Community Symposium on molecular basis of MECFS! DISCUSSION THREAD!

[bertiedog]

Does anybody have a link to Dr Light's slides?

Thanks

Pam

 

[hixxy]

Yes I agree. My ME started when I was 9 / 10 just as pubescent hormones start to 'do their thing'. The change in gender ratio between prepubescents and post pubescents also confirms that this must be so.

What's the difference in gender ratios for pre and post pubescent?

 

[lilpink]

What's the difference in gender ratios for pre and post pubescent?

Off the top of my head, so don't quote me exactly it's 1:1 pre-puberty and about 4:1 ish female to male post puberty.

 

[aimossy]

Mark Davis findings so far.. WOW! Fingers crossed.

@Jonathan Edwards have you had a chance to view this talk at all by Immunologist Mark Davis. It is at 5:14:30 HERE. If people want to skip the wee education session on immune things the meat of what he is doing starts from approx. 5:27:30 HERE.

Thanks @AndyPR!

 

[AndyPR]

Mark Davis findings so far.. WOW! Fingers crossed.

@Jonathan Edwards have you had a chance to view this talk at all by Immunologist Mark Davis. It is at 5:14:30 (I think I have copied the URL below at about that time). If people want to skip the wee education session on immune things the meat of what he is doing starts from 5:27:30.

I can't seem to be able to give the link without it opening up like above to embed an empty video! Can anyone kindly help me out. A right click on the video comes up with URL options though.

The forum software will automatically convert any Youtube link and embed the video, but importantly, it won't convert any start time that might exist in your Youtube URL.

In order to post a link to a particular time in a Youtube video you need to post it like this - click here
To do this, type whatever text you want to "contain" the URL, highlight that text and hit the Link button (the paperclip button in the options just above the window you are typing in), then add the link into the box that appears. Click Insert and you should be done. It's not possible, as far as I know, to embed a video in a post to start at a particular time.

 

[aimossy]

Thanks @AndyPR all fixed!!

 

[user9876]

But why can they not get a supply form Bayer, not being profitable makes no sense then they would stop making it altogether. Why do they still make it at all?
If it was about profit they could simply charge him more then the production cost, if he agreed to pay 2-5x above cost they make profit, he gets drug. Pure capitalism.

If its not under patent then anyone can produce it so you can charge a reasonable markup on manufacture costs but if you are making too much then someone else could just start a competitive manufacturing operation. This second manufacturer wouldn't have the burden of covering the cost of clinical trials and therefore could charge less. The problem is the trial results are public and everyone can take advantage (economists talk of public good).

 

[neweimear]

@user9876 why would the second manufacturer not have to pay for clinical trials?? Who is going to pay for the elusive trials? I dont understand!

 

[user9876]

@user9876 why would the second manufacturer not have to pay for clinical trials?? Who is going to pay for the elusive trials? I dont understand!

Once trials are done for a drug then it can become licensed. Patents protect a companies R&D investment so that others cannot manufacture and sell the drug unless done under license. But patents are time limited (2o years I think and increasingly expensive over time) so once they run out then anyone can manufacture and sell (the licence is for the drug not the manufacturer). If a drug is already out of patent then there is no advantage for a company to do new drug trials (unless they have a manufacturing method that is a trade secret and gives an advantage).

Of course a drug company could become interested in a small scale trial to test the concept of the signal blocking but then design a better drug with more specific blocking properties which could be patented (but development cycles would be increased).

 

[AndyPR]

Who is going to pay for the elusive trials?

That obviously is the key question.

So drugs companies, broadly speaking, will only be interested in funding drugs trials if 1. there is a good chance of the trial being successful, 2. they hold the patent for the drug being used and 3. they believe that they will be able to make enough of a profit in the future to offset the large cost of the trial(s).

[ETA: A drugs manufacturer who holds the patent is able to control the production. They can make it themselves exclusively, which is what they normally do.]

So the main issue is that Suramin is out of patent and is cheap to produce. In theory, this should be a good thing for us but it impacts on points 2 and 3 above. Hypothetically, if Bauer paid the $20 million (or whatever it would cost) to run sufficient trials that successfully proved Suramin as a treatment for ME, then they will have done all the expensive legwork and all other manufacturers would need to do is set up a plant and profit themselves from the situation created, without having that burden of the costs of the trial.

In addition, Bayer are not currently interested in ME - it's not the "right" type of illness that they want to treat. So you might argue that another company could pay for the trials and then set up production but, if a large market was proven for Suramin by those trials, would Bayer stay out of it? Especially if they haven't had to shell out the trial costs, and with the costs of their existing production facilities already paid for, that could be almost pure profit for them - this is my guess why other companies might be reluctant to enter into trials. So we have an almost stand-off situation where drug companies are reluctant to make the first move of committing to trials.

