Is there any positive upcoming news???

[Hopeful1976]

I'm so utterly fed up of no positive news. Does anyone know if there's anything exciting I'll upcoming?
From cortene down the pan, to ido2 down the pan, to t cell clonal ex down the pan..... will anyone ever make the breakthrough we so desperately need?

 

[ljimbo423]

Jarred Younger said at the Australian symposium a couple of days ago. That he will have several papers coming out this year. That he has compiled a lot of data and will be releasing some of that info in these papers.

He also talked about 9 "anti-brain inflammation" herbs he tested in gulf war illness. Which he thinks is also caused by neuro-inflammation, like ME/CFS. He found at least 3 of the herbs were "very effective", "maybe 4" in GWI.

He listed these herbs, stinging nettle, boswellia, curcumin, resveratrol but said their were 9 in total. Once he has the final list of herbs that work, he said he'll try them in ME/CFS.

 

[Belbyr]

NOVA just released a whole list of drugs to use as treatments by looking at genetics and immune markers in CFS

 

[perrier]

NOVA just released a whole list of drugs to use as treatments by looking at genetics and immune markers in CFS

Where would this list be found please? Thanks

 

[Belbyr]

https://forums.phoenixrising.me/thr...ression-treatment-avenues.75491/#post-2190627

 

[maybe some day]

I'm so utterly fed up of no positive news. Does anyone know if there's anything exciting I'll upcoming?
From cortene down the pan, to ido2 down the pan, to t cell clonal ex down the pan..... will anyone ever make the breakthrough we so desperately need?

I was thinking the same thing today. By now I would have hoped very promising news. All I hear are crickets

 

[MonkeyMan]

I was thinking the same thing today. By now I would have hoped very promising news. All I hear are crickets

I was too. This is why I find the hype that invariably comes from research-conference promoters and fundraisers (e.g., "We've assembled a stellar team of researchers", "We are making great strides in understanding ME/CFS", "We are getting closer to cracking this", etc.) to be empty talk, and in fact a bit off-putting. We hear this every year and yet very few therapies seem to be actively being tested.

That being said, I'm excited by the work of Jarred Younger, the possibility that Cortene will be effective (not sure why the first poster said it is "down the pan"?), and the system reset that Nancy Klimas is testing.

 

[valentinelynx]

Researchers are making great strides, given the shortage of funds. Research is a slow, painstaking process, and it requires tremendous resources. Until serious funding is available for studying this illness, progress will be painfully slow.

 

[Hopeful1976]

NOVA just released a whole list of drugs to use as treatments by looking at genetics and immune markers in CFS

Do we know these drugs?

 

[Hopeful1976]

I was too. This is why I find the hype that invariably comes from research-conference promoters and fundraisers (e.g., "We've assembled a stellar team of researchers", "We are making great strides in understanding ME/CFS", "We are getting closer to cracking this", etc.) to be empty talk, and in fact a bit off-putting. We hear this every year and yet very few therapies seem to be actively being tested.

That being said, I'm excited by the work of Jarred Younger, the possibility that Cortene will be effective (not sure why the first poster said it is "down the pan"?), and the system reset that Nancy Klimas is testing.

I read on here from another thread that news was it hadn't been successful 😞

 

[Hopeful1976]

Researchers are making great strides, given the shortage of funds. Research is a slow, painstaking process, and it requires tremendous resources. Until serious funding is available for studying this illness, progress will be painfully slow.

Its the usual argument- 'No answers until more money is given'... What about pineapple last year? He gave millions and still nothing??

 

[gbells]

I wouldn't expect any progress unless researchers figure out the cause of SEIDs. We're looking at massive progressive breakdown of the mitochondria. Generally when you throw symptom treatments at a progressive disease it just allows the body to get worse because then you're not listening to pain and fatigue cues. We already had many symptom treatments that went nowhere, ie. D-Ribose or many anti-oxidant vitamin regimens.

The best thing we can do is to lobby hard to increase the NIH research budget. This disease is a growing epidemic. It is a travesty that it is only funded at 10% of the level it needs to make progress.

 

[maybe some day]

I was too. This is why I find the hype that invariably comes from research-conference promoters and fundraisers (e.g., "We've assembled a stellar team of researchers", "We are making great strides in understanding ME/CFS", "We are getting closer to cracking this", etc.) to be empty talk, and in fact a bit off-putting. We hear this every year and yet very few therapies seem to be actively being tested.

I completely agree. I had high hopes last year and prior. But not much anymore. Alot of advocating going on, which tells me not many new answers on the research side of things. I hope Im wrong, but seems we are at another dead end

 

[gbells]

I completely agree. I had high hopes last year and prior. But not much anymore. Alot of advocating going on, which tells me not many new answers on the research side of things. I hope Im wrong, but seems we are at another dead end

Yes, that's how I felt when I read the research projects being sponsored by one major group: microflora, genetics, etc. Grasping at straws. Why not continue Lehrner's direction with viruses like HHV-6, CMV and EBV? It is so common that SEIDs patients start out getting a viral infection that I think the causes are dual or triple co-infections between: a new gram negative bacteria and Herpes viruses such that the immune system is blocked before it can generate long term antibodies to fight off the invaders.

