The day after my brother’s wedding I shot down to San Diego to meet Rachel Riggs and a doctor with ME/CFS. Rachel, who has turned into a volunteer patient coordinator had enrolled me in Naviaux’s next metabolomics study. (Resistance, I quickly surmised, was futile – not that I was putting up any.) Rachel chatted away on the phone with another potential participant as we drove down to Naviaux’s lab. I was one of the last to give blood.
After I gave a surprising small amount of blood we tromped down the hall to meet with Dr. Naviaux in his workroom, the industrial looking pipes overhead bringing back memories of college labs in the past. Ducking into one lab Rachel showed me two $500,000 dollar mass spectometer machines each the size of a large microwave.
Gracious, as always, Dr. Naviaux offered us some coffee or tea. A bit spacey from my fast I tried out some green tea – at which point my nose immediately stopped up. At the first sound of my sniffles Naviaux turned to me and said we would have to note that for the study. (No one with a cold is allowed in the study.) Those sniffles cleared up later. (Dr. Naviaux, if you read this I promise it was from the tea…)
The New Study
The first thing I asked him about was the expanded metabolomic ME/CFS study I’d just given blood for. Naviaux’s initial metabolomics study generated some big waves in the ME/CFS community. Subsequently Maureen Hanson’s and Fluge and Mellas’ studies found broadly similar findings. The Simmaron Research Foundation is using Naviaux’s results to inform their own enlarged spinal fluid study, and the Solve ME/CFS Initiative just funded a metabolic analysis of B-cells. Plus, in the wake of Naviaux’s study we took a new look at what turned out to be some earlier fascinating Australian metabolomics studies. Naviaux’s study opened up a new world for many of us.
Naviaux’s current study is about 50% bigger than the first and will contain roughly equal numbers of men and women. Naviaux will be analyzing his own mass spectrometer results, but in the second part of the study Oliver Fiehn at UC Davis will be implementing Naviaux’s methods on a different mass spectrometer machine. Fiehn’s West Coast Metabolomics Center is an NIH Regional Resource Core designed to advance the use of metabolomics in medical research and other fields. Fiehn is a well-published author who recently co-authored a metabolomics cerebral spinal fluid study which predicted the progression of Alzheimer’s with 99% accuracy.
The analysis for the expanded ME/CFS study should be done by July of next year with the paper published hopefully 4-5 months later.
A Conceptual Framework to Guide Treatment
Naviaux’s metabolomics work in ME/CFS is set off from others by his discovery of the major role played by sphingolipids. These particular metabolites, which are heavily involved in the stress response, inflammation and the body’s sensory networks, are one of about 30 metabolic pathways that play a role in Naviaux’s cell danger hypothesis. The association of ME/CFS with a dauer state folds ME/CFS into a biological framework Naviaux understands and has ideas on treating. That’s a big conceptual step forward for ME/CFS.
No Structural Damage
Naviaux doesn’t believe that the kind of structural damage that occurs in say, multiple sclerosis, has occurred in most cases of chronic fatigue syndrome. Nor has any intrinsic damage occurred to the mitochondria of most people with ME/CFS – a good thing.
Naviaux has plenty of experience with genetically determined mitochondrial diseases; he developed one of the first mitochondrial cocktails in the mid1990’s to treat them. These diseases, he believes, are much harder to treat than ME/CFS will end up being. The fact that the majority of sufferers of ME/CFS probably don’t have physical cellular damage, but instead are caught in a disease state that blocks healing and recovery, is a very hopeful message.
A “Signaling” Disease
ME/CFS, he believes, constitutes more of a “signaling” problem than anything else; the mitochondria in ME/CFS patients’ cells have gotten the message to hunker down, to last out the storm. That’s left them stuck in a state in which their energy production is turned mostly toward cellular defense – leaving little energy available for other functions needed to heal and thrive. The net result is a state of low energy reserves and slow recovery after either physical or mental exertion.
The core problems in ME/CFS, Naviaux believes, lie in metabolic signals that keep the cells hunkered down in a low energy state.
A signaling disease
Ron Davis and Fluge’s recent work suggests Naviaux may be right. Their work – still in its early stages – suggests that ME/CFS cells can flourish in healthy patients’ serum while the energy state of the cells of healthy people tanks when put into ME/CFS patients’ serum. That finding provides hope that ME/CFS cells can be revived, and that the key to reviving them lies somewhere in the metabolic processes which have created the “signal”. That suggests that the potential for complete recovery is there.
The Gist
- Dr. Naviaux’s expanded ME/CFS study will probably be published in the fall of next year
- Dr. Naviaux believes that the mitochondria in ME/CFS are probably not damaged but are being turned off by metabolic signals produced in response to an threat such as a pathogen.
- Early work by Ron Davis of Stanford and Fluge and Mella in Norway suggest that Naviaux is right; some in ME/CFS patients blood appears to be turning off their mitochondria
- Personalized treatment plans will require addressing the core metabolic abnormalities found in most ME/CFS patients plus the individual metabolic issues found of each patient.
