Special Message for you from Ron Davis (video)

JES

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It's worth to remember that even if the metabolic trap hypothesis would entirely fail, it's just one part of the research. From my understanding, they are going to start trials on suramin and hopefully copaxone as well soon. Neither of those drugs rely on the metabolic trap for their supposed effect.
 

FMMM1

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No one said metabolic trap is unreliable. Dr. Davis said that mass spectometer is not accurate enough for their taste and they have to develop a new way to do it where precision will be satisfactory to them.

Also, please remember that both Dr. Davis and Dr. Phair made it very clear during the Symposium that metabolic trap is an unproven hypothesis and could be wrong, as promising as it is.

Don't put all your hopes in it, rather put the hope in the rising number of researchers joining our fight and the hard work everyone is putting in it.

This is a difficult time for all of us and it's alright to take a break.

However, everyone who is frustrated with slow research should put more pressure on NIH director, not take it out on researchers who are actually the only ones giving us real tangible hope right now.

Your anger and disappointment is justified, but you're taking it out on the wrong people.

Fully agree with what you are saying. Lyme disease got 33.9 million (dollars/euros) from the European Union Horizon 2020 (science and technology) fund; ME/CFS got zero. Please think about lobbying for more funding from the European Union.

Here's a draft letter I'm hoping to send to Members of the European Parliament (MEPs) seeking support for research/development of a diagnostic test for ME/CFS. If you can lobby MEPs, or know others who can (e.g. those involved in the missing million campaign throughout Europe), then I'd be grateful for your assistance.
@Vassie @Ben H



*Draft letter to MEPs:
"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects more than one million people within the EU. This illness is characterised by persistent and excessive fatigue, post-exertional malaise, flu-like symptoms and cognitive impairments. Most sufferers are unable to lead a normal life. Those affected are predominately women. Many people with ME/CFS feel that they are labelled as having a psychological condition and that research into ME/CFS is not prioritised as a result of this "psychological" label.

Many of the symptoms of ME/CFS overlap with those of Lyme disease and fibromyalgia.

There are no established biological diagnostic tests for ME/CFS, nor are there any treatments.

Professor Carmen Scheibenbogen, Charite, Germany recently discovered that people with ME/CFS can be separated from healthy people by measuring the expression of three genes.
Professor Julia Newton at Newcastle University found that differences in cellular energy production can be used to separate people with ME/CFS from healthy people.
These discoveries could be the basis of a biological diagnostic test for ME/CFS.

There are other excellent researchers in the European Union working on ME/CFS e.g. Professor Jonas Bergquist Uppsala University, Sweden; Professor Øystein Fluge and Olav Mella Haukeland universitetssykehus Norway.

The European Commission has funded the European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [EUROMENE] under the Cooperation in Science and Technology (COST) program. However, the Commission, in its response to a Parliamentary Question on Funding of research on ME/CFS [E-006901/2017] acknowledge that it had not funded any research into ME/CFS:
"To date, no specific projects on ME/CFS have been supported by the EU Framework Programmes for Research and Innovation."

Request:
I would be grateful if you would lobby the European Commission to ask that they fund research into ME/CFS, including the development of a diagnostic test. ME/CFS affects approximately 1 million people in the European Union; most of them are unable to lead a normal life. The development of a diagnostic test, and effective treatments, would help to reduce the suffering of these people."
 

Belbyr

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I'm being honest and hugely disappointed. The highlight and big star of the Symposium was the trap and now we are told it's unreliable. I'm not blaming the Researchers, I know they are trying but I myself feel like stopping following the whole thing. @Ben H you forever put a shine on things when some of us are hanging on by a thread. Donating, donating endlessly. Nancy Klimas said in a recent video she was closer than anyone to solving this, I've asked a number of times why OMF don't work with her and help her get trials off the ground. She is ready for clinical trial so why not work with her? Ready for trial @Janet Dafoe (Rose49) . I can't understand why there is no link up.
The good news is her trials are underway. A GWS group, a pre and post menopause CFS subgroup, along with a male CFS subgroup. The treatment is about 2-4 weeks for the trap they have found in CFS and GWS patients. I'm sure there will be a lot of post treatment monitoring and biology follow up before anything is released. The cool thing is phase 2 trials are already funded in GWS for them. When the department of defense is giving you $30-40 million a year, you must be doing something right... I agree with you, I really don't know why OMF hasn't reached out to her, or maybe she hasn't reached out to them...? We may never know.

