Jarred Younger Starts Short YouTube Video Series.

[Remy]

The first short video deals with neuroinflammation...it's only about 6 min long and a good introduction to the topic.

 

[keepinghopealive]

Thanks Remy. Your link led me to this, which is also DEFINITELY worth watching.

 

[Cort]

The first short video deals with neuroinflammation...it's only about 6 min long and a good introduction to the topic.

Good for Younger! He knows what to do...The guy is smart in so many ways...Stanford lost out when they let him go. He's really flourishing with his own lab.

 

[Cort]

Good to see as a researcher who has an open mind.

My thoughts on rituximab has always been that before one should try it that they should be able to at a minimum identify which of those two groups one falls into, outside of rtx research. Younger also makes a good mention that medicine cant really detect chronic active infections but needs to marry up several other tests such as cytokines etc that are commonly elevated in infection or in autoimmune disorders.

I hope the Norwegian researchers can help distinguish between these two groups as it could be a nightmare for the wrong people and a miracle for the correct people. It seems they are as it appears they are selecting specific patients for the rtx trials.

Younger definitely has increased my interest.

Yah, the potential for problems with Rituximab is big if you have a chronic infection...I wonder if they are prechecking their patients labs or doing testing on them...?? I imagine that they are not. I believe that Dr. Peterson is a bit worried about this...It's going to be interesting.

 

[Veet]

Thanks Remy. Your link led me to this, which is also DEFINITELY worth watching.

Thanks for this vid. I was expecting something more complex, But in fact it very simply clarified some of my experiences. I can stop looking for underlying reasons for my POTS-lite; my recent observation of feeling no motivation to do anything much, fits into his observations of inflamed amygdala and hypothalamus leading to poor motivation; fatigue is neither a symptom nor a disease: it is an incredibly general alarm system, tells us just that there's dysregulation somewhere. We are so lucky to have the young Younger on our side for the long haul.

 

[keepinghopealive]

Thanks for this vid. I was expecting something more complex, But in fact it very simply clarified some of my experiences. I can stop looking for underlying reasons for my POTS-lite; my recent observation of feeling no motivation to do anything much, fits into his observations of inflamed amygdala and hypothalamus leading to poor motivation; fatigue is neither a symptom nor a disease: it is an incredibly general alarm system, tells us just that there's dysregulation somewhere. We are so lucky to have the young Younger on our side for the long haul.

We are lucky indeed! Except I certainly hope "the long haul" will be a short drive.

I really wish the interviewer had asked Jarred how soon he thinks an effective treatment will be available. 1 year? 3 years? 5?

 

[Brenda Flippen]

Good to see as a researcher who has an open mind.

I liked how he said that we will probably find many different groups within cfs which has been mentioned for awhile when referring to subgroups.

The other view of his i thought was good, he says that a large percentage of cfsers have an underfunctioning immune system and probably have low grade chronic infections and another large group have a severe infection or immune hit that has cleared but has left the immune system switched on, autoinflammatory effect.

My thoughts on rituximab has always been that before one should try it that they should be able to at a minimum identify which of those two groups one falls into, outside of rtx research. Younger also makes a good mention that medicine cant really detect chronic active infections but needs to marry up several other tests such as cytokines etc that are commonly elevated in infection or in autoimmune disorders.

I hope the Norwegian researchers can help distinguish between these two groups as it could be a nightmare for the wrong people and a miracle for the correct people. It seems they are as it appears they are selecting specific patients for the rtx trials.

Younger definitely has increased my interest.

$imply good to see someone with an OPEN mind ...

 

[Tony L]

Yah, the potential for problems with Rituximab is big if you have a chronic infection...I wonder if they are prechecking their patients labs or doing testing on them...?? I imagine that they are not. I believe that Dr. Peterson is a bit worried about this...It's going to be interesting.

Cort, from what I'm seeing in the literature, cell-mediated therapies are the future. For example the recent thread
on the effective use of engineered T cells against a B cell tumor shows how in the cancer field researchers are able to harness the power of the immune system (in a more natural way) to remove malignant cell types/populations. This targeting will become more subtle/specific, so reducing risks to the patient compared with a crude deletion via Rituximab.

The Rituximab data to come may prove significant and perhaps some sufferers will benefit directly from this (in the short term), but I think the guys at NIH will point the way to much safer and effective therapies in the next couple of years.

 

[Who Me?]

but I think the guys at NIH will point the way to much safer and effective therapies in the next couple of years.

@Tony L thats it. I'll try alot but I'd never go near rituximab or anything like it until they have a very clear picture of the subsets. But a couple years? My cynical self says no. And even if it is approved go find a doc in your area who will administer it.

My understanding is everyone in the Norway study was referred by neurologists. Can someone help?

 

[Tony L]

@Tony L thats it. I'll try alot but I'd never go near rituximab or anything like it until they have a very clear picture of the subsets. But a couple years? My cynical self says no. And even if it is approved go find a doc in your area who will administer it.

What I meant, was that I think as the US programs progress over the next couple of years they will identify disease types and potential therapies for each, then relevant experts in those areas will take these forward, to actually develop the therapies through to trial. That is rather longer than a couple of years.

This may be where those US grants for ME, available for researchers in other fields will be important, for example a researcher developing cell mediated therapies for B cell malignancy might be interested in modifying these for ME. If the expertise available is harnessed then things could obviously go quicker.

So that is where Rituximab trials or trials of other existing drugs etc (Jarred's trials) are so important as they may offer some relief in the short-term while the science progresses to drive the development of better therapies.

Would I touch Rituximab? If you have a compromised immunity to virus then this type of depletion just doesn't sound like a good plan of action. Having suffered regular viral infections from early in life 'till about 6 years ago (aged 48), I assume I have a problem with innate immunity. Why the sudden change at 48 ? No idea, but at the same time inflammatory issues have become much more prominent in my disease than before. The last thing I ever want is to return regular infections, never again please!. My immune system may now be even more screwed than the one I began life with, but at least it's protecting me against virus now.

We need the science on ME to catch up asap if sufferers are to make real informed choices about the use of drugs like these.