- Treatments that work for a time and then stop could be the result of not addressing all the metabolic needs of an individual.
- Naviaux believes it’s possible now to significantly improve the functioning of many people with ME/CFS; the more severely ill will take more time to figure out
- Naviaux will begin to test his hypotheses in small clinical trials to begin soon.
Complex Disease – Complex Treatment
It’s probably not going to be simple, though. Our bodies are a series of complex, integrated systems that have found a new normal. Naviaux’s study suggests that sixty or so metabolites that participate in 20-30 different metabolic pathways have gone awry in ME/CFS. Dr. Naviaux’s methods suggest that an average person with ME/CFS has about 40 metabolic abnormalities, but only about 10 (25%) of those abnormalities are specific for ME/CFS. The other 30 (75%) personalized abnormalities are clues to the specific path an individual followed in developing ME/CFS, and should, ultimately, be able to help doctors develop personalized treatment plans. Understanding how to best build up those depleted metabolic reserves will be part of the clinical trials that Dr. Naviaux’s team has planned for the near future.
Metabolic pathways need to be restored
Treatment of ME/CFS is not a simple matter of “replacing what is low and removing what is high”. This is because the body is actively creating and even defending the low energy state of a human dauer-like syndrome to help it to outlast a perceived danger. Low levels of a metabolite could result from the body limiting the availability of that metabolite so that an invading pathogen cannot use it.
It turns out that the old adage “Feed a cold, starve a fever”, has a metabolic basis. During serious infections (more serious than the common cold) the body can more efficiently fight an infection by redirecting its available energy away from housekeeping functions and toward active cellular defense. Giving one of these key metabolites back to restore “normal” levels to someone in this state can sometimes make people feel worse. The integrated metabolic network may be why treatments sometimes seem to work in ME/CFS only to fail later or cause more symptoms. Until the system as a whole is healed a diversion of energy into one pathway can cause others to be depleted.
New networks or “metabolic reflexes” that have formed as a result of the illness add another layer of complexity. Naviaux believes that metabolic “reflexes” – such as the metabolic responses to stress – are as diagnostic for disease states as the reflex you experience when a doctor taps the front of your knee with a small hammer. The goal is to change the conversation between the cell nucleus and mitochondria so these metabolic networks can be restored back to normal.
My sense was that Naviaux will first try to turn off the dauer-like state and then try to clean up the mess; i.e. restore the metabolic networks depleted by a long term immersion in the dauer-like state.
Returning the Metabolism to Normal: A Ecological Approach to Chronic Diseases
Naviaux’s more ecological approach – looking at the system as a whole – is different. In the end, though, it’s all chemistry; one reaction leads to another and another and another. It wasn’t until recently, though, that our ability to analyze those reactions using metabolomics and statistical analyses made understanding the whole, if not easy, at least possibly within reach. Naviaux believes he’s developed bioinformatic tools that enable him to dissect the metabolic and molecular features of virtually any disease.
He believes that a treatment for a chronic disease should work like a cast does for a broken leg; you use it for a certain amount of time, and then go on your way. His philosophy around treatment sounds a bit similar to that seen in functional medicine; it’s about empowering the body to resume the processes that maintain health. Once those processes are restored the body should be able to maintain itself.
Right now, he believes this approach can probably significantly improve the functioning of people who are not so severely affected. The more severely affected will take more time to understand. As noted earlier Naviaux plans to begin small ME/CFS treatment trials shortly.
Big (Little) Donation Drive Update – Thanks to 89 donors HR is within 30% of our goal. If you think that metabolomics might hold the key to ME/CFS (as I do) you can rest assured that Health Rising will be covering this topic thoroughly. Please help us to do that by supporting us this December. Your small contributions make a big difference to us. Find out how here.
Thanks Cort for a very interesting report. I´m diagnosed with ME/CFS by two ME-doctors. Though, I happened to have three vectorborne infections after being tested toroughly (most patients don´t). After IV antibiotics I was almost back to normal health with energy, no PEM and normal muscle strength (mitochondrias healed) after being sick for nearly 10 years. Brainfog and most other symptoms were also gone. Unfortunately my symptoms were back after 4 months. I got another round of antibiotics and my Lyme- and ME-symptoms were gone again. They returned and I´m on another round of treatment, still positive for Lyme.
I would like to send the message to all researchers to include testing for at least bacterial and virus infections, as they so often are totally missed and seem to be causing, or connected, to the mitochondrial issues. Maybe due to the impaired methylation and therefore down-regulated Kreb´s cycle?
And toxoplasmosis. I have sky high antibodies now for at least 4 years. Went thru 2 rounds of toxo treatment on the thinking it might clear it up. Went even higher.