**oops, I read your later post. Looks like you already know what's up! :thumbsup:
 

JES

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I'm not aware of Dr. Klimas having identified a specific trap, is there some source on that? The trap that OMF has identified is a problem with a tryptophan pathway and I'm not aware of anything specific like that being identified in other research.
 

Belbyr

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I'm not aware of Dr. Klimas having identified a specific trap, is there some source on that? The trap that OMF has identified is a problem with a tryptophan pathway and I'm not aware of anything specific like that being identified in other research.
Trap, new homeostasis, system reset, whatever term you want to call it... Nancy uses different terminology. It's all the same idea. She is heavy into the HPA axis. In one of the models they bring down the adrenals, then bring down inflammation in the brain (Does Jared Younger ring a bell here? ;)). She claims the hypothalamus fires out a help signal while the adrenals are suppressed. Then they pull the adrenal blockers, causing a big reset. Apparently the first GWS patient to do it is clinically well now. Phase II is fully funded.

https://sharkmedia.nova.edu/media/MECFS Broward Support Group 08212018/1_0fl7jusw

I think she's in the ball park, subgrouping will be a little difficult but is sounds like the computational modeling is there for the subgroups too. Hence those trials being underway right now.
 
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Belbyr

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It's not the same idea. I don't know where you got that from.
They might be looking at different biology (Kynurenine/HPA axis) but it's all under the idea that 'we are in a trap/hole/disease state'. Both Phair and Klimas have slide shows of the 'trap'.

Robert Phair 2018 slide:



Nancy Klimas slide 2015/2016:



Like Klimas said, this is an immune/metabolic/endocrine illness. You have to hit 2 or more buttons to flip the system, no one button can do it.
 
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JES

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Naviaux has presented to OMF quite similar observations in which the body has partly shut down in a dauer-like response to a constant cell danger, so it may well be that the findings of OMF will eventually converge with what Klimas has found. Naviaux is also in the process of starting trials of suramin, but availability of suramin was still an issue according to the OMF symposium Q&A. Finally, there is the observation that ME/CFS gene expression is similar to a trypanosoma infection, so confirming/refuting the existence of an active pathogen should also be an exciting development.

IMO there is plenty on the table here, most of which Davis probably cannot speak about much yet.
 

Tally

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They might be looking at different biology (Kynurenine/HPA axis) but it's all under the idea that 'we are in a trap/hole/disease state'
It's not the same idea.

It has one similar part - that there is no pathogen but that our bodies themselves have a fault that keeps us sick (as do countless other diseases).

Other than that those are three very different hypothesis, with different triggers, different causes, different disturbances keeping us in this state and, most importantly, which would require vastly different cures.
 

used_to_race

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Sorry that Ron looks so flat--just exhausted mentally and spiritually--hope he can get some rest.
I think that's partly just his mannerisms - not to say he's a "flat" or "low-energy" guy, but he has kind of a monotone way of speaking that makes him appear more tired than he actually is. When I talked with him a few months ago he was very switched on for a long time and I came away with the impression I had just spent time with a very driven, very intelligent person. I'm sure anyone would be tired with the demanding task he has to face, and I'm glad it's him as opposed to some of the "energetic" salesperson personalities that have cost patients millions of dollars selling snake oil.
 

boohealth

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I think that's partly just his mannerisms - not to say he's a "flat" or "low-energy" guy, but he has kind of a monotone way of speaking that makes him appear more tired than he actually is. When I talked with him a few months ago he was very switched on for a long time and I came away with the impression I had just spent time with a very driven, very intelligent person. I'm sure anyone would be tired with the demanding task he has to face, and I'm glad it's him as opposed to some of the "energetic" salesperson personalities that have cost patients millions of dollars selling snake oil.
Of course he’s driven and intelligent. Look at his accomplishments and how unflagging he is in regards to CFS. I’m not sure who you are referring to in regards to snake oil scientists?

Anyway, I think he looks and sounds drained. Hope he gets some rest over the holidays.
 

