Thanks. Interesting that on my last road trip, we were enroute with a guy in a very cool Pruvit truck. Being interested in learning, I told my hubby if we stopped with him I was going to talk to him and try to learn about it. We, a few hours later, stopped at the same gas station. I did talk to the guy and had a lengthy conversation and he gave me an KetoOS sample. WE have been exchanging emails and I'm learning. However, the MCT powder has milk proteins and corn and soy in it. I can't use any of that and reacted to the powder. From what I read most MCT powder is this way. It did however give me energy.
I appreciated the highlights....makes it easier to gleen the meanings.MEAction::
"Naviaux’s study in a nutshell states that the cells of ME patients are in a sort of protective hibernation"
Q&A with Dr. Naviaux:
"I wouldn’t use the term hibernation to describe chronic fatigue syndrome. Humans do not hibernate. Hibernation is just one of a handful of hypometabolic states that has been studied in different animals. There are many others that go by names like dauer, diapause, torpor, estivation, caloric restriction, etc. Many environmental stresses will trigger hypometabolism in humans. In our experience, the metabolic signature of dauer is more similar to CFS than some of the other hypometabolic states that have been studied."
"Now, scientists have shown people with symptoms of the condition have a specific chemical signature in their blood."
"Lead researcher Robert Naviaux said something similar happens when animals dial down their metabolism to hibernate.
And that in CFS, the body may get stuck in this state, leading to chronic pain and disability."
"New research has revealed a chemical signature of the disease in the blood of those with ME. Scientists from the University of California claim it is similar to a state found in nematode worms called dauer, where the metabolism adjusts to a difficult environment by slowing down."
"This hibernation state enables existence, but not much more. ""
"...identify and assess targeted metabolites in blood plasma, have identified a characteristic chemical signature for the debilitating ailment and an unexpected underlying biology: It is similar to the state of dauer, and other hypometabolic syndromes like caloric restriction, diapause and hibernation."
KetoCaNa is lactose and gluten free...it's not MCT but the calcium and sodium betahydroxybutyrate salts.Thanks. Interesting that on my last road trip, we were enroute with a guy in a very cool Pruvit truck. Being interested in learning, I told my hubby if we stopped with him I was going to talk to him and try to learn about it. We, a few hours later, stopped at the same gas station. I did talk to the guy and had a lengthy conversation and he gave me an KetoOS sample. WE have been exchanging emails and I'm learning. However, the MCT powder has milk proteins and corn and soy in it. I can't use any of that and reacted to the powder. From what I read most MCT powder is this way. It did however give me energy.
I had tried Butyrate already. It severely upsets my intestines. I only used a half bottle of it. Not sure why, unless there is some sort of milk protein associated with that too. I found a clean and cheaper source than the ones mentioned in that article.
I really like Damien blogs.
I'm not to use calcium. I saw one from a potassium source though. The one I tried is a potassium source, yet I still reacted. It also smells like rotten eggs. Horrible.KetoCaNa is lactose and gluten free...it's not MCT but the calcium and sodium betahydroxybutyrate salts.
Wait, so was he (partly) baiting media interest with a catchy sounding concept? I initially thought you meant that he processed despite dreading misunderstanding. Seems to me that many/most other CFSers reading of the study via these articles are indeed coming away with the impression of a fuzzy-animal-type of 'hibernation' (jokingly or otherwise). Anyway...Naviaux I think felt the media would jump on the hibernation idea and they have!
Ooh. I think I might also have caught that New Scientist article too (about squirrel brain adenosine receptor stimulation putting them (back) into hibernation). I certainly looked up adenosine after this other 2010 New Scientist article on how adenosine in the brain builds sleep pressure (and astrocytes appear to be the source). Anyway, that's quite a lot of interesting information! The years of expertise on here are quite intimidating, so please excuse me noobing in with my half arsed thinking now...I wrote about adenosine inducing a hibernation like syndrome a couple of years ago.
In many ways lowered adenosine, or lowered rate of production makes more sense here. One of our biggest certainties is mitochondria under-performing (either damaged, missing or inactivated). And if the primary source of adenosine accumulation is from our (diminished) "turnover (flux) of ATP and GTP" (Naviaux), then sleepiness inducing adenosine accumulation could well be muted and slowed, in line.I thoughts most cfsers were tired but wired which doesnt make sense to me.
I know that Whittemore has met with Ron Davis and supports his work. I hope we can find a way to get a big metabolomics grant on ME/CFS. Maureen Hanson recently stated that she is going to try and get one. Stay tuned for some news on testing for metabolomicsI’ve only looked briefly at this but they report “diagnostic accuracies of 94% [95% confidence interval (CI), 84–100%] in males using eight metabolites and 96% (95% CI, 86–100%) in females using 13 metabolites”.
My understanding is that this is deliverable since the base cost is roughly £200 (US$230) per test – further detail below.
In terms of delivery, existing Government resources could be directed to confirming this test/testing samples from patients. Your Government currently uses this technique to test for antibiotics etc in food; so currently you rank behind chicken etc in their priorities.
I’m hoping that Vicky Whittemore [National Institutes of Health/National Institute of Neurological Disorders and Stroke] will fund a larger study to help to test this on a larger population. Also, fund research into what is turning on the switch [e.g. a dodgy sensor or an underlying infection] and how to address same. My confidence in the United Kingdom Government (who recently “contributed” PACE) and the European Union (who admittedly aren’t linked to PACE) is so low that my first call would be to Vicky. Please try to influence your Government including the UK/EU; however, my experience re UK/EU has not to date been positive.
Oh and well done to all involved. Not the simple answer I was hoping for i.e. here’s how you tell that you’ve got this and here’s how to correct it; but (on the face of it) a potential answer to the former and a step towards the latter.
Finally, ask your local politician (AKA “they work for you”!), including UK "PACE"/EU to deliver on this.
I’ve repeated this ad nauseam but the Government laboratories here in Northern Ireland get roughly £200 ($265 US) per LC-MS test i.e. for statutory food European Union residue testing (antibiotics etc). The technique used here i.e. metabolomics is a variation (of LC-MS/MS) which is more sensitive and as such is presumably more expensive (but presumably in the same ball park – perhaps twice the price per test).
In terms of capital cost, in relation to the Government laboratories here in Northern Ireland, I’ve previously seen figures in the region of £250,000 for an LC-MS/MS. I assume that these metabolomics instruments are in the same ball park possibly £400,000 ($530,000 US). At a very basic level my understanding is that they are an LC-MS/MS with a bit of fancy software i.e. to interpret the data collected (signal).
So testing of using this method (LC-MS/MS) is currently carried out by Government laboratories in Northern Ireland [(AFBI) - £200 ($265 US) per LC-MS test]; England, Scotland and Wales [Fera Science Limited], every other EU country and every significant food exporter (e.g. USA).