You will take Antibodies to your Grave these were the words said by my former Microbiologist who is tops in the World with HIV/Aids he said patients need to understand the role more of antibodies it does
not mean one hs a current infection it is something from your past he also said CFS is a state of activation. He tested me for everything nothing was coming up anywhere my recent trip to an Immunologist
confirmed as well my immune system is fine it functions really good no CVID either he even says so many with CFS patients think they have Lyme he says they have also activated antibodies they do not
have presently a Lyme disease either.ANTIBODIES? Who TF Cares…
Is Naviaux still recruiting for this study? or is it closed? I’m in San Diego. Couldn’t find info online. thx
I’ll give Rachel your contact information if that’s all right.
Yes plz thx!
I’m in San Diego too; would love to help!
Hi Cort, I am very interested in this study as well and am diagnosed with ME/CFS. Could you also pass along my contact information to Rachel?
Sure thing
Please, could you put my daughter on your list as well? She would love to participate in Dr. Naviaux’s study. Thank you.
Hi Sharon,
The next study is the Analyzing Individual Metabolimics Study (AIMS). http://www.sisoh.com/analyzing-individual-metabolomics-study-aims/
You can sign up to participate at http://www.sisoh.com/participate-in-metabolomics-research-at-sisoh/
Susan Friedl
Gordon Medical Associates
Science in Service of Humanity
Gordon Medical Research Center
Cort
I’d also like to be in touch with Rachel regarding the study. Thanks
Hi Joyce,
The next study is the Analyzing Individual Metabolimics Study (AIMS). http://www.sisoh.com/analyzing-individual-metabolomics-study-aims/
You can sign up to participate at http://www.sisoh.com/participate-in-metabolomics-research-at-sisoh/
Susan Friedl
Gordon Medical Associates
Science in Service of Humanity
Gordon Medical Research Center
Can you give her mine too? I live in Santa Monica?
Will do
Hi Cort, I am somewhat new to the site and don’t know the way to respond to other emails that have gone out. Do I need to be on facebook?
I am very interested in the recent PEM Busters info that came out. Are you supposed to do all of them, just one or two maybe? I have been trying the baking Soda and CoQ10 (email just says Q10; I’m assuming that’s CoQ10?) but have not been exerting much. The theory behind the Busters resonates w my issues!
If you can tell me the best way to connect w all of the info that comes out, that would be great. I am signed up for the emails.
THANK YOU
Marilyn, please see my comment to Nat, below…
Somehow this showed up as my husband, Joe! Marilyn, please see the comment to Nat, below.
Rachel
Thanks for this update! Your work is very much appreciated!
Hi Cort, thank you for all your excellent write ups.
I was wondering if someone from NY could provide blood samples and participate for this new study without travelling to his lab ? Thanks
Balaram
I would be interested as well. I live in WV. My PCP is coming around. I’m sure he would help get what is needed.
Thank you for this report, Cort!
Is there any news of the publication of Dr. Naviaux’s autism study you teased us about? You said it would be coming in December.
I’m such a tease :). I don’t know when it will be out and I don’t know what’s in it but Naviaux clearly feels its an important study. I think that’s the next thing we are going to hear from him and I look forward to reading it and covering it – particularly since Naviaux believes the two diseases have significant similarities.
That is SOooo good to hear!! I have been saying that these diseases have incredible overlap for years. Before disability I used to work with an ND that specialized in autism. The detox, gut, and pathogen issues especially are nearly identical.
Ha ha! I hope it come out soon.
I agree, Kristina. I can’t wait to read it.
“Naviaux’s more ecological approach – looking at the system as a whole – is different. In the end, though, it’s all chemistry; one reaction leads to another and another and another. It wasn’t until recently, though, that our ability to analyze those reactions using metabolomics and statistical analyses made understanding the whole, if not easy, at least possibly within reach.”
Ahhhhhh. What a wonderful paragraph and grounds for real hope.
The whole is always more than the parts. And how sick we all are of being treated for the symptoms. This is wonderful and exciting and fascinating.
How can I get my blood to Dr. Naviaux? I’m already at the biobank at OMI not sure if he can use it or you soecifically have to be part of the study. I would love to be part of the treatment trials.
Nat, I’m sorry but this particular study (study #2) is now closed – we just wrapped up the blood collection phase recently, in fact I believe Cort was our last blood draw!
If you would like information on study #3, here is a link: https://www.gordonmedicalresearch.com/
Rachel
Cort, you are such a great writer – and you remembered details of the conversation that I did not! What would we do without you 🙂
Dear Rachel,
is it possible to reach you,say by email? Or is this not really a possibility.
Thanks
Hi Francis,
My email address is rachriggs2003@yahoo.com
Thanks Rachel, that brings me back to leaving after the fascinating discussion with the doctor with ME, who’s name escapes me, when I, in typical ME/CFS fashion, left all the notes from the talk on your kitchen table 🙂
“Treatment of ME/CFS is not a simple matter of “replacing what is low and removing what is high”. This is because the body is actively creating and even defending the low energy state of a human dauer-like syndrome to help it to outlast a perceived danger. Low levels of a metabolite could result from the body limiting the availability of that metabolite so that an invading pathogen cannot use it.”
