Discover and read the best of Twitter Threads about #iimec15
Most recents (15)
The 12th Biomedical Research into ME Colloquium - possibly the best yet
More interest from researchers than ever - justifying resources used/commitment given to make it work
@YoungEmerg @euromeresearch @EUROMEALL
#mecfs #brmec12 #iimec15 #YEMERG03 #EMERG23 #research #cpd
1/23
More interest from researchers than ever - justifying resources used/commitment given to make it work
@YoungEmerg @euromeresearch @EUROMEALL
#mecfs #brmec12 #iimec15 #YEMERG03 #EMERG23 #research #cpd
1/23
@YoungEmerg @euromeresearch @EUROMEALL Thanks to #BRMEC12 delegates from around the world coming together in a friendly atmosphere of 2 days/3 evenings of collaborative and productive discussions.
@YoungEmerg @euromeresearch @EUROMEALL
#mecfs #brmec12 #iimec15 #YEMERG03 #EMERG23 #research #cpd
2/23
@YoungEmerg @euromeresearch @EUROMEALL
#mecfs #brmec12 #iimec15 #YEMERG03 #EMERG23 #research #cpd
2/23
@YoungEmerg @euromeresearch @EUROMEALL Thanks especially to speakers and our amazing colloquium session chairs from @euromeresearch and @YoungEmerg
Many known collaborations formed -
@YoungEmerg @euromeresearch @EUROMEALL
#mecfs #brmec12 #iimec15 #YEMERG03 #EMERG23 #research #cpd
3/23
Many known collaborations formed -
@YoungEmerg @euromeresearch @EUROMEALL
#mecfs #brmec12 #iimec15 #YEMERG03 #EMERG23 #research #cpd
3/23
#IIMEC15 Ron Davis
He's wearing all black, because it's the "uniform of #MECFS". @DafoeWhitney doesn't do well with color, so he's used to wearing black
Start with TCA cycle
NAD is reduced to NADH, used to make ATP
Looking at part of pathway not in the textbooks - The itaconate shunt
NAD is reduced to NADH, used to make ATP
Looking at part of pathway not in the textbooks - The itaconate shunt
starts at cis-Aconitate
itaconate is converted to itaconyl-CoA with STK to
Up until 7 years ago, that was the end, then found CLYBL. Lab discovered what it does
itaconate is converted to itaconyl-CoA with STK to
Up until 7 years ago, that was the end, then found CLYBL. Lab discovered what it does
How do you access functional capacity?
5857 responses from #MECFS patients (online anonymous, spread via social media)
5857 responses from #MECFS patients (online anonymous, spread via social media)
Questions like "can you X? How often do you Y?" don't work, because it is context dependent. It depends on what else the patient has decided to do, doesn't take consequences into account
Listen to patients about what works and what doesn't work.
There isn't an approved medication for #MECFS
Symptomatic treatment can be applied to improve quality of life
Symptomatic treatment can be applied to improve quality of life
Andrea affected at 22 after mild infection (maybe EBV)
Extreme progression after a few months
Today fully bedbound
Extreme progression after a few months
Today fully bedbound
17 year old case study they published in 2022
"When a 17-year old girl is diagnosed..."
Girl had diary showing how severe Sx, which they plotted and showed fluctuations over many different time scales.
"When a 17-year old girl is diagnosed..."
Girl had diary showing how severe Sx, which they plotted and showed fluctuations over many different time scales.
