Trial of CT38 for ME/CFS by Cortene Inc.: big claims being made...

How can they make money from us?? If this drug doesn't prove successful in trials, none of us will be trying it.

 

You do realize flimsy hypotheses are a dime a dozen.

Thats kinda the point, they are casting a wide net to find something their drug will work for so they can bring in the cash. Actual drug development works by designing a drug to work on a target (receptor, chemical etc). Inventing something then trying it on many disparate conditions with very separate mechanisms to try and find something they can work statistical magic on is snake oil looking for a market.

I know nothing i say will convince anyone who wants to believe, belief is not rational, anyone wants to believe go ahead, but belief is not science and flimsy attempts to invent logic doesn't make it so.

 

We just have to wait a few months. It could help or not. I am also sceptical, but i have some hope. I know that many of you saw all kinds of treatment being tested and none worked out, but i believe that there will be a medication in the future. The only question is when.

 

You echo my sentiments Madone. I am skeptical but a little hopeful too.

 

According to van Elzakker, this is based on the learned helplessness model.

https://twitter.com/user/status/965264865563676673


https://twitter.com/user/status/965313292154654728

 

@Dr Carrot The wired but tired and some cognitive symptoms feel similar to amphetamine comedown for me but the physical symptoms feel very different. One bonus with coming down is you know there's light at the end of the tunnel.

 

There's a new blog post about this here. I do have some cautious hope about this direction.

 

One of the steps in the Cortene group's hypothesis is a desensitization of the 5HT1A receptors. Wouldn't this suggest that a 5HT1A agonist could be another possible drug target? I know the drug Buspirone is a 5HT1A agonist but I have heard that pwME dont tolerate it very well. Thoughts?

 

A little surprised by the level of cynicism in this thread. Granted, a solid dose of skepticism is in order. I, for one, wouldn't put money on a positive outcome of this trial.

But...

But there are positives here.

Given the available info – really only Cort's blog – the trial design will be better than many we've seen. Bateman Horne's involvement should help ensure participants in the trial will actually have ME. Objective measurements from CPET (2-day? - it doesn't say) and Fitbit. PEM measured. Yay!

Bateman Horne's involvement also means that even if the trial fails some senior researchers will have gained additional knowledge about ME to help future research.

The fact that a private company is prepared to throw good money at ME could cause a severe case of FOMO in other pharmaceutical companies and ME could loose its status as Untouchable and become the Next Big Thing. Ok, so I wouldn't put money on that happening either, but dreaming allowed, right?

 

I doubt we'll have any truly successful clinical trials until we have sub-types but hopefully some of these failed trials can provide data that will help tease them out.

 

The timeframe is longer on this than I expected. In his first blog about this, Cort said, 'The trial is expected to take place in the first quarter of this year at a well-known ME/CFS expert’s clinic.' We've just had the first quarter so I thought it would be pretty much finished by now.

But now he says, 'Cortene is gearing up to seek FDA and institutional review board (IRB) approval... Such approval typically takes one month... Cortene is beginning the approval process and hopes that the trial can start in late April.... The trial will take place under the supervision of Dr. Lucinda Bateman and Suzanne Vernon PhD at the Bateman Horne Center(BHC) in Salt Lake City, Utah. (The trial is not open for enrollment yet)....

Also, 'because exercise capacity is affected by altitude, some altitude requirements may be necessary. The trial will include 18 patients from the Salt Lake City/Utah or similar areas.' I'd imagine it may take a while to recruit enough patients.

I like the sense of urgency, though...

 

Glad to see I'm not alone! The only way I can describe this feeling is that you're energised but calm, you feel connected to everyone around you, there are these delicious shivers down your back and across your scalp (it's like you can feel your hair growing), and you become very tactile and positive. You also feel a lot like you're inside the music. Ecstasy and house music feel like they were designed for each other (techno and/or drum-and-bass lovers may disagree, I suppose).

It's nothing at all like ME. When I crash, that sometimes feels a bit like a comedown (everything is depleted, you feel dehydrated and poisoned, and you get weepy), but it's much more like a comedown + flu + post-marathon exhaustion.

This is an entirely unscientific way to test this hypothesis, of course!

 

Is Urocortin II "CT38"?

 

Some interesting info on Wikipedia (take it with a pinch of salt, naturally):

'Infusion of Ucn2 into rat hearts resulted in an immediate and significant improvement in left ventricle function, increased coronary flow, significantly altered intracellular calcium handling and increased SR calcium'

There's also some info on vascular changes. So I'm wondering if this could tie into the calcium-ion channel problems and/or vascular problems theoretically identified by some researchers?

If so, is it possible the effects may not be due to the effects on stress systems in the body as claimed by Cortene, but due to handling calcium ions and addressing cardiovascular issues instead? Obviously, injections in the heart are different to tablets taken to (as the researchers claim) affect the brain.

I've got bad brain fog today, so I might be completely letting my biology teacher down!

https://en.m.wikipedia.org/wiki/Urocortin_II

I still think they're using a duff model of pathology, but is there anything useful here that can be cribbed by others?

 

Their neuroendocrine model seems very different from my understanding (and I've spent years reading the papers... They seem to be cherry-picking/speculating heavily). I will be extremely surprised if this "treatment" leads to remission.

This might not be what some people want to hear, but that's my prediction.

 

From what i remember they felt that patients with ME had high cortisol. It is not my case, and i know of others who have the same presentation. So if their hypothesis is wrong from the begining, how can we assume that this will be a safe drug for patients?

 

Cortene's model accounts for how ME patients typically have low cortisol, not high.

 

Please, show me where they say that directly on their website (not on someone’s blog)

 

There have been several inferences made that the Cortene group is signing off on Cort's blogs. If Cort has been mischaracterizing their hypothesis i'm sure they would have something to say about it.

Care to point out where on the Cortene website, or anywhere else for that matter, that it says that the Cortene group believes people with ME/CFS have high cortisol?

 

I haven't read anything about this drug or the trial, but FWIW, it's my understanding that many can start out with high cortisol, which eventually can lead to low levels. And/or some have high levels at times of the day when they should be lower (like at night), and low at the other times, when they should be higher (like in the morning). As with many aspects of this disease, I don't think it's a one-size-fits-all situation.