Does it not make more sense then to address the invading pathogen instead of trying to artificially drive the metabolism of the body in a direction it doesn’t want to go? Will we not just be assisting the pathogen by doing so?
Thank you for this informaton. I am wondering if it is possible to participate in the upcoming treatment trials. I am in Orange County,the county next to San Diego County.
I imagine that if the pathogen is still there it HAS to addressed; otherwise turning off the danger response would be bad news. If the pathogen is not there but the cells are still stuck in the danger response, that’s another matter.
This statement brings it back around to my feeling that possibly what we many consider a “symptom” could be a compensatory response. We do have to be scientist and get to the core cause. Example: could our body be lowering our Vit D levels for a very good reason (too high calcium – that can create biofilms and propagate pathogens, virus and bacteria) and that’s why supplements don’t improve low levels? Could we be fueling an even greater problem by trying to correct perceived imbalances. Or is the perceived imbalance in fact a “cause”, not a symptom?
With pathogens, is our body trying to fight them off and causing other symptoms? Example: is my vitiligo and higher peroxide levels trying to kill off known protozoa or are the protozoa causing the higher peroxide levels and bleaching out my skin? (Eventually high peroxide could lead to cancer. Need of catalase, glutathione and possibly SOD – here.)
We need to look at everything with reverse possible cause and effect. Then determine the correct spin.
Issie
I agree Issie. We are not ‘just’ stuck in a danger response, there is something wrong! The abnormal stressresponse could be compensation or a cause. I only find the sphingolipids interesting. I think that people with the flu do also have a low metabolic state, so these findings (Naviaux) don’t say anything at this point. Sorry for my skeptism. I think this wil be the next ME/CFS hype. But let me be wrong.
Weyland i think it’s because the pathogen is no longer a threat tho the body perceives it as such. this is why anti-virals have not worked.
It may not be a virus, but a protozoa – the one I have is Protomyzoa Rehumatica. So far, there is no way to get rid of it. Dr. Stephen Fry, doc who discovered it has found it in those who don’t have illness symptoms too. It’s those of us with faulty autoimmune response that display the sickness response. It is similiar to malaria and can be gotten from mosquitoes. It can be passed on – they think. The body can fight pathogens by turning up defense. That defense however, can cause other issues and symptoms.
Issie
Who said antivirals haven’t worked? Montoya and Lerner published studies showing a clinical response to herpes antivirals. Ampligen clearly works for some. There are three interferon trials that have shown some efficacy. I personally have improved on antivirals.
While the trigger for one’s ME/CFS may have been infectious the metabolomic results dont suggest there is an ongoing infectious disease process. Rather, it appears the body has become stuck believing it is still under an assault that has since passed. But if this theory is incorrect then you raise an important concern.
Yes, this is what I believe too! I think we are often so desperate for answers and symptom relief, we become fixated on the precipitating cause – but it’s likely long gone. In fact some of the treatments (such as antivirals) have caused symptom progression in a number of patients…
The metabolomic results don’t show an *acute* infection, but nothing has been said about a chronic low grade infection. Anyways, this evidence is highly indirect. We should focus on proper direct viral assays of tissues for viral genomic material as well as viral proteins before ruling persistent infection out. The evidence to date suggests an infection is present.
That’s what my doc says, all indications are there is an infection of some sort. Whether viral, bacteria or protozoa. With me I have high inflammation markers in more than one type test.
My doc wants me back on Doxycycoline as it helps modify autoimmune response, tames protozoa and can protect against some cancers. It is also used for inflammation. And there are indications that it can help moderate the autonomic nervous system.
https://www.healthrising.org/blog/2013/07/11/cooling-the-flames-possible-approaches-reducing-neuroinflammation-chronic-fatigue-syndrome-fibromyalgi/
“Doxycycline (and other tetracycline antibiotics such as Minocycline) has been shown to reduce glutamate excitotoxicity and may be effective in treating pain via its inhibitory effects on TNF-alpha (Cazalis et al, 2008) which may also contribute to neurotoxicity (Takeuchi et al, 2006). One theory (yet to be tested) proposes that Doxycycline treatment may help improve the mitochondrial content of skeletal muscle in metabolic syndrome (White, 2010 – research proposal).”
I’m cycling it again. I didn’t have any herx reactions this time….but I do feel better. We will see. Before it gave me my life back. I wasn’t completely well….but could function. But then it stopped working.
I hate to be on low dose antibiotics and am being careful to have various probiotics on board. Since the immune system is mostly in the gut, I want that ecology healthy.
Issie
Great article! I live in Los Angeles and am curious about Dr. Naviaux’s future studies as well. How would someone contact Rachel in order to get more information? I have had an initial Metabolon done by OMI in case this is helpful. Thank you in advance for any info.
I will pass everyone’s contact info onto Rachel.
Thank you and I really appreciate it!
Ginger:
If you are willing I’d like to correspond Re; Metabolon results. I have original results from my testing too. Wld love to “chat” with you.
