• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Coverage from IACFS/ME Florida conference, 27-30 Oct 2016

Ben H

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
Geoffrey Hallmann said:
#IACFSMEConf

Fluge expanded upon his latest study. Feels that there is a metabolic obstruction in the central energy pathway that causes a profound lack of energy. He notes that the gene expressions indicate the PDK enzymes increase in both males and females - however there is a different compensation in women (something unsurprising - ie the differences). The 153 person study will look to wind up in late 2017. He also examined 20 standard amino acids and derivatives in 200 patients and 100 controls. Fluge referred to a variety of other studies of relevance from around the world.
Click to expand...

Very very interested in this. The more research comes out, the more the pieces of the puzzle seem to be converging together. Very pleased Fluge and Mella have been looking at this aswell.


B
 
R

RL_sparky

Senior Member
Messages
379
Location
California
AndyPR said:
Don't know who but I'm sure I saw some comment that we can expect this to go up on Youtube at some point, however I can't now find that comment, hopefully I didn't imagine it.
Click to expand...

I don't think it will make it's way to YouTube. I can't find the link at the moment but they want in the $250.00 range for a DVD package.
 
aimossy

aimossy

Senior Member
Messages
1,106
@Sasha based on tweets I think they suggested that nothing structurally wrong with actual mitochondria. They did some studies that showed that problem may be coming from the blood not mito itself. Exposed muscle cells to blood of ME/CFS patients and to blood of healthy people and the muscle acted differently. Someone please correct me if I am wrong though!
 
Last edited:
G

Gijs

Senior Member
Messages
691
paul80 said:
But 2/3 have got significant improvement. How can you not be optimistic about that?
Click to expand...

First, i don't know if it is really so significant for the 2/3, it is much less. Second, I think that a subgroup will get 'better' anyway. Third, i don't see any objective measurement at this point and a lot of speculation, fourth, a German group didn't find improvement at all (N=10) etc...
 
aimossy

aimossy

Senior Member
Messages
1,106
So basically there's no point to any of their work and they should pack up and head back to their usual areas @Gijs?

There is healthy scepticism and then there is bombing everything with a negative napalm. I think this isn't so negative as all that. Nothings perfect, but they are finding out useful information. I don't think that they think Ritux will be some panacea themselves and they basically state this in their talks.

I'd rather wait on the paper before napalming researchers making huge efforts, who work in incredibly ethical fashion and actually seem to be kicking more butt in MECFS than many have thus far! They will be the first to publish a larger cohort of metabolism work too by the sounds of it, and they credit other researchers who have also helped inform their work. I disagree with your assessment.
 
G

Gijs

Senior Member
Messages
691
aimossy said:
So basically there's no point to any of their work and they should pack up and head back to their usual areas @Gijs?

There is healthy scepticism and then there is bombing everything with a negative napalm. I think this isn't so negative as all that. Nothings perfect, but they are finding out useful information. I don't think that they think Ritux will be some panacea themselves and they basically state this in their talks.

I'd rather wait on the paper before napalming researchers making huge efforts, who work in incredibly ethical fashion and actually seem to be kicking more butt in MECFS than many have thus far! They will be the first to publish a larger cohort of metabolism work too by the sounds of it, and they credit other researchers who have also helped inform their work. I disagree with your assessment.
Click to expand...

I read a lot of inappropriate rhetorical metaphors, emotion and things i don't write. So we disagree, no problem.
 
G

greeneagledown

Senior Member
Messages
213
Gijs said:
fourth, a German group didn't find improvement at all (N=10) etc...
Click to expand...

I did not know this. Do you have a link? Was this published or at least discussed at a conference or something? Do we know what case definition was used? How many infusions? How long the patients were monitored after the first infusions?
 
G

greeneagledown

Senior Member
Messages
213
Based on the preliminary evidence, my guess is that Rituximab will send maybe 20-25% of patients who would not have otherwise recovered into long-term remission after just 6 infusions. So it won't be the answer for a majority of patients, but I think that's still pretty darn significant.
 
You must log in or register to reply here.