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.
It involves pre- and post- exercise lumbar punctures. MECFS results indicate myelin and white matter dysfunction.
Findings indicates dysregulation of energy metabolism in MECFS.
Results from CSF analysis are showing that people with MECFS are metabolizing incorrectly.
Dr. Pederson is discussing suicidal behavior in chronic invisible illness.
Increased risk is related to illness, chronic pain, and sleep disturbance.
Of note: rates of depression are similar to general population.
In chronic illness, "burdensomeness" may be important risk factor.
Key terms: perceived burdensomeness and thwarted belongingness. Feeling like a burden to family/friends. And, feeling like an outsider in social groups.
Other risk factor is fearlessness of death.
Perceived burdensomeness is greatly impacted by gender -- male gender is a predictor. Others are increased total diagnoses.
Men with chronic illness cannot meet definition of "masculinity"
Key strategies : screening by practitioners, counseling, family structures to provide autonomy.
Third talk is Kate Mudie on joint hypermobility & MECFS
Joint hypermobility is associated with symptoms that parallel MECFS. Connective tissue looseness affects circulation.
Another potential link: craniocervical obstructions.
Recent paper (Vogel, 2022) did not establish a clear link between JH+ and MECFS.
Now, being studied via You+ME registry.
Results are still in early stages. Have not yet seen statistically significant subgroup based on JH+.
In Q&A, Dr. Pederson noted that interactions with health care system can exacerbate risk factors, esp when patients experience gaslighting.

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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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