Thanks, Lisa
Thank you Cort (and Rachel).
Interesting and exciting research, again made accessible for my M.E brain. Thanks Cort.
Thanks for your support Diane 🙂
‘This is because the body is actively creating and even defending the low energy state of a human dauer-like syndrome to help it to outlast a perceived danger.’
so it’s now all in the cell-mind? ;o)
If only the cells would just try a little harder! They’re probably just in it for the benefit payments…
Our body charged with positive electron. If we contact with negative charge for long time, our body charged with negative electron. Our 5 major control system charge with negative electron, our 5 major control system is weak and sleep. And we enter mental disorder, chronic respiration problem, chronic digest problem, chronic circular problem, or pain. We enter chronic fatigue syndrome. CFS may not a disease, may result several disease. It may easy to cure. First remove negative charge source( some negative charge phone, toxic bra cloth glass bedding, water veins above the bed etc.. And body electric tune up for remove the body negative electron.
I think looking at the big picture is essential to effectively treat this disease. ATP is the currency of energy. Many papers have addressed the energy deprivation of CFS/ME and FM. Dr. Bengtsson and Henriksson, two Swedish researchers, biopsied swollen tender areas in trapezii and found a 20 percent reduction in ATP. (1989) Lindman and Srobel found increased P1 and decreased phospocreatine and low pH in contracted spinal erector muscles of fibromyalgics using 31) magnetic resonance spectoscopy. Phosphate is concentrated and energized in mitochondria by triple bonding with adenosine to form ATP. Though phosphate successfully binds matrix hydrogen it also leads to cellular fatigue by blocking egress of H and creating a proton deficit in that space, per Paul St. Amand.
Here’s my recovery story, and others too.
Hi, thank you Cort for this up-date. I find this research really heartening. It does make me wonder how this could fit with the rituximab finding **IF** the phase III trial in Norway proves positive. I am also curious, and just posting here as I’m not sure how to start a new thread, about the link between ME/CFS and non-hodgekin’s lymphoma (quick google reveals there seems to be a significant link) plus there is this research currently going on at University of Albany in NY http://www.albany.edu/sph/56198.php . Two close relatives of mine have had non-hodgekin’s and were treated with rituximab. I have ME/CFS so to me there does seem to be an obvious connection. I wonder, Cort, if you might consider looking into this when the results of the research at UofA come out. Could this be a sub-group? Just a thought… it’s frustrating to feel that there is a link here but not to have any of the scientific knowledge to understand it at all or even to know the right questions to ask. Thanks 🙂
Hi Tia, in my understanding the link between ME and non-hodgkins lymphoma is the Epstein-Barr Virus. EBV links nicely to the Rituximab-work going on in Norway, since Rituximab basically destroys B-cells. B-cells are precisely the kind of cells preferred by EBV, the virus installs itself in the B-cells and takes over. This could be why only some patients seemed to react well to Rituximab, maybe those with an EBV onset of illness? I so much hope they get some very clear results out of their study!!! Back to the study by Naviaux, I can certainly see before me a trench-warfare between EBV and my body, my body trying to cut the supplies for EBV! I don’t know of a medication reaching virus proberly once they establish inside cells….
Thanks Kit. Yes, let’s hope for some clear results!
Cort and Rachel,
Thank you for this very promising information. Cort You have outdone yourself with this report. It is so well written with great flow and thoroughly explains what you are reporting. I am filled with hope that Dr. Naviaux’s work and the related work of others will culminate in real answers for us all and sooner than I’d thought possible.
Issie,
I also have skin bleaching, and in all the 11 years since my CFS diagnosis no one has ever addressed it or explained it to me. Now, after reading your comment I was prompted to google it and found this and it makes sense that it may be a result of the underlying factors of ME/CFS. I wonder how many others have this as well.
Vitiligo may result from a number of factors — autoimmune, oxidative stress (excess of hydrogen peroxide), neurotrophic (interaction of melanocytes and the nervous system), and toxic (substances formed as a part of normal melanin production actually being toxic to melanocytes) hypotheses have been advanced. The mechanism involves progressive destruction of selected melanocytes, probably by cytotoxic T-cell lymphocytes.
Thanks again Cort!
Cause and effect. We try to seperate every “symptom” and make a new “dis-ease” of it. We are all one body. Maybe it’s not different illnesses, it’s different puzzle pieces.
Issie
I have never wanted anything more than I want Neviaux to succeed. I am sure you can all appreciate that there is absolutely no hyperbole in my statement.
I think this idea that we can fully recover by shifting the body out of this dauer state has serious merit. Three times during the course of my illness (nearly 4 years) I have had instances where I have felt something “turn off,” as it were, which was followed by rapid – and I mean RAPID – improvement, only to relapse within 24 to 48 hours.
