Researcher Interactions Video: Science for ME Q&A with Dr Karl Morten, University of Oxford, Sept 2019 - Part 1 and 2

[It's M.E. Linda]

Managed to get through the videos, very slowly. Thank you so much @Andy and Dr Morten.

Some further questions/ideas which would be good to know at some point please?

- when Dr M referred to “the Biobank”, was he referring to the U.K. Biobank or the U.K. ME/CFS Biobank?

- when wanting to duplicate blood retrieval procedure (between Oxford, Newcastle, Spain & Poland - fingers crossed for some funding), I suggest they have conversations with the U.K. ME/CFS Biobank whose nurses already have a strict order/collection procedure when dealing with each patient’s appointment.

- has Dr M spoken with U.K. ME/CFS Biobank to see whether they have any Severe ME patients on a participant waiting list (Newcastle/Oxford directions)? Obviously the patient themselves would have to be approached to see whether they were prepared to go onto the Oxford study instead of (/as well as ? a future) ME Biobank study.

 

[Andy]

Managed to get through the videos, very slowly. Thank you so much @Andy and Dr Morten.

Some further questions/ideas which would be good to know at some point please?

Thanks for the kind words, I can answer some of those straight away.

- when Dr M referred to “the Biobank”, was he referring to the U.K. Biobank or the U.K. ME/CFS Biobank?

The UK ME/CFS Biobank.

- when wanting to duplicate blood retrieval procedure (between Oxford, Newcastle, Spain & Poland - fingers crossed for some funding), I suggest they have conversations with the U.K. ME/CFS Biobank whose nurses already have a strict order/collection procedure when dealing with each patient’s appointment.

Yes, good suggestion.

- has Dr M spoken with U.K. ME/CFS Biobank to see whether they have any Severe ME patients on a participant waiting list (Newcastle/Oxford directions)? Obviously the patient themselves would have to be approached to see whether they were prepared to go onto the Oxford study instead of (/as well as ? a future) ME Biobank study.

Again, a good suggestion. I'll make a note of both of your suggestions to make sure that Karl is aware of them but, as he mentions in the second video, he does keep an eye on the forum so I'd imagine he'll read them here.

 

[Ron]

Thanks Andy and Dr. Morten for taking the time to do this interview! Much appreciated.

 

[It's M.E. Linda]

Again, a good suggestion. I'll make a note of both of your suggestions to make sure that Karl is aware of them but, as he mentions in the second video, he does keep an eye on the forum so I'd imagine he'll read them here.

Thank you again Andy!

 

[wigglethemouse]

- when wanting to duplicate blood retrieval procedure (between Oxford, Newcastle, Spain & Poland - fingers crossed for some funding), I suggest they have conversations with the U.K. ME/CFS Biobank whose nurses already have a strict order/collection procedure when dealing with each patient’s appointment.

I'm wondering if the team at the ME/CFS Biobank processes blood on site at patients houses, or nearby facility? Karl talked about processing and handling needing to be almost immediate and consistent across "centers" for the type of work he wants to do.

For example, in this tweet you can see that the Stanford team brought the centrifuge with them to a severe patients home.


EDIT. Of course, always good to share best practices and learn from others.

 

[FMMM1]

I'm wondering if a larger study on mitochondrial fragmentation (check out Bhupesh Prusty's presentation at NIH Conference April 2019) might provide some clarity. I.e. is the "something in the blood" a real thing or just an effect of different sample preparation techniques? If it is just a sample preparation problem then what a coincidence i.e. since it creates exactly what you'd expect in ME a change in energy production!

Thank you to Andy and Karl; hopefully Karl can get the funding he needs.

 

[FMMM1]

I need to watch the videos again. I'm wondering if Ron's plasma swap experiment indicates that this is not something created by the storage conditions (using this anticoagulant or that)? E.g. plasma from controls (healthy people) didn't test positive on the nano-needle but plasma from people with ME did. I think Karl mentioned something about this in one of the videos.
@Simon

 

[Andy]

Hi, I just watched the second video. Dr Morten mentioned they are working with Dr Oltra in Valencia. He also says they're thinking of crowd funding some projects. Being a Spanish resident I can reclaim a whopping 75% of charity/public university etc donations for the first 150e and 30% after that.

Would be great if I could donate in Spain for any crowd funding. Can someone @ me if they set up anything and I'll post it on the Spanish ME group sites

Cheers!

Hi @Tbird , do you know if I would be right in assuming that you can only reclaim that money if the donation is to a Spanish based charity or public university?

 

[wigglethemouse]

Hi @Andy, was there any "behind the camera" discussion on Karl Morten's phenylalanine work which was brought up on the original question thread.

You found that cellular phenylalanine is increased in ME patients.

Do you have any hypothesis on why this may be happening ?

I ask as there was a little blackout booboo at the Emerge conference, if I remember right, where one presenter described in words interesting phenylalanine data that they were going to publish.....

 

[Andy]

Hi @Andy, was there any "behind the camera" discussion on Karl Morten's phenylalanine work which was brought up on the original question thread.

I ask as there was a little blackout booboo at the Emerge conference, if I remember right, where one presenter described in words interesting phenylalanine data that they were going to publish.....

From memory, no. I think I can be safe in saying that, at the moment, Karl has no explanation for why it might be the case, he was merely reporting what has been found in his work so far, and that he would need to investigate it further to 1. establish if the finding could be replicated, and 2. if it can be replicated, figure out why it is increased.

 

[Aroa]

Hi @Tbird , do you know if I would be right in assuming that you can only reclaim that money if the donation is to a Spanish based charity or public university?

I think that because the charity needs to meet the requirements of the Spanish law 49/2002 : article 2 and 3,
https://www.boe.es/buscar/act.php?id=BOE-A-2002-25039

It would be difficult for a small foreign charity to do it due to administrative costs , unlike well known international organisations. But I am not at all an expert.