Please note this all my own guesswork informed by Naviaux's explanation from the symposium - I have no insider information.

 

[Hutan]

So the main issue is that Suramin is out of patent and is cheap to produce.

And there's the issue that the point of the trial might be mainly to identify the mechanism of the disease. Once that is done, there might be more effective drugs around or able to be produced that don't have the side effects of suramin. So even a successful trial might not lead to a big or lasting market specifically for suramin.

 

[neweimear]

So basically suramin is a dead duck. I wish they would explore some immunomodulatory drugs that might at least improve our quality of life. I believe there are drugs sitting there that can help us. But how can that be moved forward....so exhausting, we are still far away from treatment. Rituximab is the only thing that may help some of us. In a way I think we will have to wait for NIH trials through the intramural study to find treatment options. That is a decade away. I am quite disheartened!!

 

[Seven7]

I have a suggestion, maybe ask the presenters how can your current research advance CFS.
This will make the presenters think about new applications for their ideas instead of reusing their generic presentations.
Or I don't know like find a way as you invite people, to think beforehand how to advance the cfs field. And maybe granting some research money to the best idea.

 

[Skycloud]

Surely at this stage all that's needed is enough suramin to make the point one way or the other that it's a step in the right direction. Confirming if the hypothesis is actually a useful one, and how useful. I'm just hoping enough can be 'borrowed' from 'somebody', or a little pilot study in collaboration with some other body like London School of Hygiene and Tropical Medicine, who apparently have some.

One step at a time.

edit for proper english

 

[mango]

Does anybody have a link to Dr Light's slides?

Here are some of them:

http://s1377.photobucket.com/user/greenmango/library/OMF Symposium 2017-08-12/Alan Light

 

[Neunistiva]

So the main issue is that Suramin is out of patent and is cheap to produce.

Wouldn't that make it easier to get funding from NIH (or RFAs, or whatever it's called) or do a fundraiser?

 

[mango]

Can anyone recall what Ron said about PACE? I remember thinking, ooh that was good, then forgot 10 seconds later

"A failure of the system".

 

[Gingergrrl]

A bit OT here, but when I heard him talking about this I had to wonder if this is why I cannot handle nutrient products designed boost ATP production. Solving one problem, but creating another.

@leela Which products did you struggle with that boost ATP? I am now curious if we are similar.

 

[AndyPR]

Wouldn't that make it easier to get funding from NIH (or RFAs, or whatever it's called) or do a fundraiser?

But actual supply is an issue, as I described, so NIH may well be reluctant to fund a trial on a medicine that there is no additional supply of. Fundraisers obviously sidestep the issue of NIH involvement but are still affected by supply, as well as the level that would need to be raised. I really don't want to be too down on the possibility of Suramin being useful to us but we also need to be realistic in regard to the challenges involved.

 

[Bander]

I wanted to highlight something that Mark Davis said in case it is helpful. It resonated with me because last summer I was researching probiotics and I came across this study:

Groeger, David et al. “Bifidobacterium Infantis 35624 Modulates Host Inflammatory Processes beyond the Gut.” Gut Microbes 4.4 (2013): 325–339.​

It was a double-blind study, which is pretty rare among cfs results. It showed that taking a specific probiotic for 6 to 8 weeks decreased biomarkers of inflamation for cfs and other conditions. There are good reasons to be somewhat skeptical. I believe the study was paid for by the manufacturer and the commercial version is expensive and the patients in the study were given a dosage ten times the normal dosage. But I thought it was an interesting result.

The commercial product is called Align and I've been taking it for a year. My doctor thought it was worth trying, although he wasn't convinced that high doses were necessary long term. He mentioned that he takes Align himself.

In Mark Davis' talk, one of his bullet points was that, "Elevated cytokine levels that correlate with disease severity indicate a strong inflammatory component to CFS/ME." In the Q&A he mentioned that there are "probiotics that trigger helpful immune response that are available over the counter." When asked for clarification, he said, "bifido bacteria...you can buy it at Walmart."

I believe he was talking about Align or similar products. The fact that he mentioned Walmart makes me wonder whether he was thinking of a competing product called Equate that is cheaper. That uses a different strain of bifido bacteria than the one used in the study I mentioned, but it's not clear how important that is.

I haven't seen any big changes that I could detect, although I feel worse when I stop taking it. I'm using Align itself at a fairly high dose because my doctor agrees with the comment Davis made that, "it couldn't hurt," and I can afford it (Costco sales help). I think that major tinkering with your gut microbiome could cause harm, but I think that what Davis meant is that experimenting with this particular probiotic is probably safe if you can afford it.