65 million people world-wide have #MECFS, same number have #LongCOVID now
Has occurred in outbreaks, some with polio outbreaks
Has occurred in outbreaks, some with polio outbreaks
#MECFS symptoms: fatigue, unrefreshing sleep, orthostatic intolerance, cognitive impairment, sore throat, fever, muscular pain, etc
challenges of recognizing the facets of #LongCOVID
It's like trying to solve the Rubik's cube with changing colors
It's like trying to solve the Rubik's cube with changing colors
SCOPIMED study of #LongCovid
Study population minimum 6 months post Covid, but average 9 months
He mentioned funding from @patientled
Study population minimum 6 months post Covid, but average 9 months
He mentioned funding from @patientled
Gets samples from the clinic (Haukeland University Hospitals) from RituxME and CycloME clinical trials
Did metabolomics on the samples
Did metabolomics on the samples
Energy metabolism
main energy pathway under aerobic conditions
glucose ->pyruvate->Acetyl-CoA goes into Kreb cycle
(dependent on presence of oxygen)
main energy pathway under aerobic conditions
glucose ->pyruvate->Acetyl-CoA goes into Kreb cycle
(dependent on presence of oxygen)
Prof Karl J Tronstad - energy metabolism and associations to clinical data in ME
There is no unified hypothesis that everyone agrees on, but there are observations that are guiding research
Mechanism, treatments and biomarkers of #MECFS - investigating abnormalities in the clinic, biobank and lab
Staff consists of: registered nurses, research nurse, health care providers, occupational therapist, etc
biomedical approach based on NICE guidelines
Core values: deep respect for patient and individualized care
biomedical approach based on NICE guidelines
Core values: deep respect for patient and individualized care
SF36 fatigue scale and Fitbit HR, HRV, sleep, steps, etc. used for monitoring
4 step program - selected vitamins, minerals, drugs
4 step program - selected vitamins, minerals, drugs
#IIMEC15 Dr David Systrom
ME/CFS and Long COVID: Insights from Invasive
Cardiopulmonary Exercise Testing
ME/CFS and Long COVID: Insights from Invasive
Cardiopulmonary Exercise Testing
Invasive CPET - exertional intolerance cause elucidated well by this test
mouthpiece measuring gases
catheters - right internal jugular (important part of the test), left wrist to look at blood pressures, measure lactate & other biomarkers
mouthpiece measuring gases
catheters - right internal jugular (important part of the test), left wrist to look at blood pressures, measure lactate & other biomarkers
look at VO2 max, patients with ME and LC mildly impaired 70% of expected. If you stop there, might think you have simple deconditioning, but use of catheters show it's not.
Can rule out pulmonary mechanical limit to exercise. Don't see in ME or LC, unless the LC has been on… twitter.com/i/web/status/1…
Can rule out pulmonary mechanical limit to exercise. Don't see in ME or LC, unless the LC has been on… twitter.com/i/web/status/1…
#IIMEC15 Dr Bhupesh Prusty @BhupeshPrusty
Herpesvirus reactivation as a trigger for
mitochondrial dysfunction in ME/CFS
Herpesvirus reactivation as a trigger for
mitochondrial dysfunction in ME/CFS
Hypothesis: acute vs chronic contributors to #MECFS
Normally look into peripheral circulation, but it's connected with tissue
some patients have MCAS, connective tissue issues, microclots
Normally look into peripheral circulation, but it's connected with tissue
some patients have MCAS, connective tissue issues, microclots
think disease starts in brain, astrocytes, glial cells, muscle cells
Unifying hypothesis - post viral illness, viral reactivation
when we look peripherally, don't find it
Unifying hypothesis - post viral illness, viral reactivation
when we look peripherally, don't find it
First up at #IIMEC15: Professor Simon Carding
Research into ME/CFS in Norwich Research Park twitter.com/i/web/status/1…
Research into ME/CFS in Norwich Research Park twitter.com/i/web/status/1…
#MECFS is a multifactorial and complex disease - immune dysregulation, mitochondrial impairment, intestinal dysbiosis, viral infection, neuro-endocrine impairment.
Does #MECFS start in the gut? Microbiome - bacteria, viruses, fungi
Affects immune system fitness (keeps immune system functional), communications of gut-brain axis, influence mood, behavior, linked to greater than 90% of human diseases
Affects immune system fitness (keeps immune system functional), communications of gut-brain axis, influence mood, behavior, linked to greater than 90% of human diseases
Professor Simon Carding, #IIMEC15 conference chair opening the conference: Let's do this for #MECFS & #LongCovid
The latest ground breaking research into #MECFS research. Mission to uncover disease mechanisms for evidence intervention: viruses, autoimmunity, immune senescence; in addition: photobiomodulation, microbiota replacement therapy
A unique cluster of research institutions located within 1 KM
