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.
Dr. Leonard A. Jason presented on “Pre-Illness metabolomics data among college students following mononuclosis and ME/CFS reveals differences in multiple metabolites and metabolic pathways”. #IACFSME #MECFS #LongCovid
The key question to his study is: why do some people continue to be ill following a viral infection versus those recover from that same illness. His study examined patients prior to them getting sick (with mono, EBV). #MECFS
Study findings : patients “who developed #MECFS following IM [mono infection] did not have significant pre-illness baseline differences in stress, coping, anxiety, or depression”. “Baseline deficiencies in IL-5, IL-6, and IL-13 in the severe ME/CFS” group.
“Deficiencies in production of IL-5 and IL-13 prior to contracting IM [infection] may influence immune response and immune dysregulation once the virus is contracted.#MECFS #LongCovid
“Those who develop severe ME/ CFS following IM had more centrality, or dense interconnected cytokine networks at baseline, at least six weeks prior to the onset of IM”. #MECFS #LongCovid
“Significant differences in peak area value between the severe ME/CFS and recovered groups were observed for eight metabolites.” “These metabolites are thus candidate biomarkers for predicting the development of severe ME/CFS 6 months following IM.”#MECFS #LongCovid
This ”suggests changes in metabolic pathways that may plausibly contribute to the pathophysiology of ME/CFS in general. These findings reinforce biological differences between those who fully recover following IM and those who go on to develop severe ME/ CFS.” #MECFS #LongCovid
Dr. Katie A. Glass‘s presented on :“Urine metabolomics exposes anomalous recovery after maximal exertion in ME/CFS female patients.” #IACFSME #mecfs No previous studies of ME/CFS patients had measured metabolites in urine after an exercise challenge.
Dr Glass found: excretion of metabolites in urine was altered in female #MECFS patients, compared to controls, post-exercise - particularly metabolites involved in fatty acid metabolism and pathways related to glucose metabolism. More research is needed, especially on lipids.

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More from @patientled

Jul 29
We are super excited to announce the Request for Proposals for our $5 million in funding for #LongCovid & associated conditions!

Please RT & circulate to any researchers with ideas for biomedical research! patientresearchcovid19.com/projects/patie… #pwME #NEISvoid

Deadline is September 23rd!

1/ Patient-Led Research Collab...
The RFP can be found on our website here:
patientresearchcovid19.com/projects/patie… and here as well: docs.google.com/document/d/1jp…

A webinar will be held on September 1st for Q&A. Any others questions can be sent to team+questions@patientledresearch.com!

2/
An application template is available here: docs.google.com/document/d/11B…

We are aiming for these to be short proposals, for ease of both those sending applications and those evaluating them!

3/
Read 4 tweets
Jul 29
3:00 pm ET panel on Public Health at IACFS/ME. Image
Learning objectives Image
From Dr. Twomey, Outreach materials for survey on ME/CFS in Canada. Image
Read 11 tweets
Jul 29
Starting at 1:40 pm ET at IACFS/ME, first panel discussion on COVID-19 related topics.

#CovidIsNotOver #mecfs #LongCovid #iacfsme #COVID19 @itsbodypolitic Image
Learning objectives for these talks. Image
Dr. Boolani -- post-covid ME/CFS, and risk factors for that diagnosis.
Read 22 tweets
Jul 29
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
Jul 29
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
Jul 29
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

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