Any updates

[Hopeful1976]

Speaking broadly, there is nothing that may lead to a near-term treatment other than the ongoing Rituximab phase III trial.
If this is found to be useful, and safe in CFS, then it may be available relatively quickly.
https://clinicaltrials.gov/ct2/show/NCT02965768 Nalotrexone is another possible treatment, though I understand the results to be less clear than rituximab.

As to 'mechanism', there are a lot of 'this is weird' papers - but there is no mechanism for why CFS happens. In order for drugs to be developed specifically for CFS, a mechanism and then a point to attack the disease with a drug needs to be found.

It seems unlikely this would happen before 5 years, with a designed treatment at least 15-20 years away.
http://www.fdareview.org/03_drug_development.php is informative.
There are several stages before this that need to be done first, which have not been done for CFS.

Work out mechanism for disease.
Work out drug target to interrupt or reverse mechanism of disease.
Develop compound(s) as candidates for doing that.

Only then do we get to the left of that diagram 'toxicology', and then it's about 20 years, and 12 tested compounds and many hundreds of millions of dollars typically to to get one working drug out.
(on average, it may turn out that the approach used does not work at all).

I feel quite hopeless reading this. 20 years is a very long time to wait. Too long. Gutted.

 

[Sushi]

I feel quite hopeless reading this. 20 years is a very long time to wait. Too long. Gutted.

I think you are only looking at one angle--the development of a totally new drug. Yes, this takes a long time, but the answer may be more simple as recent research is coming closer to the roots of the problem. Once that is understood pathways to treatment may open up in unexpected ways.

 

[perrier]

I feel quite hopeless reading this. 20 years is a very long time to wait. Too long. Gutted.

I feel devastated by this news too. There just isn't urgency. Not like in AIDS or cancer.

 

[Nickster]

Technology today is expanded exponentially and the reality is that speed of testing and treatments is greater than any other time/era before. The possibility of a quicker avenue is a real possibility.
Keep talking, engaging and rallying for change because it is when we shovel deeper and continue to persevere is when change happens. Continue to share information and this forum alone allows the exchange of information like never before.
I do believe strongly in Dr Ron Davis, Dr Naviaux, Jarred Younger, Lisa Klimas and others to make great strides. I hope for my bedridden son and all of the sufferers that we find answers.
Keep searching!

 

[Sushi]

I feel devastated by this news too.

But this isn't "news"--it's rumination!

 

[Kati]

I feel quite hopeless reading this. 20 years is a very long time to wait. Too long. Gutted.

Then there is clinical trials that people can participate in. Drug trials are usually sponsored especially when you are not sure whether you receive the real medicine or the placebo. Drug trials will precede drug approval, it is a great opportunity to get care if you are willing to take a calculated risk.

I am not sure where you are located @Vicki Cole but there is a precision medicine project starting in the US which will provide all kimds of testing. If I remember well it is called 'All of us'. Check it out.

Taking part in research will help prevent the next generation from going through what we are going through.

 

[Solstice]

I feel devastated by this news too. There just isn't urgency. Not like in AIDS or cancer.

As said there are a number of drugs being tested already. You have Davis that's doing a load of testing, you have the rituximab and cycloposthingy testing. As far as I know filgotinib is being tested too atm. There's enough of exciting stuff in the pipeline. And with every succesfull trial you get to know a little bit more about the disease too, which opens up new pathways to treatment aswell. Take the rituximab trial with on the back of it the cyclophosphamide(is that correct?) trial.

 

[Forbin]

There was the reported finding that cells from healthy people put in serum from people with ME became unhealthy (developed problems with energy production?).

I believe both Ron Davis and Fluge and Mella have found this (?).

To me, that is a very significant finding. I'm surprised we haven't heard more. I would have thought other researchers would have rushed to replicate this finding.

I believe this finding utilized the "nano-needle" technology developed at Stanford. Unless I'm wrong, this is the extremely tiny tube structure that allows them to measure changes in cellular impedance. My guess is that this technology is so new that it is currently only available at Stanford.