The first time was as a result of an intense spiritual ascension that came about from prolonged and focused meditation practice. I have been practicing meditation for a long time and I have never experienced anything like that before or since. The second time came somewhat out of the blue when supplementing with DLPA. I cannot recall the circumstances of the third. I have never been able to recreate the event.
In each instance it felt like my nervous system almost deflated. It was so rapid that it too place over maybe 2 or 3 seconds. That would be followed by the most refreshing and restful night sleep I have had since I got sick, and the next day I would feel maybe 5 to 10% better, which I am sure you can appreciate is a remarkable leap for such a short period of time. I am in the severely sick camp.
If Neviaux can tap into that, I will be the happiest man alive.
Let’s hope!
When I try to increase my metabolism I can sometimes feel worse. So that statement made complete sense to me. I think that the energy being low causes the immune system to function badly (no energy to work with). So possibly some of the infections are opportunistic. They will have to decide what comes first. Bringing the metabolism back online or stopping what is giving the signal. I am intrigued but this is going to get complicated. I hope they work with microbe discovery project.
I’m curious if there has any talk about bone marrow transplantation???? Why not kill off everything–reset
the whole works???? Any thoughts? Anyone ever ask Naviaux
if bone marrow transplant is plausible treatment?
Wow! Two hopeful and exciting articles in short order! Thanks, Cort! Wish I could ask to be on that list, but I am out of the country with relatives for the winter. Still, I, too, have experienced almost miraculous “healings”, sometimes with the addition of only one thing, that then just as suddenly quit working and I returned to my old state. This is one reason I am hopeful about the vagus nerve stimulatio I still believe the ANS is huge in this and even if it is “symptomatic”, the relief it will bring could give us the leg up we need for our bodies to “re-set”. But this is more hope! Please, keep us posted. love
i wonder about induced comas if this could be a reset and what doctor would perform it? i’d do it.
Hi Susan, I totally get you! I would too. I actually asked my doc in Oregon if he would do that and he blew it off. I think it could be a problem for them with the AMA. but I would do almost anything at this point to sleep and relax again! Still, lmk if you get a response to this.
I don’t understand how Naviaux proposes to treat this (in clinical trials).
He acknowledges that “Treatment of ME/CFS is not a simple matter of “replacing what is low and removing what is high”, but doesn’t really explain how the issues are solved.
Talking about feedback networks is fine, but it is purely hypothetical at this stage – we currently have no clue how these networks work, not even in healthy people or other diseases. This is serious work!
How could you understand? How could any of us? Here’s my experience of Naviaux. I attended a kind of think-tank between him and Ron Davis and his people. From watching that I can at least tell you that Naviaux has these metabolic reactions down part. His knowledge seemed encyclopedic – he was able to easily talk about the ins and outs of any biochemical reaction that was mentioned. It was very impressive.
I grant that this is all new and we should be cautious – we really should. I’m glad, though, that Naviaux is going to put his ideas it appears shortly as he embarks on what I assume are going to be some small clinical trials.
Yes, and some of us are desperate enough to try just about anything. I suspect one of the reasons he does not explain the specifics is because, as he says, it is complex and we all have different profiles. Personally, I’ve hit the wall!
Thanks Cort! It sounds like Naviaux is an extraordinary talent in the field of metabolomics. Thanks for the perspective of how he interacts with others one-on-one in related fields of med research.
For the sake of us humans, I hope the various metabolomic research centers that have sprung up in the last few years produce other med scientists near his capabilities.
Are we interacting with one part of the research of a future Nobel winner? It will be interesting to hear about his group’s pending article on autism metabolomics and to hear how the autism med community reacts over time.
It will indeed. If Naviaux has uncovered what he thinks he’s uncovered with regard to disease in general the skies kind of the limit. We shall see!
Hi! I see there is a lot of interest in the metabolomics work here. Rachel added the link to our non-profit that is collecting funds for the next study up above. wwwgordonmedicalresearch.com
We also have a website that is directly involved with the research, where I see a number of you are signing up to participate. This is great! To get your name on the list, go to http://www.sisoh.com
Our third metabolomics project will be the Analyzing Individual Metabolomics Study (AIMS). We plan to look more closely at individual differences in metabolic response in an attempt to get more specifics on how an individual might be treated.
We are currently collecting names of people who are interested. We will take people from the US, and if we can find a way to have samples shipped, will also include people internationally. We would like as large a group as we can fund for.
This study is being community funded. We hope some will be able to self fund their participation. At this point, every donation will help, no matter how small. If you can spread the word to help with that, it would be much appreciated. We are also working on setting up so individuals can use Crowd Funding sources to help with teh fund raising.
Sign up on the SISOH and/or GMRC websites to receive updates on the research.
