Is there any positive upcoming news???

[bertiedog]

I totally sympathize. After nearly 35 years of battling this, I often find myself losing faith that there will be an answer. What keeps me going these days is largely the work of Jarred Younger. The talk that Jarred gave last week should lift your spirits considerably. Jarred is extremely smart, he understands our plight and the urgency of finding TREATMENTS that will help us, he is fighting tooth and nail to do so, and he has a LOT of findings that he says will be released this year.

You can find his talk at https://www.facebook.com/EmergeAustraliaInc/

Scroll down until you see
Emerge Australia Inc was live.
March 14 at 7:02 PM ·

Click play and go to the 1:27:40 timepoint.

I am sure I have read that one of his recent studies showed that there was increased lactate in the brain. This is interesting to me because the migraine experts are also saying that they think many of the various symptoms of migraine are due to increased lactate in the brain.

At times chronic migraine for me can be more disabling than the ME/CFS that I have.

Pam

 

[JES]

All this virus testing talk...What do people have against bacteria? Also, I think lots of good stuff is happening, such as DCA and so on, it's just a question of refining the approach. And the poster that said that microbiome research is a dead end couldn't have been more wrong, the fact that there is a consensus about this amongst top researchers now should tell you something.

Viruses are, broadly speaking, part of the microbiome. Wikipedia defines microbiome as:

A microbiota is an "ecological community of commensal, symbiotic and pathogenic microorganisms"[1][2] found in and on all multicellular organisms studied to date from plants to animals. A microbiota includes bacteria, archaea, protists, fungi and viruses.

Viruses are also known to modulate gut health and the microbiome in various way, a fascinating example is described in this article. It is incredibly complicated to understand all the interactions going on in the microbiome, so I think we can't rule any aspect out.

 

[MonkeyMan]

Usually the way research works with complex diseases, I wouldn’t expect there to be serendipitous discoveries without a large evidence base built up first. Even when we knew the causative agent of HIV we needed a lot more time and work to get to a cure. So I wouldn’t expect any serendipitous discoveries soon, unless we get 20x the current funding and build up the evidence base

With all due respect, this seems to me to be unnecessarily gloomy. Why should we expect that nothing will be discovered serendipitously? Even one of the agents currently being looked at (suramin, CT38, SS31/elamipretide, copaxone, Nancy Klimas' etanercept/mifepristone combo, or one of the several natural agents Jarred Younger is testing) may prove to be helpful, whether somewhat or dramatically. Throwing more money at a problem isn't always the only way to find an answer. you know. Intuition, cleverness, and persistence can pay off too.

 

[Rufous McKinney]

Intuition, cleverness, and persistence can pay off too.

I'm voting for: drug they already have, with minimal side effects, suddenly notice off label use and helps us get WAY better. I'm gonna work on dreaming that, now.

 

[frozenborderline]

With all due respect, this seems to me to be unnecessarily gloomy. Why should we expect that nothing will be discovered serendipitously? Even one of the agents currently being looked at (suramin, CT38, SS31/elamipretide, copaxone, Nancy Klimas' etanercept/mifepristone combo, or one of the several natural agents Jarred Younger is testing) may prove to be helpful, whether somewhat or dramatically. Throwing more money at a problem isn't always the only way to find an answer. you know. Intuition, cleverness, and persistence can pay off too.

I am betting on suramin not paying off, and the mechanism of action behind it is pretty speculative, funding is also obvious problem with the suramin trial. If naviaux , who is brilliant, had more money for his autism research, he may have had larger autism trials, more press, etc, snowballing in a way that would support his cfs research.

The klimas thing is not going to pan out i believe as me/cfs is not an hpa axis problem. same with cortene. Copaxone and elamipretide are actually more promising imo, but still sort of unlikely to pan out.

The point is the money is not adequate and we're not even at the point where we have enough data to make an animal model to test drugs, so all of these trials are semi-educated guesses. AIDS and cancer only became relatively treatable diseases because of huge investments in research, and we shouldnt expect our disease to be an exception. I'd be delighted to be proven wrong, but I'm betting on 40 years at the current rate.

