The Biggest Chronic Fatigue Syndrome Treatment Trial Begins: Fluge/Mella On Rituximab -

[Sidereal]

From the Simmaron article, genetics study section:

"To further elucidate possible clues, we are also working on exom-sequencing of families with many affected individuals among first- and second-degree relatives, sequencing all coding parts of the genome (with flanking introns) both from affected and healthy family members."

"exom-sequencing" and "flanking introns"? The mind boggles! (I've never heard of these before!)

It's all Norwegian to me.

 

[lansbergen]

It's all Norwegian to me.

Genes have exons and introns. http://en.wikipedia.org/wiki/Exon

 

[Valentijn]

The exome is the part of the genome (all the DNA on our chromosomes) composed of exons, which are directly transcribed and then translated into proteins (enzymes) in the body. Each gene usually has multiple exons, and in between the exons are introns, which don't get translated but often impact how the gene is translated.

So exome sequencing is only looking at a fraction of the genome, which can make it quite a bit cheaper. But most disease-causing variations in SNPs (each A, C, G, or T in DNA) are in the exome, so it can be a very cost-effective method to find important mutations. The current cheapest cost for the public is about $1,300 per person, but it sounds like researchers can get cheaper rates.

 

[Jonathan Edwards]

The Open Medicine Institute have a Rituximab/Valcyte RCT listed as their first research priority on a list that's been up for a couple of years now:

http://phoenixrising.me/archives/17128

It's costed at $7.65 million and there's been no update on it: presumably they haven't been successful in getting funding.

Prof. Carmen Scheibenbogen in Germany had been interested in doing a Rituximab trial but I think she ran into problems and abandoned it.

I'm not aware of any other country running a trial.

@Jonathan Edwards, do you know of a rituximab trial on ME/CFS, other than the UK and Norwegian ones?

Not that I know of.

 

[Simon]

The Open Medicine Institute have a Rituximab/Valcyte RCT listed as their first research priority on a list that's been up for a couple of years now:

http://phoenixrising.me/archives/17128

See to remember hearing a while back they'd abandoned workng with rtx after one patient had a serious adverse reaction, but can't be certain. Anyone?

 

[deleder2k]

I know they are still treating people with RTX/Valcyte there. It is some sort of an open trial.

 

[bertiedog]

See to remember hearing a while back they'd abandoned workng with rtx after one patient had a serious adverse reaction, but can't be certain. Anyone?

Having just had my genes mapped through 23andme and Promethease it turns out I wouldn't be able to have Rutuximab anyway as I lack the CYP enzyme to be able to detoxify it. Not sure if this means I would get a bad reaction to it but its on the list for drugs I shouldn't have.

Pam

 

[Avena]

Having just had my genes mapped through 23andme

Has 23andme started to do health related gene tests again?

 

[A.B.]

To what degree can endothelial dysfunction explain ME symptoms?

If it's causing sympathetic nervous activation, why did SNS activity seemingly have a protective effect in Wyller's Clonidine study? Or is increased SNS activity precisely an attempt by the body to compensate for endothelial dysfunction?

 

[deleder2k]

This is from Fluge's application to the Research Council of Norway in 2013. I have no information whether this is still his hypothesis.

In their sub study they are checking whether FMD correlates with ME symptoms. The result of that study will be very interesting.

 

[Gijs]

To what degree can endothelial dysfunction explain ME symptoms?

If it's causing sympathetic nervous activation, why did SNS activity seemingly have a protective effect in Wyller's Clonidine study? Or is increased SNS activity precisely an attempt by the body to compensate for endothelial dysfunction?

This is the one million dollar question for me. I hope there new research will come up with answers. If we know what cause the abnormal activity of the ANS we know the cause of this disease. It is so complicated. Also the CNS microglia can be the cause.