Is there any positive upcoming news???

[Rufous McKinney]

It's not a good feeling

Seems to leave us with : ayahauasca microdosing. (attempt at humor)

 

[raghav]

I am eagerly looking forward to the launch of Bendavia or elamipretide also called SS-31. This is being tested in LHON and other mitochondrial myopathies. Most of the Bendavia trials are in phase II . But they will get fast tracked since mito myopathies are in the rare category. So FDA will fast track it. I expect it to reach the market in another 2 years. Hopefully it should help at least in giving us relief from the debilitating fatigue that we are experiencing. Keeping fingers crossed.

 

[perrier]

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

I feel like this too; I just can't withstand watching the suffering; and the waiting for 2 years for this or that is looking like it will be too hard for some. 2 years is a very long time to continue being in agony around the clock.

 

[Hopeful1976]

To me, in the uk, with the awful press of late, it feels like everything has gone full circle - I've started getting panic at night again because of it. I just wish someone would talk to us each week/ month. Give us something to hope for. I've not felt so hopeless in a very long time. It's the most crippling of emotions.

 

[gbells]

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.

Thank you Hip. Perhaps this would be a good thing because it would slow the spread of the virus. Perhaps what happens when you have two viruses infecting concurrently is that they inhibit each other due to competition for viral subparts, leaving you with a cell full of cytokine stimulating intermediate viral products. The immune system would be constantly activated, generating the fatigue and the infected cells sensitized, yielding the photosensitivity, noise sensitivity and chronic pain. In 2007 I contracted EBV mononucleosis and registered positive on an antibody test for acute infection. Then I contracted HHV-6 and a funny thing happened, my EBV never seroconverted to chronic form but instead went negative. I believe this is what Lehrner was talking about when he mentioned abortive infections.

 

[S-VV]

@Hip is there any clue for the prize of the anti-enteroviral drugs pipelined?

 

[maybe some day]

I feel like this too; I just can't withstand watching the suffering; and the waiting for 2 years for this or that is looking like it will be too hard for some. 2 years is a very long time to continue being in agony around the clock.

I could do 2 years if I knew that would be all. But at this point, its like throwing darts in the dark for a valid time table. I just dont know what to believe anymore. I dont string out ropes of hope anymore. Too many disappointments.

 

[Hip]

@Hip is there any clue for the prize of the anti-enteroviral drugs pipelined?

The two new potent antiviral drugs for enterovirus are code named Rega Compound A and Rega Compound 17. See here.

 

[Hip]

I believe this is what Lehrner was talking about when he mentioned abortive infections.

An abortive infection occurs when a virus enters a cell which does not posses all the equipment the virus needs to fully replicate. When that happens, the virus is constantly trying to replicate in the cell, but never succeeds. SO the infection can go on forever inside the cell.

 

[Pyrrhus]

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.

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

Do we know if Ron Davis did his testing using whole blood, or just cell-free plasma?
There is a HUGE difference in the viruses you would find in the two methods.

My guess is Ron took the easy way out and just tested the cell-free blood plasma, as whole-blood testing would have been ‘too difficult’.

Perhaps what happens when you have two viruses infecting concurrently is that they inhibit each other due to competition for viral subparts,

That’s possible, but herpesviruses actually tend to do the opposite. Herpesviruses are notorious for reactivating when they ‘sense’ another virus around. Once reactivated, the herpesviral proteins are often seen to enhance the other viral infection.

 

[Hip]

Do we know if Ron Davis did his testing using whole blood, or just cell-free plasma?
There is a HUGE difference in the viruses you would find in the two methods.

I have seen very little info about the method used, it's some new tech that can supposedly detect infections anywhere in the body, based on finding the DNA of pathogen in the blood. Ron Davis talks about it at timecode 25:50 in this presentation.

From his description of the method, it does not seem likely it would detect partially reactivated latent infections, nor abortive infections, though that's just my guess, I don't know for sure.


Dr Chia is saying we need to test tissue samples to detect the infections in ME/CFS, as the infections are hiding in the tissues, likely as intracellular infections.

There are lots of studies that have found enterovirus in ME/CFS tissue biopsies, but there are almost no studies that have looked for herpesviruses in the tissues. So we have direct evidence for the presence of enterovirus infection in ME/CFS, but we do not have this evidence for herpesvirus. The evidence for herpesvirus comes more from chronically raised IgG levels in ME/CFS, which suggest a herpesvirus infection is going on somewhere in the body.

But we have not pinpointed the locations of the herpesvirus infection, as we have with enterovirus. With enterovirus we know these infections are found in the muscles, gut and brains of ME/CFS patients.

 

[MonkeyMan]

I could do 2 years if I knew that would be all. But at this point, its like throwing darts in the dark for a valid time table. I just dont know what to believe anymore. I dont string out ropes of hope anymore. Too many disappointments.

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.

 

[perrier]

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 tried to find Jarred, but could not; is there any way you might be able to summarise in a few sentences what he said that you feel is optimistic. Thanks

 

[MonkeyMan]

I tried to find Jarred, but could not; is there any way you might be able to summarise in a few sentences what he said that you feel is optimistic. Thanks

I couldn't begin to do him justice. It would be unfair to both Jarred and you if I cherry-pick stuff. Where are you running into difficulties? Did you get on the Facebook page? Did you scroll down and find the video? Did you fast forward to the 1:27:40 timepoint?