I know that many of us are bedridden and severely ill and cant do much to change things, but in general I don't think acknowledging the pace of research being inadequate realistically is "gloomy". Because people can change the pace of research by demanding government funds research. All it would take is fifteen people going into the NIH and blocking the doors in some kind of coordinated protest, somehow get media to cover it with some kind of tip to the press or other theatrics, to get the ball rolling. Anyway, I don't see how it's "gloomy" to point out that if you are still at the data gathering stage and most studies so far have had problems with replicability due to overly broad criteria or issues with methods, and the evidence base is thus flawed, we're more than a few years off getting a cure. Data gathering > disease model > drug development > animal testing > 3 phase human testing.. the last parts are especially expensive. with advocacy the drug development pipeline could be sped up under exigent circumstances.

 

[frozenborderline]

I'm voting for: drug they already have, with minimal side effects, suddenly notice off label use and helps us get WAY better. I'm gonna work on dreaming that, now.

with the amount of experimentation clinicians and patients do, I would think that if a serendipitous discovery was going to happen, it would've by now

 

[perrier]

I am betting on suramin not paying off, and the mechanism of action behind it is pretty speculative, funding is also obvious problem with the suramin trial. If naviaux , who is brilliant, had more money for his autism research, he may have had larger autism trials, more press, etc, snowballing in a way that would support his cfs research.

The klimas thing is not going to pan out i believe as me/cfs is not an hpa axis problem. same with cortene. Copaxone and elamipretide are actually more promising imo, but still sort of unlikely to pan out.

The point is the money is not adequate and we're not even at the point where we have enough data to make an animal model to test drugs, so all of these trials are semi-educated guesses. AIDS and cancer only became relatively treatable diseases because of huge investments in research, and we shouldnt expect our disease to be an exception. I'd be delighted to be proven wrong, but I'm betting on 40 years at the current rate.

I know that many of us are bedridden and severely ill and cant do much to change things, but in general I don't think acknowledging the pace of research being inadequate realistically is "gloomy". Because people can change the pace of research by demanding government funds research. All it would take is fifteen people going into the NIH and blocking the doors in some kind of coordinated protest, somehow get media to cover it with some kind of tip to the press or other theatrics, to get the ball rolling. Anyway, I don't see how it's "gloomy" to point out that if you are still at the data gathering stage and most studies so far have had problems with replicability due to overly broad criteria or issues with methods, and the evidence base is thus flawed, we're more than a few years off getting a cure. Data gathering > disease model > drug development > animal testing > 3 phase human testing.. the last parts are especially expensive. with advocacy the drug development pipeline could be sped up under exigent circumstances.

you are more than correct Debored, this needs actually folks parking in front of the NIH and calling every journalist in town; unless the media keeps picking this up, it gets lost; the NIH just is not getting that this disease detonates young lives; it has not hit them; unrest was really superb and helped but things like unrest are needed weekly.

 

[Rufous McKinney]

I would think that if a serendipitous discovery was going to happen, it would've by now

On the one hand, I do not disagree. Yet I know that Western based medicine ignores and continues to largely ignore eastern-based medicines for instance. So like I have fixed my IBS really rather remarkably, but those herbs aren't in anybody's study and that seems to still be the case. And "fixed" may be is the wrong term- improved daily operation is a better term. If I don't take the herbs, default to a more lousy condition returns pretty quickly. So its not a cure. Its not "fixed permanently".

I see, frankly, many many many things described here the some have tried and for some its helped, and I've never tried most of those things. How does one go about: noting the effects of 1000 variables.

I take supplements and frankly notice nothing...pro, con. Then here at PR: major detail about the effects of all these things....I don't see any difference taking or not taking supplements. (but yes, I keep adding more to the list)

 

[wigglethemouse]

Thought I would share this blog by @Simon from Sept 2018 "A brightening future: the state of ME/CFS research"
https://mecfsresearchreview.me/2018/09/27/a-brightening-future-the-state-of-me-cfs-research/

And also this tweet by @JaimeS who is Director of Scientific and Medical Outreach for MEAction (as well as a patient)

https://twitter.com/i/web/status/1107703789945909260

 

[Rufous McKinney]

I would think that if a serendipitous discovery was going to happen, it would've by now

Given the opportunity for multiple routes of entry (some virus, or infection, or major body stressor) and the continued assertion that many many are undiagnosed, (or were told X when perhaps its Y); the entirely haphazard treatments we'e received if any; I think there is plenty of opportunity for the Serendipitous to: appear.

