Jon-Ruben van Rhijn

Lecturer Life Sciences: HU University of Applied Sciences | PhD in Neuroscience | Exotic animal keeper | Dancer | Runner | Tries to play guitar • He/Him ⬛🌫️⬜🟪

[Jon-Ruben van Rhijn @JRvanRhijn]

@ISLCPAIS This was an audience question. The organization stated that knowledge on these etiologies is also valuable, it is not the focus of the organization since they want to have the infection associated angle at the forefront. Though the welcome collaboration with associated themes

[Jon-Ruben van Rhijn @JRvanRhijn]

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

[Jon-Ruben van Rhijn @JRvanRhijn]

@ISLCPAIS What about noninfectious cases? Chemical exposure, extreme psychological distress leading to ME?

[Jon-Ruben van Rhijn @JRvanRhijn]

@DavidPutrino A crash leads to increased blood lactate - and putrino is suggesting continuous blood lactate monitoring as possible pacing support

[Jon-Ruben van Rhijn @JRvanRhijn]

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.

[Jon-Ruben van Rhijn @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

[Jon-Ruben van Rhijn @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!

[Jon-Ruben van Rhijn @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

[Jon-Ruben van Rhijn @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.

[Jon-Ruben van Rhijn @JRvanRhijn]

@DavidPutrino Mitochondrial transplantation following optic crush injury - autologous from a healthy muscle. Could this be an avenue. David Putrino is exploring this

[Jon-Ruben van Rhijn @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

[Jon-Ruben van Rhijn @JRvanRhijn]

@DavidPutrino We are not adequately evaluating what happens in our bodies after SARS-CoV-2 (regarding viral/bacterial reactivation)

[Jon-Ruben van Rhijn @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?

[Jon-Ruben van Rhijn @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

[Jon-Ruben van Rhijn @JRvanRhijn]

@DavidPutrino Learning from successes and failures. Eg. The LC-PAX trial. Ideas of why it failed can also help inform future research.

[Jon-Ruben van Rhijn @JRvanRhijn]

@DavidPutrino There are many others, but David skips to mystery 3

[Jon-Ruben van Rhijn @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.

[Jon-Ruben van Rhijn @JRvanRhijn]

@DavidPutrino Good point: should treatment approaches change depending on cause. Eg. Diabetes following COVID?

[Jon-Ruben van Rhijn @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

[Jon-Ruben van Rhijn @JRvanRhijn]

@DavidPutrino Main theme will be on 'mythbusting' - 3 mysteries on LC

[Jon-Ruben van Rhijn @JRvanRhijn]

@ISLCPAIS Q: fiber type specific effects and other waste products? - no separation of fiber types yet. No look into other waste products yet.

[Jon-Ruben van Rhijn @JRvanRhijn]

Time of the last parallel session at @ISLCPAIS. First on the PIPASC study on neuroinflammation after SARS-CoV-2 infection.

[Jon-Ruben van Rhijn @JRvanRhijn]

@ISLCPAIS Data suggests impaired autophagy and some aspects of increased muscle aging