Research 1st

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So far the Jarred Younger finding presented at the OMF conference is the most repeatable and robust finding associated to ME because it's not a far out all encompassing idea (metabolic trap) but part of a puzzle similar to other established disease like dementia. It also allows a get out clause for infamous British psychiatry steering American CFS CBT/GET recommendation by CDC as its already established that lactate induces neuropsych symptoms allowing for the psych control to be proven 'correct'. Politically, this is very important for those who don't want to be humiliated and exposed by patients and allied researchers and sued. So the simplicity of elevated brain lactate in ME (shades of insulin validating the "mysterious," condition Diabetes) cannot be refuted outright politically, at least not as easily.

In contrast, when we go down Ron's epic sci fi blood findings ('CFS blood turns healthy control blood into CFS') and metabolic trap hypothesis potentially finding future links with CFS energy depletion shared in Lyme, Autism, MS, Cancers and so forth your grant money will be denied, because, if as proposed multiple other devastating diseases may all include variants of the "mysterious" CFS pathology, then the only logical linking factor in mostly educated, mostly white (genetic predisposition) Westeners is shared post 1950's exposure to contaminated vaccines and contaminated people.

This is ultimately why the NIH reject Ron's work. The 'link' to a trillion dolar corrupt industry, big pharma and governments who treat their citizens like vermin and give them labels like CFS in the first place.

It's far safer as a CFS researcher to stick to one core finding, say nothing publically, and get cast iron proof before talking in public of links to other conditions no government wants to fund and also retain as "mysterious", to save a fortune in compensation payouts. The second you do that (act with extreme compassion) you get sanctioned by the retirement age powerful men sitting in offices who found ways to halt your progress long before you even discovered the cause because they know the cause. The cause is their own recklessness and hence they've been funding mental health chronic fatigue research only, for 30 years, knowing full well this is a dead end road to nowhere.

Remember, the people who fund such chronic fatigue research (what holds Ron back) despise those who find the cure because a cure can lead to a cause. NIH and CDC will only allow an effect of ME (intentionally reduced to a harmless chronic fatigue) never a cause. At best, the NIH will only allow CFS to become another "mysterious" MS and by allow that's deny all appropriate funding and resources and let private donors take 50 years to get somewhere independently.

NB: In 20 years, the people who know the truth and hold the cards in this game of chess will be in their late 70's and 80's or dead, along with the patients and older CFS biomedical researchers and scientists. They know this hence they refuse funding but still fund far weaker pointless psych fatigue or general fatigue studies.

The only way this is defeated, is finding cause and effect in private for ME and sharing your findings in private by obtaining donations from a billionaire dying of CFS who donates $300 million to the OMF in private. Try doing that without such finances and access to 800 patient studies that cost tens of millions of dollars a go.

Catch 22, and thus a brain scan showing an metabolic energy effect and defect linked to neuroinflammation of unknown cause (Jarred Younger' s OMF presentation), is far more politically acceptable. It also gives potential for other CFS patients to replicate the research independently using modern 3T open bore MRS scanners measuring brain metabolites such as Lactate/NAA/Choline/Myo-Inositol - spectra. In contrast, no patient in the world can gain access to Ron's novel ultra specialist and proprietary technology experiments like 'nano needle' that are 50 years ahead of the times.

Ron's science is simply too advanced for the sensitive political situation of who is to blame for CFS spread. The 2019 grant writers in NIH will always demand:

Unexplained chronic fatigue focus.
No link to costly other illness.
No ability to overturn psych to pure organic.
No ability to expose those in power.
No infectious origin.
Cheap treatment if cure medication proposed.
No proof of blood product spread.
No proof of post vaccine immune activation.


So in CFS biological research searching for an outright cure and thus cause, a game of cat and mouse but the cat is the multi million dollar grant writer toying with when to pounce by introducing a next barrier: discredit findings and introduce scandal.

Once the cause of ME draws closer in 2020 this will all kick off again and it will happen by the British replicating the PACE trial, NIH still denying appropriate research funding for Ron and Co at a governmental level (British charities are already resorting to funding American CFS researchers) and reintroducing the concept of psycho-neuro'immunology in the press. This will be the worn out idea of functional illnesses (F48.0 CFS the British call CFS/ME) being associated to mind-body. The associated idea of EBV or similar + stress causing CFS and the treatment being non specific, vague, CBT GET lifestyle adjustment and no need to worry about having a crippling metabolic disease as "that didn't pan out".

To avoid such defeat in CFS medico politics you have to think ahead of those who are already ahead of you, creating a road block. Don't travel by road, travel by not travelling.