 

[perrier]

Thought I would share this blog by @Simon from Sept 2018 "A brightening future: the state of ME/CFS research"
https://mecfsresearchreview.me/2018/09/27/a-brightening-future-the-state-of-me-cfs-research/

And also this tweet by @JaimeS who is Director of Scientific and Medical Outreach for MEAction (as well as a patient)

https://twitter.com/i/web/status/1107703789945909260

Thank you for posting.
Simon's blog is a first rate summary, but it is now 7 months old. And 5 years of waiting for an answer will be very much pushing some folks to a breaking point. It's ok if you are very young and not very severe, but for the very ill, it's really rough.

 

[Hopeful1976]

I am betting on suramin not paying off, and the mechanism of action behind it is pretty speculative, funding is also obvious problem with the suramin trial. If naviaux , who is brilliant, had more money for his autism research, he may have had larger autism trials, more press, etc, snowballing in a way that would support his cfs research.

The klimas thing is not going to pan out i believe as me/cfs is not an hpa axis problem. same with cortene. Copaxone and elamipretide are actually more promising imo, but still sort of unlikely to pan out.

The point is the money is not adequate and we're not even at the point where we have enough data to make an animal model to test drugs, so all of these trials are semi-educated guesses. AIDS and cancer only became relatively treatable diseases because of huge investments in research, and we shouldnt expect our disease to be an exception. I'd be delighted to be proven wrong, but I'm betting on 40 years at the current rate.

I know that many of us are bedridden and severely ill and cant do much to change things, but in general I don't think acknowledging the pace of research being inadequate realistically is "gloomy". Because people can change the pace of research by demanding government funds research. All it would take is fifteen people going into the NIH and blocking the doors in some kind of coordinated protest, somehow get media to cover it with some kind of tip to the press or other theatrics, to get the ball rolling. Anyway, I don't see how it's "gloomy" to point out that if you are still at the data gathering stage and most studies so far have had problems with replicability due to overly broad criteria or issues with methods, and the evidence base is thus flawed, we're more than a few years off getting a cure. Data gathering > disease model > drug development > animal testing > 3 phase human testing.. the last parts are especially expensive. with advocacy the drug development pipeline could be sped up under exigent circumstances.

Reading your posts have made me feel even more down than I was. No hope according to you in our lifetimes. I pray for all of us that you are wrong.

 

[wigglethemouse]

And 5 years of waiting for an answer will be very much pushing some folks to a breaking point. It's ok if you are very young and not very severe, but for the very ill, it's really rough.

It is very rough. The severe version of our disease is awful. However, trying to stay on topic for the title of this thread I thought I would share this.

The Clinician’s Coalition: Another Ray of Light for ME/CFS
https://www.healthrising.org/blog/2...r-summit-building-the-foundation-for-success/

My hope is that they will be identifying tests they most often find positive in the patients, common comorbid conditions such as POTS and MCAS that have recognised tests and treatments, and tools to treat common symptoms. If they can then create documentation about this to share with other providers we will all start to benefit.

The most promising aspect are that they are doing this in their own time, at their own expense - there is no government bogging this down and trying to make it disappear. Motivated individual doctors working as a team CAN bring about change.

• Enhancing and growing a collaborative network of U.S. providers with strong expertise in ME/CFS.
• Summarizing key diagnostic and treatment methods and the supporting peer-reviewed science and best clinical practice to inform standards of care for ME/CFS.
• Building the ranks of informed physicians nationwide through medical provider educational materials and programs.
• Advancing the ME/CFS research agenda with data, clinical observations, and intuition-based findings from expert practice. This feedback will include recommendations for treatment trials, identification of possible illness subsets, and observations of illness presentation.

