Is there any positive upcoming news???

MonkeyMan

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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
@raghav thanks this is interesting ... is there talk in the medical community that this might help us, and if so can you point me to it?
 

gbells

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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).
I looked up the mechanics of AIDs. While the infection is abortive in T-cells, other types of cells aren't abortive and produce virus. So you can't call it a fully abortive infection. There is no evidence that SIEDs patients are suffering cell loss due to an abortive infection.
 
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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.
Thanks you for that link, I ended up watching most of it. It does spin a more enlightening future. What he says makes sense
 

Hip

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I looked up the mechanics of AIDs. While the infection is abortive in T-cells, other types of cells aren't abortive and produce virus. So you can't call it a fully abortive infection.
Dr Lerner is not suggesting ME/CFS is a purely abortive infection. In fact he specifically states he think there is also a productive infection going on alongside the abortive infection.

He thinks the viral particles from the productive infection constantly re-seed the abortive infection, so that the abortive infection cannot be cleared.

When you take herpesvirus antivirals, they target the productive infection, and so greatly reduce the number of viral particles produced. This stops the abortive infection from being re-seeded, so then eventually the immune system very slowly clears the abortive infection (or at least reduces the abortive infection). That's Dr Lerner's theory.



Obviously AIDS cannot be a purely abortive infection, as we know AIDS patients have HIV viral particles in their blood which can infect others if there is blood contact.
 
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Rufous McKinney

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I just wish someone would talk to us each week/ month.
We totally need this service. I cannot cognatively process these really complex things currently. I know we have so much help here with folks who can pull that together. Wish some brilliant Graduate Student interested in Public Health or something would take this on for a Heroic Award.
 

raghav

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@MonkeyMan Ron Davis in his speech said SS-31 (Elamipretide aka bendavia ) works in the nano needle.

Mechanism of Action of Elamipretide
Elamipretide is an aromatic-cationic tetrapeptide that readily penetrates cell membranes and transiently localizes to the inner mitochondrial membrane where it associates with cardiolipin. Through this mechanism of action, elamipretide is thought to restore energy production, to reduce the production of reactive oxygen species, and ultimately to increase the energy (adenosine triphosphate [ATP]) supplied to affected cells and organs.12,13 In preclinical studies, elamipretide increased the synthesis of ATP and reduced reactive oxygen species production regardless of the specific mitochondrial abnormality causing the impaired mitochondrial respiration.14,18 There is no observed effect on normally functioning mitochondria.19

The latest studies of ME CFS mitochondria are pointing in the direction of oxidative stress in the mitochondria which is impairing the mitochondria from producing ATP. If you see the mechanism of action of elamipretide it increases the synthesis of ATP and reduces ROS production. So I feel this will help us a lot at least in clearing the mental and physical fatigue considerably. It may not be the silver bullet but if you get your energy levels up by at least 50- 60 % we can go back to our normal routine lives.
 

perrier

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@MonkeyMan Ron Davis in his speech said SS-31 (Elamipretide aka bendavia ) works in the nano needle.

Mechanism of Action of Elamipretide
Elamipretide is an aromatic-cationic tetrapeptide that readily penetrates cell membranes and transiently localizes to the inner mitochondrial membrane where it associates with cardiolipin. Through this mechanism of action, elamipretide is thought to restore energy production, to reduce the production of reactive oxygen species, and ultimately to increase the energy (adenosine triphosphate [ATP]) supplied to affected cells and organs.12,13 In preclinical studies, elamipretide increased the synthesis of ATP and reduced reactive oxygen species production regardless of the specific mitochondrial abnormality causing the impaired mitochondrial respiration.14,18 There is no observed effect on normally functioning mitochondria.19

The latest studies of ME CFS mitochondria are pointing in the direction of oxidative stress in the mitochondria which is impairing the mitochondria from producing ATP. If you see the mechanism of action of elamipretide it increases the synthesis of ATP and reduces ROS production. So I feel this will help us a lot at least in clearing the mental and physical fatigue considerably. It may not be the silver bullet but if you get your energy levels up by at least 50- 60 % we can go back to our normal routine lives.
Dear Raghav,
Very interesting, and thank you. The one worry I have is the possibility of 'crashing." If the system gets stimulated artificially as it were, there can still be horrific crashes. These are familiar to folks who have pushed through their PEM, in order to get a bit of life.
 

