Isabel Ramirez-Burnett Profile picture
Jun 2 18 tweets 2 min read Twitter logo Read on Twitter
Post infection consequences of neurocognition
#longcovid on a global level has shown the consequences of LC and brought attention to post viral conditions
LC clinics benefit LC patients and MECFS patients as well. Pts can be at many different phases of the post viral conditions
A parent perspective on 17yo MECFS pt in Sweden- read about it online as this pt was followed. Will link after conference
Temporary resolved sampling of patients #remissionbiome - during the pandemic PTs were visited and transported to research facility in an international collaboration
Patients underwent metabolism is, surveys, clinical data and integration analysis - 3k samples being collected and analyzed
Again Lactate as an important marker of dysfunctional mito activity. Hypothesis: abnormal energy meta and abnormal hypoxia
The team took the lab on the road to western Sweden and set up the lab at a patient’s kitchen
Tests were performed on cognitive exertion, social exertion and low intensity physical exertion
Sampling of baseline, exertion, 5, 10 and 15 mins post exertion.
The ambulatory lab was able to collect samples despite challenges, like logging the bike (for low intensity exercise test) 15 flights w/o elevator
Patients were stratified by demographics and subject characteristics. Glucose and lactate were also monitored.
Over 2000 samples were collected and analyzed
Lactate was elevated vs healthy control from baseline to 30 mins post exertion
Samples are being analyzed metabolomics-life style related bio markers to try to map a phenotype (s) .
Preliminary analysis finds some increased markers.
We are hopeful that we will be able to contribute to help patients with our research.
The above thread from Jonas Begquist - U of Uppsala, Sweden

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More from @IsabelRamirezRD

Jun 2
Key points summary - Ron Davis :
Susceptibility factors:
Immuno genetics /dysregulation
Micronutrient deficiency
Viruses
Microbiome (virome mycobiome, archaeome, etc)
Mitochondrial
All of them are risk factors and we need to understand the interrelationships of complex disease and the possibilities for differentiated treatment by patient stratification. Biomarkers remain elusive and clinical subtypes need phenotype & system biology approach
We have just started to define the edges of the puzzle, we need to be able to complete the puzzle by understanding the big picture and what pieces are the components.
Read 5 tweets
Jun 2
How do you determine molecular cause of MECFS and how do you treat and cure it ?
There are many crossroads in the maze of trying to treat MECFS. The decision taken had to do with the experience and perception of the person taking the decision
Before MECFS: a virus, bacteria, physical trauma, childbirth, vaccination, surgery.
Read 7 tweets
Jun 2
Rob Phair - Itaconate shunt hypothesis for MECFS
TCA cycle - itaconate not discussed prevalently within this cycle. The transformation with CoA-SH was believed to be the end of that part of the process.
Every carbon is avoiding the processes that lead to NAD. The shunt will reduce the amount of ATP depending on the amount of carbon going in the different directions.
Read 16 tweets
Jun 2
Kristian Sommerfelt - functional capacity questionnaire in MECFS
Deciding disability measurements and work risk capacity in MECFS pts - how to assess functional capacity?
Questions focus on clarifying/communicating restrictions and capacity for measurements
Read 9 tweets
Jun 2
Dr Jesper Mehlsen - Towards a uniform treatment regimen
There is knowledge in the Pathobiology of MECFS - using that to direct treatment
Neuro inflammation and human herpes virus - removal of EBV, cmv, hhv6. ; also decrease inflammation with mono/doxy (#remissionbiome ), LDN, aripripazol, SSRI, PEA, cox 2 inhibitors; ATR1 blockers - not one size fits all
Read 8 tweets
Jun 2
There is abnormal CD8 and T cell metabolism in MECFS
This phenomenon is characteristic f T cell fatigue in a reactivation environment
Exhausted cell identified by presence of transcription factors and inhibitory receptors
Read 11 tweets

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