 

[Hutan]

My guess is that this technology is so new that it is currently only available at Stanford.

On Fluge and Mella's findings:

http://www.meaction.net/2016/12/23/...ort-for-disordered-metabolism-in-me-patients/

The serum of ME/CFS patients, when cultured with ordinary skeletal muscle cells, increased the rate of mitochondrial metabolism and respiration, especially when the scientists created chemical conditions that mimicked ‘energetic strain’.

 

[Forbin]

On Fluge and Mella's findings:
http://www.meaction.net/2016/12/23/...ort-for-disordered-metabolism-in-me-patients/

Yes, I'd forgotten about this. Looks likes different researchers have come to the same conclusion using different tests. I remember Ron Davis saying something to the effect of "we think it is in the blood, too" at the NSU conference when asked about Fluge and Mella's findings.

 

[Hopeful1976]

I think you are only looking at one angle--the development of a totally new drug. Yes, this takes a long time, but the answer may be more simple as recent research is coming closer to the roots of the problem. Once that is understood pathways to treatment may open up in unexpected ways.

Thanks for your positive reply to my sudden shock at reading the post. Though I know it's a long road, I have this constant hope that soon our nightmares shall soon be over... like us all, I desperately long for my body back. So desperately. Each day I look for new news.

 

[Hopeful1976]

Then there is clinical trials that people can participate in. Drug trials are usually sponsored especially when you are not sure whether you receive the real medicine or the placebo. Drug trials will precede drug approval, it is a great opportunity to get care if you are willing to take a calculated risk.

I am not sure where you are located @Vicki Cole but there is a precision medicine project starting in the US which will provide all kimds of testing. If I remember well it is called 'All of us'. Check it out.

Taking part in research will help prevent the next generation from going through what we are going through.

I'm in the UK. I feel we are so far behind you guys in the states. I look at phoenix every day, hoping to see that day when all of this is worked out and none of us have to suffer anymore.

 

[Hopeful1976]

That is terrible to read and the worst part is it's possible they still won't have a cure. Seriously F this. I'm at a loss for words. I guess I better learn to accept this reality.

I felt exactly the same when I read this post.

 

[greeneagledown]

Yes, Dr Naviaux is going to test suramin on 10 female ME/CFS patients later this year. He is arranging import of the drug into the US and raising funding

Do you (or does anyone else) know if the Suramin trial is going to be placebo-controlled, or just open-label?

I'd love to see a 30-person RCT as a start. My understanding is the drug is cheap as hell.

 

[Kati]

Do you (or does anyone else) know if the Suramin trial is going to be placebo-controlled, or just open-label?

I'd love to see a 30-person RCT as a start. My understanding is the drug is cheap as hell.

Usually the way it's done is by starting with a pilot study. Just a few patients to establish safety, dosage and efficacy. It gives te researcher the opportunity to learn about the drug, the side effects and the response. If the pilot is successful, then they hold a bigger trial. A small pilot study is necessary in order to have ethics approval for a larger trial.

The one issue that needs to be resolved is the availability of the drug. But that is one step, there are many other issues to be ironed out. It's not all that simple, unfortunately.

 

[greeneagledown]

Usually the way it's done is by starting with a pilot study. Just a few patients to establish safety, dosage and efficacy. It gives te researcher the opportunity to learn about the drug, the side effects and the response. If the pilot is successful, then they hold a bigger trial. A small pilot study is necessary in order to have ethics approval for a larger trial.

The one issue that needs to be resolved is the availability of the drug. But that is one step, there are many other issues to be ironed out. It's not all that simple, unfortunately.

I just don't understand the point of not including controls, even in these small exploratory trials. Since they don't receive the drug, they're cheap to include and don't raise safety concerns.

 

[Kati]

I just don't understand the point of not including controls, even in these small exploratory trials. Since they don't receive the drug, they're cheap to include and don't raise safety concerns.

By control you mean sick patients receiving placebo? Oh yes, this is a very important part of clinical trials. Usually in phase 2, after pilot studies.

Here is a link which may be explaining better the clinical trial phases:

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