Rufous McKinney

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If the system gets stimulated artificially as it were, there can still be horrific crashes.
I'm hopeful something comes thru. Yet: after reading about Elamipretide, seems like I"m left feeling these are the drugs that get invented but there is no access to them. A private company and investors appear to intend to make large profits on this drug. Its also possible I don't understand how this all works. Orphan drug approval for rare diseases. If it turns out to help us, perhaps thats more users and NOT rare. Maybe it could be affordable.

I seem to collide with: "You cannot have that". OR: we don't cover that. My insurance won't cover the Prescription I recieved yesterday. Terrified of side effects, I'm frankly afraid to take it, and my doctor appointment has concluded. And I had a whole 45 minutes!!
 

debored13

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I don't have much hope of anything coming soon, im too sick to fight for it. If theres one regret i really have in my life, its not getting engaged in some kind of aggressive, civil disobedience-style activism before i got too sick to. because thats all that will save us...

if you read this and you're someone who's more moderately ill, not totally housebound, a little energy to plan and think, or are a caretaker, i beg that you consider doing htis.. the nih is spending pennies and doctors are just working with not that much even good specialists
 
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Dear Raghav,
Very interesting, and thank you. The one worry I have is the possibility of 'crashing." If the system gets stimulated artificially as it were, there can still be horrific crashes. These are familiar to folks who have pushed through their PEM, in order to get a bit of life.

Exactly this. I’ve found stuff that gave me more energy and automatically I become more active, not much but a bit and it works for some days or a couple of weeks maybe and then I crash and I end up worse than I was before.
 

Rufous McKinney

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If theres one regret i really have in my life, its not getting engaged
Somewhat tripping that you've said this because: that is entirely how I felt yesterday. I failed to grasp it could get THIS bad. I didn't really want to believe I could become THIS incapacitated. I am thinking back 5, 8, 10 years and being told: if you feel this horrible now, whats gonna happen in ten years? Oh, this is the positive news page.

So I am now feeling internally militant in a body thats unable to: do anything much more. Just maintaining a drivers license is now looking iffy.
 

Hip

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I am curious about this one. @Hip have you looked into this
I have not come across that one before; looks like it is still in clinical trials.



DCA (dichloroacetate) is a mitochondria energy enhancer that has now been shown effective in two ME/CFS studies. It only seems to work for around 1 in 3 ME/CFS patients, but that's normal for most ME/CFS treatments to only work for a subset. The studies found DCA is less likely to work for those with autoimmune comorbidities. Refs: 1 2
 

debored13

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I have not come across that one before; looks like it is still in clinical trials.



DCA (dichloroacetate) is a mitochondria energy enhancer that has now been shown effective in two ME/CFS studies. It only seems to work for around 1 in 3 ME/CFS patients, but that's normal for most ME/CFS treatments to only work for a subset. The studies found DCA is less likely to work for those with autoimmune comorbidities. Refs: 1 2
I thought those studies didn’t have a control arm or Weren’t blinded
 

Hip

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I thought those studies didn’t have a control arm or Weren’t blinded
You are right, they don't seem to have a control group.

On the other hand, because the effects of DCA are rapid (the first study only ran for 1 month because the effects kick in fast), there's less chance of having spontaneous improvements in ME/CFS (not related to the treatment). Whereas when you have a trial running for 6 months or longer, you probably get a certain percentage of patients experiencing spontaneous improvements.
 
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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.
@Pyrrhus In this OMF science Wednesday post it was mentioned they were working with Eric Delwart - I believe this was the start-up (has now changed names, maybe acquired? I don't know). Here is his bio in case it helps
https://research.vitalant.org/Investigators/Eric-Delwart

In this social media post Amy Proal mentioned she hoped to set up a meeting with Ron to discuss searching for pathogens - I don't know the outcome
 

Pyrrhus

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@Pyrrhus In this OMF science Wednesday post it was mentioned they were working with Eric Delwart -
Thanks, Wiggle, for pointing me in the right direction.

