Jul 29th 2022
Read 22 tweets
Starting at 1:40 pm ET at IACFS/ME, first panel discussion on COVID-19 related topics.
#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Learning objectives for these talks.
Dr. Boolani -- post-covid ME/CFS, and risk factors for that diagnosis.
Jul 29th 2022
Read 17 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
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
Jul 29th 2022
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
Jul 29th 2022
Read 8 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
Jul 28th 2022
Read 12 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.
Jul 28th 2022
Read 22 tweets
IACFSME at 3:45 pm ET -- Panel on Metabolism and Co-Morbid Conditions.
#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
#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.
Jul 28th 2022
Read 16 tweets
Up next at #IACFSME: three presentations under the Immunology track. Starts at 1:30 pm ET.
#CovidIsNotOver #mecfs #LongCovid #COVID19 @itsbodypolitic
#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
#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic
Jul 28th 2022
Read 14 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
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
Jul 27th 2022
Read 4 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
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
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)
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)
Aug 19th 2021
Read 141 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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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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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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