 

[Pyrrhus]

I have seen very little info about the method used, it's some new tech that can supposedly detect infections anywhere in the body, based on finding the DNA of pathogen in the blood. Ron Davis talks about it at timecode 25:50 in this presentation.

Thanks, Hip. That presentation was very helpful.

I watched the presentation and there are a number of potential problems with how Ron tested for viruses:

1) Before they looked for viruses in the blood, they first removed all the cells from the blood, and just looked in the leftover liquid. Since viruses spend most of their lifecycle inside of cells, this technique could miss many viruses. (To be fair, removing the cells from the blood is a standard practice in blood assays, but that doesn’t make it right.)

2) They only tested for a few known DNA viruses. Not all DNA viruses were tested for. No RNA viruses were tested for. The next slide in the presentation says “No DNA virus DNA was detected in most patients.” Although technically correct, this remark can become misleading when patients take it out of context. There is a newer assay that can detect any DNA virus, known or unknown, but all Ron says about this newer assay is that they “tried it once but didn’t really see anything.” I don’t know what to make of that brief comment. Maybe there is more info in one of his earlier presentations.

3) Ron claims that the blood is the “sewer” of the body and that any virus would necessarily leave behind its garbage in the blood. This is NOT a generally accepted assumption in the field of virology. In fact, it is the lymphatic system that is generally held to be the “sewer” that collects any garbage left behind by pathogens such as viruses. If you really wanted to look in the virus’s ‘garbage bin’, you must look in the lymph nodes, not in the blood. The only substantiation that Ron provides for this bizarre claim is that “a startup is already looking into it.” Having worked in Silicon Valley long enough, I don’t find this very convincing. Now, I’m sure Ron has other reasons to believe this, but I don’t know that he has communicated them to the patient community.

It would really be nice if more of this work could be published so that we can know exactly how to interpret his comments. It’s unfortunate when his comments are taken out of context by patients. But I certainly understand why Ron prefers to spend his time researching, rather than publishing.

 

[Belbyr]

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 liked his statement towards the end that ME/CFS is a virus, bacteria, autoimmune, or immune dis-regulation. The future study to see if B and T cells are entering the brain will be very interesting.

 

[raghav]

The Bendavia or elamipretide trials I mentioned are in Phase 3
Elamipretide phase 3 trial
MMPOWER-3: A phase 3, randomized trial to evaluate the efficacy and safety of elamipretide in patients with PMM followed by an open-label treatment extension with elamipretide.
https://clinicaltrials.gov/ct2/show/NCT03323749
Stealth BioTherapeutics

 

[gbells]

An abortive infection occurs when a virus enters a cell which does not posses all the equipment the virus needs to fully replicate. When that happens, the virus is constantly trying to replicate in the cell, but never succeeds. SO the infection can go on forever inside the cell.

This abortive infection idea doesn't make a lot of sense. How is the virus replicating then to allow it to spread? Why so many people? Why is the disease progressive in adults if it isn't able to replicate? I don't think it is a good hypothesis.

 

[Hip]

This abortive infection idea doesn't make a lot of sense. How is the virus replicating then to allow it to spread? Why so many people? Why is the disease progressive in adults if it isn't able to replicate? I don't think it is a good hypothesis.

You might like to read the thread I wrote on Dr Lerner's abortive infection theory, as this explains many of the details. Unfortunately no one has taken Dr Lerner's work forward: no one has actually tested the tissues of ME/CFS patients (eg muscle or brain tissue) for the presence of abortive herpesvirus infections. So it is only a theory, and does not have much empirical evidence to support it.

However, abortive infection does exist. As mentioned, in AIDS the HIV virus causes an abortive infection of the CD4 cells in the blood. In AIDS you eventually die because your CD4 cells die off, and you become subject to opportunistic infections. So abortive infections can kill.

In the body, you can have abortive infections in certain cell types (which by definition do not produce new viral particles) alongside normal productive infections in other cell types (which create new viral particles). Depending on the cell type, the virus may either create a productive or an abortive infection. It all depends on the cell.

So just because there is an abortive infection going on, it does not necessarily mean no viral new particles are made elsewhere in the body.



What I like about the abortive infection theory is that it offers an explanation of why herpesvirus antivirals take such an extraordinarily long time to work in ME/CFS. Antivirals normally work in a matter of weeks, but in the case of EBV, HHV-6 or CMV associated ME/CFS, Lerner found that it takes 1 or 2 years for the antiviral to take full effect.

Lerner points out that standard herpesvirus antivirals have no direct effect against abortive infections, so this is why he thought it takes such a long time. If a new antiviral could be developed which directly targeted abortive infections, it's possible that ME/CFS might be cured in a matter of weeks (assuming ME/CFS is indeed caused by abortive infection).

 

[Hip]

Now, I’m sure Ron has other reasons to believe this, but I don’t know that he has communicated them to the patient community.

My impression is that Ron Davis does not give that much credence to the viral infection theory of ME/CFS, and so perhaps is paying lip service to viral testing.

Though I am not too concerned when researchers don't believe in the viral theory; they may discover something interesting about ME/CFS by approaching it from a non-viral angle.