Susan Friedl
Gordon Medical Associates
Gordon Medical Research
Science in Service of Humanity
I signed up for the research so when will we know if we’re accepted? I am looking forward to be a part of the puzzle and hopefully answers, thank you so much, Megan Mcdonald
Hi Megan,
Thanks for participating! As you might expect, we have had a lot of sign ups. Asha, our research coordinator for AIMS, will be contacting each person to let them know what to do next. The testing will be divided into groups of patients with similar age, sex, and diagnosis, so not everyone will be tested at the same time, even though they will be part of the same study. You can sign up on the SISOH website under the Research News to receive updates on the research. One was just published yesterday. http://www.sisoh.com/category/news/
To help move the research along, you can also help promote our fundraising at GMRC. Every donation, large or small, helps! http://www.gordonmedicalresearch.com
We are currently putting together resources at some crowdfunding sites to allow the patient community to help in the fundraising. As the AIMS study is community funded, the number of tests we will be able to do depends on our funding.
Susan Friedl
Gordon Medical Associates
Gordon Medical Research Center
Science in Service of Humanity
I’m in San Diego and would love to help as well.
Hi Peter,
The next study is the Analyzing Individual Metabolimics Study (AIMS). http://www.sisoh.com/analyzing-individual-metabolomics-study-aims/
You can sign up to participate at http://www.sisoh.com/participate-in-metabolomics-research-at-sisoh/
Susan Friedl
Gordon Medical Associates
Science in Service of Humanity
Gordon Medical Research Center
Have had the disease since 1988. Although no research completed, I believe a virus condition wiped out my gut and changed the neurotransmitters in my brain. Through experimentation and persistency, I have reached 80 percent recovery but cannot get the last 20 percent. Some good stuff on this website, but most is worthless to true chronic fatigue suffers. My wife suffers from the same problem.
Is there any indication whatsoever what the treatment modalities might be in the treatment trial that is planned?
I believe the drug is called Suramin….How Naviaux fished this one out I don’t know.
https://en.wikipedia.org/wiki/Suramin
Cort, if at all possible I too would love to have my info submitted. I live only 50 miles from San Diego.
Will do 🙂
Hi Maureen,
The next study is the Analyzing Individual Metabolimics Study (AIMS). http://www.sisoh.com/analyzing-individual-metabolomics-study-aims/
You can sign up to participate at http://www.sisoh.com/participate-in-metabolomics-research-at-sisoh/
Susan Friedl
Gordon Medical Associates
Science in Service of Humanity
Gordon Medical Research Center
Great article Cort! I completely agree with Naviaux’s understanding of what is going on in CFS. “The body is actively creating and even defending the low energy state .. to help it outlast a perceived danger”. We are stuck in a kind of physical PTSD. I have remained hopeful all these years (43 since I first got sick) that I could get better because I suspected like Naviaux that there was no permanent damage to my body at a cellular level as in other diseases; and like others I have experienced multiple times a 24-48 complete remission of symptoms when I introduced some completely new modality. However I have also found a number of therapies that have gradually and permanently reversed symptoms and brought functioning back to normal. And like Naviaux says, these were effective for a period of time and then not necessary once I achieved the improvements. There have been many levels of dysfunction to reverse and I am now working on hopefully one of the last ones that has something to do with liver function and the ability for the muscles to recover after exertion.
i feel there is permanent damage in my body. it’s been over 20 years for me too. my skin is starting to sag like i’m 75 and i’m 46. it feels like everything has been compensated and nothing left and i’m deteriorating. i push myself to do things (like life stuff, clean, cook etc.) where i could easily be bed bound. maybe it’s my pushing that creates the drastic aging (and the underlying oxidative stress related). but i cannot stand this cage and have to push!
Cort,
I would be interested in your take on where Dr. Fluge’s and Dr. Naviaux’s ideas differ as in his speech in October (Stockholm) I believe Dr. Fluge stated that he does NOT agree with the “dauer like state” hypothesis.
Cort,
Thank you for synthesizing and sharing this info. I’ve seen Neil Nathan and Robert Naviaux speak and you’re doing a great job tying the concepts together.
In addition to all of the “normal” causes of CFS, the aftermath of chemotherapy was the straw that broke the camel’s back for me.
I’ve read a lot about similarities of cancer-related fatigue and CFS, and my extensive lab work tracks with what Armstrong and Naviaux have found. It’s very clear I’m profoundly ill and I have more than the garden variety cancer related fatigue – I have Rich Vank’s methylation block, crappy genes, related toxicity, and a suppressed immune system with 5 chronic infections.
The cancer world ignores all this and doesn’t know what to do with me… is there any discussion of CFS in post cancer patients, and will any patients like me be included in the studies? I’m on the west coast and would like to be involved if appropriate.
I’d also be very interested in connecting this discussion to Thomas Seyfried’s Cancer as a Metabolic Disease, which discusses familiar topics like immune and mitochondrial dysfunction and preferential use of glycolysis.
Thank you!
vaccines without a doubt has triggered CFS for me starting at the age of 8 w/ MMR and age 11 with Dpt caused fatigue and autism spectrum, then 17 vax in the peace corps in 96 in one month completely pushed me over into no return. i’ve never been the same since. CFS and autism are very similar biochemically and even Wakefield said when asked “why don’t we see autism in adults (onset)” he said, “you do, it’s CFS”. I wish scientists would study this link so they know how to reverse vaccine injury. So much of it sets us up too to be pushed over the edge later by a virus or trauma (the straw) after vax injury has occurred.