 

[ljimbo423]

The klimas thing is not going to pan out i believe as me/cfs is not an hpa axis problem. same with cortene. Copaxone and elamipretide are actually more promising imo, but still sort of unlikely to pan out.

I understand your pessimism.

I think the brain is heavily involved in ME/CFS. It might even be that by modulating the immune system with the right drug/drugs or herbs, thereby reducing brain inflammation. It could improve symptoms dramatically or lead to recovery.

Another possibility is, the brain inflammation Jarred Younger has found, might be causing symptoms like increased intestinal permeability (leaky gut) and others to be "locked" in place. (There is a very strong connection between the brain and the gut.)

There is a vast amount of research showing that brain dysfunction can cause gut dysfunction and gut dysfunction can cause brain dysfunction. It's called the gut/brain axis.

Reducing the brain inflammation enough could lead to a partial or even complete remission.

Jarred Younger said he found at least 3 herbs that were "very effective" in reducing brain inflammation in Gulf war syndrome and might work in ME/CFS. So that's another possibility.

 

[Rufous McKinney]

There is a very strong connection between the brain and the gut.)

even tho we all know this, in this body: the gut has been running the show for years and years now. Its quite phenomenal. Out of a dead sleep: emerges the gut's opinion that- it has no intention of going along with that plan.

 

[Rufous McKinney]

Jarred Younger said he found at least 3 herbs that were "very effective" in reducing brain inflammation in Gulf war syndrome and might work in ME/CFS. So that's another possibility.

Herbs actually help me. I'd be nowhere without them. Philosophically, I believe, due to my direct experience repeatedly, that on this earth resides everything we ever did or ever will need (until its time to be elsewhere). We just have to figure it out. This theme has followed me thruout my life. Something appears, like a gift, and then it turned out you really needed it. Or, something appeared and I should have pursued it, and years later, now realize that oops.

heading for a new herb strategy approach conference... right now.

 

[gregh286]

2 million people in the USA yet a handful appear on the worlds largest CFS forum..
Something not adding up...from a global perspective where are all these sick people....do they not use the internet?
Of course he found lactate in brain....we are generating it for fun from a mangled PDH pathway.
There is a heightened stress state in mitochondria.....shut down at earliest sign of trouble. They are sitting on knife edge ready to react...
.Food triggers...viral....alcohol....adrenaline surges......LPS....

Sad too because its.nearly 3 years now since I first read one of the most promising papers from Ron and so many CFS leads end up petering out......

https://www.meaction.net/2016/06/04/ron-davis-errors-metabolism/

Some day.....

 

[HowToEscape?]

On the one hand, I do not disagree. Yet I know that Western based medicine ignores and continues to largely ignore eastern-based medicines for instance. So like I have fixed my IBS really rather remarkably, but those herbs aren't in anybody's study and that seems to still be the case. And "fixed" may be is the wrong term- improved daily operation is a better term. If I don't take the herbs, default to a more lousy condition returns pretty quickly. So its not a cure. Its not "fixed permanently".

I see, frankly, many many many things described here the some have tried and for some its helped, and I've never tried most of those things. How does one go about: noting the effects of 1000 variables.

I take supplements and frankly notice nothing...pro, con. Then here at PR: major detail about the effects of all these things....I don't see any difference taking or not taking supplements. (but yes, I keep adding more to the list)

Medicine isn't Eastern, Western, Northern or Pelagic. It either works or it doesn't.

 

[frozenborderline]

Reading your posts have made me feel even more down than I was. No hope according to you in our lifetimes. I pray for all of us that you are wrong.

No hope in our lifetimes unless something changes. There may be people that will fight for the change more effectively. It seems like most ME/CFS orgs, even the really good ones, are focused on the "inside" strategy of lobbying, talking to people in congress--yes there are protests, once a year, but not very vigorous protests. Again, all that would have to change is some aggressive protests in congress or nih buildings... that happen to get picked up by the media

 

[Rufous McKinney]

where are all these sick people

My primary care doctor who seems to recognize we exist says he has one other patient like me.

So yes: where are they all? following other bread crumbs, working and faking it still?