Øystein Fluge and Olav Mella interviewed on BBC Radio

[deleder2k]

Øystein Fluge and Olav Mella interviewed on BBC Radio (Naked Scientists) about Rituximab and their B-cell theory

http://www.bbc.co.uk/programmes/p02ldh8b

Interview from 39:22

 

[Aurator]

The discussion was easily digestible for lay people, including me.
It was great to hear Fluge and Mella's voices. I wonder whether they know just how many people throughout the world are hanging on their every word. Poor chaps! Not sure I'd want to be in their shoes.

 

[Gemini]

Øystein Fluge and Olav Mella interviewed on BBC Radio (Naked Scientists) about Rituximab and their B-cell theory

Excellent interview!

Interesting Drs. Fluge & Mella discuss blood circulation abnormalities re: their B-cell theory.

 

[deleder2k]

@Jonathan Edwards Do you agree on what they say and their hypothesis, or do you have see it from a slightly different angle?

 

[rosamary]

Listening to this over my third glass of wine tonight made me so very elated!

I think, if you get all of the severely affected patients and really experimented with this type of drug (gently for each patient), there would be some results.

But I am just a wine swigging nobody: so that's just my gut feeling.

 

[Jonathan Edwards]

@Jonathan Edwards Do you agree on what they say and their hypothesis, or do you have see it from a slightly different angle?

I think Oystein and Olav were very impressive - keeping it intelligible but making sure the details were right. I do not know whether they are right on the blood vessel control but I think it is as good an idea as any. There was nothing I would disagree with. I always notice when they speak how sensible and thorough they are - and also the humility that goes with careful science. Those who have recently indicated they are 'unimpressed' must I think have a fairly skewed idea of what good science looks like.

 

[Sasha]

Sorry, I have problems concentrating on audio - can someone tell me in a quick sentence what they said about blood vessel control? Was it to do with OI?

 

[Jonathan Edwards]

Sorry, I have problems concentrating on audio - can someone tell me in a quick sentence what they said about blood vessel control? Was it to do with OI?

Oystein thinks some patients may have autoantibodies targeting molecules involved in fine regulation of blood flow - I think partly in relation to OI but also brain fog and 'feeling as if running a marathon'. He has been interested in nitric oxide but I do not think he would want to predict a precise target molecule.

 

[Sasha]

Oystein thinks some patients may have autoantibodies targeting molecules involved in fine regulation of blood flow - I think partly in relation to OI but also brain fog and 'feeling as if running a marathon'. He has been interested in nitric oxide but I do not think he would want to predict a precise target molecule.

Very interesting (to me, anyway, since I have OI). But I've seen figures that put the prevalence of OI in ME as high as 95% or something - which makes me a bit pessimistic about OI being a means of identifying a subset who might respond to Rituximab.

Unless that 95% figure is rubbish. Does anyone know?

 

[Kati]

Very interesting (to me, anyway, since I have OI). But I've seen figures that put the prevalence of OI in ME as high as 95% or something - which makes me a bit pessimistic about OI being a means of identifying a subset who might respond to Rituximab.

Unless that 95% figure is rubbish. Does anyone know?

@Sasha I would say it's more complicated than that.
Myself, I have POT (diagnosed by Dr Klimas), viral onset (documented EBV IgM+) and I have not responded to Rituximab. Why, I don't know. i really wish I had responded.

 

[Sasha]

Sorry to hear that, @Kati.

 

[deleder2k]

Very interesting (to me, anyway, since I have OI). But I've seen figures that put the prevalence of OI in ME as high as 95% or something - which makes me a bit pessimistic about OI being a means of identifying a subset who might respond to Rituximab.

Unless that 95% figure is rubbish. Does anyone know?

I think it depends what you classify OI as. I am not sure if OI will help us identifying who responds to RTX. From what I've heard it has something to do with memory B-cells that RTX does not wipe out.

 

[Kati]

Sorry to hear that, @Kati.

No worries @Sasha I am beyond that. I am thankful for our experts and researchers going the extra mile for us. i am hopeful there will be a breakthrough soon, despite the political climate and the lack of funding. The recent papers provided very interesting clues.

 

[Bob]

Myself, I have POT (diagnosed by Dr Klimas), viral onset (documented EBV IgM+) and I have not responded to Rituximab. Why, I don't know. i really wish I had responded.

Unfortunately, you're not the only person on the forum who hasn't responded to Rituximab. I have a hunch that a lot of us won't respond to Rituximab. (Not meaning to be pessimistic.) But Fluge and Mella are testing other treatments for non-responders, so there's still possibilities in the pipe-line.

 

[Bob]

I'm not keen on Fluge and Mella's hypothesis re blood vessels, but I'm open to possibilities, and the main thing is whether the treatment works or not. They must have their reasons for the hypothesis, and I can see how autoantibodies that affect blood vessels could potentially induce brain fog and neurological symptoms, but I'm struggling to see how it could invoke flu-like and other immunological symptoms, unless a lack of blood flow to regions of the brain (e.g. pituitary/hypothalamus) might interfere with immunological function.

 

[Kati]

Unfortunately, you're not the only person on the forum who hasn't responded to Rituximab. I have a hunch that a lot of us won't respond to Rituximab.

But then, every responder and every non-responder is providing clues to the astute as of why one is responding or not. And we have astute researchers.

One question for @Jonathan Edwards if I may, would Cyclophosphamide kill plasma cells and could that make a difference between responding and non-responding?

And for @deleder2k do you know if non-responders to Rituximab have been given Cyclo?

 

[Kati]

I'm not keen on Fluge and Mella's hypothesis re blood vessels, but I'm open to possibilities, and the main thing is whether the treatment works or not. They must have their reasons for the hypothesis, and I can see how autoantibodies that affect blood vessels could potentially induce brain fog and neurological symptoms, but I'm struggling to see how it could invoke flu-like and other immunological symptoms.

We may well have disease in the brain where Rituximab may not be able to access, at least for some of us.

 

[DanME]

Very good interview. Maybe a bit short though. But I am extremely impressed by their approach and research.

I like their idea, that the fine regulation of dynamic blood flow may be the core problem in ME (or at least in a subset). It really sounds like an idea out of the box. And we def need that.

We pretty much all have some form of OI, which is the loss of dynamic blood perfusion while sitting and standing. Most of us feel better lying down with a decrease in symptoms. It's way easier for the body to equalize blood perfusion beeing in a supine position. Also muscle excersise goes hand in hand with an increase in blood flow (sometimes up to 200%). What would happen, if the blood doesn't get to the muscles fast enough...Faster reach of the anaerobic threshold, more lactic acid, and the disruption of muscle metabolism, which leads to muscle fatigue. Maybe even cramps!? Also low blood volume could be a symptom of inflexible vessels. Some of us feel better with saline infusions, wich increase the overall blood volume. Brain fog including poor concentration and headaches could all be caused by the loss of dynamic blood perfusion in he brain. Also ataxia.

Symptoms I cannot really explain with their idea: flu like symptoms, sensory overload (but you have that in migraines, too, hm), sleep disruption, delayed PEM...

 

[nandixon]

We may well have disease in the brain where Rituximab may not be able to access, at least for some of us.

Yes, I've been hoping for a while now that they might consider studying the use a blood-brain barrier (BBB) disruption technique in conjunction with the rituximab to get better penetration into the brain/CNS.

 

[Marky90]

The recurrent infections many experience could very well be due to autoimmunity? I dont see how it doesnt fit. I think the blood vessel hypophesis sounds very plausible, but so do many ideas hehe. We will have to wait and see! Exiting times indeed. I think we are closing in fast, at least treatment wise.