The OMF need to get a whole community behind them, somehow, of those without CFS who can't be attacked politically on social media. SJW's, faith groups, racial minorities, LGBTQ etc. With this influence, one day, someone allied to these groups (used to their own form of discrimination) will, maybe, decide to make a huge research donation to the OMF. That's how we overcome the road block, a stunning funding opportunity maybe from a huge corporation like MS, Apple, Google who want sufferers to "come out with CFS" in public and they can take advantage of this by sponsoring it.
 

Belbyr

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It's not the same idea.

It has one similar part - that there is no pathogen but that our bodies themselves have a fault that keeps us sick (as do countless other diseases).

Other than that those are three very different hypothesis, with different triggers, different causes, different disturbances keeping us in this state and, most importantly, which would require vastly different cures.
An idea is a concept. Traps are the same concept. A part is a piece or segment of said concept. They have chosen different pieces of the same concept to attack. Klimas just happens to have a computational, cell, animal, and now 'we think' a human model that is clinically well in GWS (which is clinically identical to CFS). There are computational models of CFS, but last I saw her clinical trials going into effect now are using the same treatment on GWS and CFS. Wish I could find the link I used to have. It was the same drug regiment.
 

Tally

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They have chosen different pieces of the same concept to attack.
Not really.

Reseting HPA axis, turning off cell danger response and lowering the amount of tryptophan in cells are not different pieces of the same concept.

Never say never, so maybe some day far down the line they find something in common, and it's not necessary for all the others to be completely wrong once one hypothesis proves to be right, but right now they are working on vastly different concepts, in different parts of the body, and solving them in different ways.

I am still not sure where you got the idea it's the same thing, especially after Dr. Dafoe clearly said in this thread that Dr. Phair and Dr. Davis are the first ones to work on metabolic trap hypothesis.
 

Judee

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I also think that Dr. Davis is trying to work on the problem from all angles, i.e. finding the cause, finding the cure, and finding a way to equip MDs everywhere so they can test patients in a reasonably affordable and duplicatable way.

I am impatient too but we just have to know he is doing his best to find the answers for all patients asap.

He also has his heart in this research since his own family is personally affected by this terrible disease.
 

boohealth

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@Research 1st
Ummmm...what is the genetic predisposition that all Caucasians have which renders them vulnerable to cfs from vaccinations?
This would be a genetic vulnerability related only to skin color?????

It is unfortunately not as simple as you wish. There’s likely no knowledge aforethought. Complex multi systemic conditions with variable causes are the toughest for medicine to deal with or even understand.
 

Belbyr

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Not really.

Reseting HPA axis, turning off cell danger response and lowering the amount of tryptophan in cells are not different pieces of the same concept.

Never say never, so maybe some day far down the line they find something in common, and it's not necessary for all the others to be completely wrong once one hypothesis proves to be right, but right now they are working on vastly different concepts, in different parts of the body, and solving them in different ways.

I am still not sure where you got the idea it's the same thing, especially after Dr. Dafoe clearly said in this thread that Dr. Phair and Dr. Davis are the first ones to work on metabolic trap hypothesis.

No, where things got confusing for you is I intentionally said 'trap' not 'metabolic trap'. Which like I already stated, other researchers believe that we are in a chronic disease state with no active infection (that we know of). Is Janet right about Ron and Robert owning the 'metabolic trap', yes. That is why I did not say 'metabolic trap'.

I did not want to correct her in my statement because as you can see on the first page of the topic... I am rooting for the Davis group, and was the first one to make a statement hoping Ron was not having issues. I would have felt bad correcting Janet because I don't think she knew what I meant. Now I have to unfortunately do this instead of letting it slide because of you. (Janet please take no offense I'm on your side)

I could careless who 'wins' the CFS discovery/cure. The point I was trying to make, and someone here completely missed it. The fact that more researchers are starting to agree with 'the trap' (or insert any other noun for trap you like) theory, or in other words 'a chronic disease state not caused by a chronic infection (that we know of) is a good thing. There are many other good researchers out there that also believe that about our bodies and have been working on it for quite some time(papers dating back into the 80's even) When I see a lot of great minds converging on one big idea(one big trap we are all in), it gives me hope. How to fix it is where the difference lies at this moment.

Again, no offense towards Ron, or Robert, or Janet. I'm just excited to see a lot of smart people from different teams starting to see this all from the same perspective, the difference lies in which chemicals need to be flipped. Final words from me :thumbsup:
 
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