Isabel Ramirez-Burnett Profile picture
Jun 2 17 tweets 4 min read Twitter logo Read on Twitter
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
#MECFS is a multifactorial and complex disease, we are learning a lot from #longcovid - microbe infection driven by exhaustion of the immune system.
Microbes essential for immune system fitness, essential processing, communication of gut-brain axis. These are not just bacteria, but virus, fungi all working together. Disturbance in microbiome is linked to nearly every human disease.
10-25% of #MECFS patients are severe, yet only 0.5% are included in research
Viruses in severe #MECFS patients: virus are good at hiding, reactivate, kill the cell, interact with lots of sensors in the body, particularly the immune system. They can activate or suppress immune function
The first comprehensive description of gut microbiome in severe pts, identify changes, viral clusters, unique virus-bacteria interactions, contribute to alterations in gut bacteria described in these patients
Autoimmunity in severe pts: reactivity to their own gut microbiome. Reactivity in serum with own and foreign microbes. pts have lower levels of antibodies, increase antibody reactivity to specific gut bacteria, potential explanation on why there are more infections
Microbiome is a transformative platform for health and healthcare: FMT-impact in aging, but also #MECFS - intestinal permeability increased from old to young mice FMT and vice versa. Microbiota modulation may be a targeted therapy
FMT and #MECFS 60 mild-severe in a trial: 42 responded; 58% symptom free after 15-20 yrs, GI symptoms 88% resolved.
Restore ME : FMT capsules are called "neptune capsules" because it is next to uranus
Expected start of the study is Dec 2023/Jan2024
A trial of photo-biomodulation will also be starting as a therapy for ME. Promising application in cell based therapies, such as end stage liver disease and perhaps ME. ME pts have high levels of oxidative stress, limited ATP production.
Participants for the study need to be over 18, dx with ME and live in the UK for phase 1 with n=10
Light me up will be a remote study. Waiting on final approvals, protocol is ready.
A lot of international and multidisciplinary teams across the world working to bring #MECFS research to the forefront, including training and networking young scientist and clinicians to have the next generation continue the important work of ME, #longcovid and others

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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
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
Read 18 tweets

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