 

[maybe some day]

Yes, that's how I felt when I read the research projects being sponsored by one major group: microflora, genetics, etc. Grasping at straws. Why not continue Lehrner's direction with viruses like HHV-6, CMV and EBV?

Well, from what I hear from Ron, no virus was found, and doesnt recommend antivirals. But I dont know a whole lot about those details to be honest. I just know Im tired of feeling like shit

 

[ljimbo423]

Well, from what I hear from Ron, no virus was found, and doesnt recommend antivirals. But I dont know a whole lot about those details to be honest. I just know Im tired of feeling like shit

I agree, I am also sick of being sick! You are right that Ron Davis found no increase in viruses in ME/CFS in the this study-

Update Spring 2018:

Severely Ill Big Data Study – This study, led by Ronald W. Davis, PhD, and Wenzhong Xiao, PhD, included over 1,000 tests per patient, producing, to our knowledge, the biggest dataset ever generated in a cohort of ME/CFS patients.

This big data study examined the patients’ genome, gene expression, metabolomics, microbiome, cell-free DNA sequencing and quantitation, and cytokines, as well as a range of tests typically performed by clinicians.

In 2017, the focus of the study was on analysis, data integration, and making the dataset available to researchers at The Stanford End ME/CFS Data Center (registration required). Click here to read more about the objectives and types of data gathered in this study.

Differences in metabolites, microbiomes, cytokines, and several clinical test results were observed between patients and controls.


No significant differences were found for any major DNA viruses between patients and controls using cell-free DNA from the blood. By using cell-free DNA it was possible to look for even the viruses that can hide behind the blood-brain barrier escaping detection by normal means.

In addition, the blood of patients was examined for new pathogens by isolating particles from the blood and using DNA sequencing. No new pathogens were found.

https://www.omf.ngo/mecfs-severely-ill-big-data-study/

 

[Hip]

Does anyone know if there's anything exciting I'll upcoming?

Yes, there is one (possibly two) potent new anti-enterovirus antiviral drugs which target CVB coming out in around 2 years. They are being tested by a major Swiss pharmaceutical company. These drugs may well dramatically improve or even cure around 40% of ME/CFS patients, since over half of ME/CFS cases are probably due to enterovirus, and most of those due to CVB, according to Dr Chia's research.

Not only that, but if these new drugs work as well as anticipated, then it will provide strong evidence that ME/CFS is caused by ongoing viral infection, so it should spur on more antiviral research.

These drugs have already been developed, and work very well in animal studies. The only thing that's left is to put them through human clinical trials to ensure safety, before they can be brought to market. The good news is that the FDA says it will fast track the licensing of any new drug which can treat ME/CFS: I believe this means that the normal 5 years or so it takes to bring a new drug out is reduced to only around 2 years.

I've been planing to post a new thread on these new enterovirus antivirals, and will do shortly.

 

[Hopeful1976]

I just feel so horribly hopeless so about it all. It's not a good feeling

 

[JES]

EBV, HHV-6 and CMV viruses are DNA viruses and they were tested for by Ron Davis' team and as @ljimbo423 pointed out, the severe patients were found to have lower level of viruses than healthy controls. It could of course be possible that there is a subgroup of patients that have active DNA viruses, but so far not much seems to hint towards it.

However, the negative results can only be interpreted as far as DNA viruses. RNA viruses like enteroviruses have not (yet) been tested and one reason for the delay seems to be that they are harder to reliably test for. Apparently Davis will test for parasites before moving on to RNA viruses, so it might take quite a while before he could confirm or disprove enteroviruses in his patients.

 

[Hip]

EBV, HHV-6 and CMV viruses are DNA viruses and they were tested for by Ron Davis' team and as @ljimbo423 pointed out, the severe patients were found to have lower level of viruses than healthy controls.

That's true: Ron Davis used a brand new method for detecting DNA virus infections, and using this method found no evidence of active DNA virus infection.

However, you don't need to have an active infection to cause trouble; viruses like EBV, which normally live in a dormant and latent state in B-cells in most of the population, are able to partially awaken in these cells (EBV has 3 latency states: the first state is 100% dormant, but the other 2 are partially awakened). And partially awakened states may also cause trouble. And indeed one study found that ME/CFS may be linked to partially awakened EBV.

As far as I am aware, Ron Davis's method would not detect partially awakened DNA viruses (though I am not sure of this).


Also, Lerner's theory is that ME/CFS is caused by abortive herpesvirus infections. Abortive infections create ongoing viral infection in cells, but do not produce any new viral particles. HIV infection of CD4 cells is an example of an abortive infection.

I am not sure if Ron Davis's method would detect abortive herpesvirus infections either.