Back at the @ISLCPAIS , bit too late because of traffic issues. First talk is on the creation, goals and aims of the ilsc-PAIS working group
Time for the last talk by @DavidPutrino. But first some explanations about award tht are in the works by ILSC-PAIS. Proposal request will open somewhere in October.
Replying to @JRvanRhijn @DavidPutrino
Q: from Q fever advocacy - is there a way of measuring effects of Mito related symptoms? - no, not conventional. But putrino measures resting metabolic rate. Seems people with Mito dysfunction have higher BMR, through burning carbs
Replying to @JRvanRhijn @DavidPutrino
Takeaways:
1: treat drivers, not symptoms
2: complexity isn't mysterious
3: run towards complexity, not away from it.
For me this all boils down to wicked problems, interdisciplinary approaches and daring to take steps into the unknown. Hope the @ISLCPAIS makes that happen!
Replying to @JRvanRhijn @DavidPutrino
What do we need next: testing for large arrays of autoantibody activity. We now only have set specific tests.
Interventions: IVIG, FcRn inhibitors - make these more available
Next big step: personalized medicine eg. CAR-T
Replying to @JRvanRhijn @DavidPutrino
Autoimmunity: study: expose human IgG from controls and LC to human brain tissue. Antibodies are reacting to human brain tissue. Injecting mice with the AABs from pwLC with pain as symptom showed pain.
Replying to @JRvanRhijn @DavidPutrino
Mitochondrial transplantation following optic crush injury - autologous from a healthy muscle. Could this be an avenue. David Putrino is exploring this
Replying to @JRvanRhijn @DavidPutrino
mitochondrial dysfunction: many papers that show that this is happening in LC. But trying things in patients is trial and error. Know what exactly is wrong in the Krebs cycle would be a nice next step. But probably very individual
Replying to @JRvanRhijn @DavidPutrino
We are not adequately evaluating what happens in our bodies after SARS-CoV-2 (regarding viral/bacterial reactivation)
Replying to @JRvanRhijn @DavidPutrino
Viral reactivation: sustained reactivation in pwLC is possible. Also bacterial reactivation, bartonella henselae. Think broad about viral persistence, what else has SARS-CoV-2 riled up?
Replying to @JRvanRhijn @DavidPutrino
What do we need next: subtyping with viral persistence as a basis. Medications that can penetrate immune privileged sites if the virus is still there. Intracellular targeting of SARS-COV-2
Replying to @JRvanRhijn @DavidPutrino
Learning from successes and failures. Eg. The LC-PAX trial. Ideas of why it failed can also help inform future research.
Replying to @JRvanRhijn @DavidPutrino
There are many others, but David skips to mystery 3
Replying to @JRvanRhijn @DavidPutrino
Mystery 2- exploration of LC along 10 key symptoms
1: viral persistence. Lots of evidence for virus in some way sticking around. Eg antigen persistence in people with LC more frequent.
Replying to @JRvanRhijn @DavidPutrino
Good point: should treatment approaches change depending on cause. Eg. Diabetes following COVID?
Replying to @JRvanRhijn @DavidPutrino
Mystery 1: we don't know how to diagnose LC
Mystery 2: we don't know why they are so sick
Mystery 3: we don't know how to treat LC
Replying to @JRvanRhijn @DavidPutrino
Main theme will be on 'mythbusting' - 3 mysteries on LC
Time of the last parallel session at @ISLCPAIS. First on the PIPASC study on neuroinflammation after SARS-CoV-2 infection.
Replying to @JRvanRhijn @ISLCPAIS
Data suggests impaired autophagy and some aspects of increased muscle aging