That OMF post is helpful. I’ll include an extract here for anyone interested:

OMF Science Wednesday 11 April 2018 said:
The Stanford Genome Technology Center under Dr Ron Davis partnered with Dr Eric Delwart at the Blood Systems Research Institute to examine patients’ blood for microorganisms.
OMF Science Wednesday 11 April 2018 said:
By comparing the DNA sequences of the microorganisms they found to the DNA of all known microorganisms, the researchers could find if patients had elevated levels of any known microbe. Scientists can even identify organisms no one has ever studied before, finding close DNA relatives to microorganisms by scanning for partial matches. However, they found no unusual microorganisms, or evidence that there was a significant difference in microorganism population between patients and healthy controls.

Next, the scientists looked for cell-free DNA. Cell-free DNA is genetic material that once belonged to a patient’s own cells, or DNA that used to belong to bacteria, fungi, or viruses. When pathogens die and break down in the patient’s body, fragments of their DNA are released into the bloodstream to be eliminated. Some pathogens are challenging to detect if the infection is mostly confined to a particular organ or tissue; however, by relying only on fragments and not on whole, healthy pathogens, cell-free DNA analysis can identify an infection growing anywhere in the body.
(Note that the last sentence says “cell-free DNA analysis can identify an infection”, not “cell-free DNA analysis can identify any infection”)
 
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5150

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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 just know that I'm tired of feeling so bad , all the time, just surviving ,until we have found the reasons for our illness(es). At some point I will die and not care anymore. right? might be today, maybe 5 years? who knows. Hope is a name I almost don't recognize.
 

debored13

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Its the usual argument- 'No answers until more money is given'... What about pineapple last year? He gave millions and still nothing??
Dude, millions is nothing! Nothing! If you want progress in this illness I would say nothing less than 100 million$, but more like 1 billion. If we saw 100 million$ allotted between various researchers tomorrow, RFAs and not just used /squandered by national agencies on their own studies, I would definitely try and hang on longer.

I don’t know what stage of illness you’re at. If you have the ability to walk and travel , or think and talk for a decent portion of the day, organize civil disobedience protests like ACT UP. Nothing will happen in this illness without agitation.

If you are too sick to, I understand. That’s where I’m at. But I wish that a year ago when I could have, I spent time protesting and actually working on getting funding for this disease
 
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DCA (dichloroacetate) is a mitochondria energy enhancer that has now been shown effective in two ME/CFS studies. It only seems to work for around 1 in 3 ME/CFS patients, but that's normal for most ME/CFS treatments to only work for a subset. The studies found DCA is less likely to work for those with autoimmune comorbidities. Refs: 1 2
Thanks for that info @Hip

I saw this study where they tested DCA in MELAS
https://n.neurology.org/content/66/3/324
Conclusion: DCA at 25 mg/kg/day is associated with peripheral nerve toxicity resulting in a high rate of medication discontinuation and early study termination. Under these experimental conditions, the authors were unable to detect any beneficial effect. The findings show that DCA-associated neuropathy overshadows the assessment of any potential benefit in MELAS.
It seems there may be a subset of ME patients with small fiber neuropathy, so DCA may have risks of worsening neuropathy in our disease as well.

Wikipedia says the same thing
https://en.wikipedia.org/wiki/Dichloroacetic_acid
Neuropathy
Neuropathy has been a problem in some clinical trials with DCA causing them to be effectively halted,[8] but a 2008 BJC review found that it has not occurred in DCA other trials.[16] The mechanism of DCA induced neuropathy is not well understood.[17] On the one hand in vitro work with nerves has suggested a mechanism for the neuropathic effect of DCA; with DCA showing a dose and exposure dependent demyelination of nerves (stripping of the nerve 'sheath'), which demyelination was partially reversible over time, following washout of DCA.[18] On the other hand, the 2008 review in BJC [16] states "This neurotoxicity resembled the pattern of length-dependent, axonal, sensorimotor polyneuropathy without demyelination." with regard to the 2006 study by Kaufman et al.[8]
EDIT: Sorry @Hip, I should have looked at the DCA thread where neuropathy is talked about, so you already know about those risks.
 
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