Hi Cort and Rachel:
Crossing my fingers for helpful results from this study. I don’t agree with the dauer angle as I think Vascular EDS patients are also ME patients but haven’t been studied as such and their bodies certainly are not being self-protected in any way – they die an early death. I’ve been talking to them on other forums and it’s brutal. They’re doctors certainly believe they have physical problems, but they’re getting patched up and sent out the door, often diagnosed with vascular EDS AFTER landing in the hospital if they receive a diagnosis at all it seems.
So many comments – I’ll try to keep mine brief. I can’t help but notice so many studies have been conducted focusing on patients who feel they first came down with ME from infections/viruses. Has Dr. Naviaux ever explored organophosphate poisoning as a cause of faulty “signalling” (neurotransmitter) activity? Malathion has been found to be teratogenic. I was exposed to it as a fetus in an intense farming region here in Ontario, Canada. A significant number of my peers were born with club feet or stillborn. Malathion’s effect on acetylcholinesterase activity: https://www.ncbi.nlm.nih.gov/pubmed/16782587 The vagus nerve produces acetylcholine and other neurotransmitters. Malathion can also affect lysly hydroxylase in collagen, hence the clubfeet. Which is also Ehlers Danlos Syndrome.
It seems whenever there’s an outbreak of virus/infections, Public Health is quick to investigate and publish results and come up with vaccines/meds. Whenever groups band together to say they’ve been harmed by organophosphates, it’s debated in Parliament, denied, then forgotten. That happened in my case, as well as a CFS/ME group in Scotland who were exposed to sheep dip. And a group of airline workers exposed to organophosphates in airline cabins. We slather DDT on our bodies to ward off mosquitos, fumigate our houses with organophosphates, it’s on golf courses, we put it on kids heads to treat lice, it’s all over. (I’m saying “we” in the vague sense, chemicals make me violently ill now.)
Cort, do you know of any researchers looking at this angle or any who ever have?
Other than propolis, what else can be done to detox from this. I have EDS and was born with a slight club foot. I played in the fog of mosquitoe spray and rolled in grass as a child after the spray. Was coated in DEET as I lived in the South and the mosquitoes would be terrible.
Issie
I saw Robert Naviaux speak at the United Mitochondrial Disease Foundation conference this summer. He gave his talk in Cell Danger Response. The talk after his was by Kendall Wallace at U Minn discussing work done to test pharmaceuticals and other toxins on their ability to damage mitochondria.
Dr. Naviaux popped up when his speech was done and gave an impassioned plea to the 300 doctors in the room that the increasing toxicity was awful for mitochondria, and challenging the doctors to become activists in reducing the general public’s toxic exposure.
It was very heartening to see…
I imagine. Thanks for passing that on.
I so wish that that talk had been recorded. UMDF often does this and uploads it to the Vimeo website. Alas!
Hmm… I thought it was being recorded at the time. It was one of the clinician track presentations and not the family track.I just looked on their website, but cannot find a link.
He shared how he got into what he does, his work with autism, and the CDR paper, all with anecdotes.
Maybe you can contact UMDF for a copy. It was very good.
I don’t but I can’t imagine that they don’t contribute. Go to farm country, in particular, and I’ll bet you’ll find a bunch of people who’s ME/CFS was triggered by these substances.
Found it – Here’s a study discussing how malathion can cause immune systems to go off as well as cause other body abnormalities: https://www.ncbi.nlm.nih.gov/pubmed/24480596
I just don’t get why researchers don’t all look at this angle unless it’s political – the gov’t won’t provide funding for it. I do know that the NIH would only give funding for research into the harms of cannabis for many decades, and refuse to fund studies which would look into its benefits. That was so governments could say cannabis is harmful and no scientific benefit has been found. I’m well acquainted with the law prof who spearheaded the cannabis legal challenges here in Canada, this is one of rants re NIH funding and Canada following along: (about 19:15 I think) http://www.ideacity.ca/video/alan-young-defending-pot/
“Naviaux doesn’t believe that the kind of structural damage that occurs in say, multiple sclerosis, has occurred in most cases of chronic fatigue syndrome. Nor has any intrinsic damage occurred to the mitochondria of most people with ME/CFS – a good thing.”
Tell that to the patients whose brains are littered with UBOs. Has he ever even looked at the tissue from a real ME patient? Because the people that actually did have found structural changes, inflammatory damage, and mitochondrial damage, in brain, CNS, and muscle tissue. This is the problem with researchers from other fields dipping their toes in the field of ME research, they seem completely unaware of the existing evidence base.
Finally able to circle back to this. Great work as always, Cort!
On a mundane note, I can’t download or print the PDF. Any pointers or a fix?
Thank you for all you do, Cort. Good luck with the year end fund push too.