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Author Topic: New study: Metabolic features of chronic fatigue syndrome  (Read 11480 times)
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agapanthus
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« on: August 29, 2016, 09:46:13 PM »

http://www.pnas.org/content/early/2016/08/24/1607571113.long


Significance

Chronic fatigue syndrome is a multisystem disease that causes long-term pain and disability. It is difficult to diagnose because of its protean symptoms and the lack of a diagnostic laboratory test. We report that targeted, broad-spectrum metabolomics of plasma not only revealed a characteristic chemical signature but also revealed an unexpected underlying biology. Metabolomics showed that chronic fatigue syndrome is a highly concerted hypometabolic response to environmental stress that traces to mitochondria and was similar to the classically studied developmental state of dauer. This discovery opens a fresh path for the rational development of new therapeutics and identifies metabolomics as a powerful tool to identify the chemical differences that contribute to health and disease.

(this is just a small part above - see link for further details)
It's also in the Mail if you can bear their version which has an irrelevant quote from a psychiatrist (presumably the only 'researcher' they could find in the UK).

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roger
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« Reply #1 on: August 30, 2016, 05:44:06 AM »

Thanks for this, Aggie - good old mitochondria, eh. Maybe they should just have asked Sarah Myhill what the problem was!
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agapanthus
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« Reply #2 on: August 30, 2016, 07:27:16 AM »

Yes, Roger it certainly aligns with Dr Myhill's theories, but goes further as far as I can understand (which isn't much) and could hold a way of testing to diagnose too. Of course, it has to be reproduced by others first.

Incidentally the Editor of this PNAS study is Ronald W Davis - he is the father of Whitney Dafoe who has a very severe form of ME ..... see this piece for info about Ron and Dafoe's story http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html

Conclusions

CFS has a chemical signature that can be identified using targeted plasma metabolomics. Receiver operator characteristic (ROC) curve analysis showed a diagnostic accuracy that exceeded 90%. The pattern and directionality of these changes showed that CFS is a conserved, hypometabolic response to environmental stress similar to dauer (35). Only about 25% of the metabolite disturbances found in each person were needed for the diagnosis of CFS. About 75% of the metabolite abnormalities were unique to the individual and useful in guiding personalized treatment. The study of larger cohorts from diverse geographical areas, and comparison with related medical disorders like depression and posttraumatic stress disorder, will be needed to validate the universality and specificity of these findings. The finding of an objective chemical signature in CFS helps to remove diagnostic uncertainty, will help clinicians monitor individualized responses to treatment, and will facilitate multicenter clinical trials.

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roger
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« Reply #3 on: August 30, 2016, 08:37:56 AM »

Well it'll certainly be interesting to see how things develop.
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agapanthus
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« Reply #4 on: August 30, 2016, 08:47:49 AM »

I am reading the discussion on it on Phoenix Rising where there are some scientists who have a better take on it than I do. They are very excited by this study. 'Dauer' incidentally means (German I think?) a kind of hibernation state.
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roger
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« Reply #5 on: August 30, 2016, 09:00:42 AM »

Sorry if I'm sounding a bit unenthusiastic, but the truth is that if developments resulted in drug treatments, which they probably would, I wouldn't take them.
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agapanthus
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« Reply #6 on: August 30, 2016, 09:17:26 AM »

No I understand that, but it sounds as if some of what is being suggested already is what you are already doing, though they might be able to pin point the nutrition better of course, especially if a genetic approach can be individualised.
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roger
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« Reply #7 on: August 30, 2016, 09:42:48 AM »

unless we're talking, epigenetics, the words 'genetic approach' frightens me to death.
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agapanthus
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« Reply #8 on: August 30, 2016, 09:54:12 AM »

I've no idea - the 'genome' I think is what I am referring to. The fact that we are individuals genetically and therefore there is not a blanket approach to treatment.
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roger
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« Reply #9 on: August 30, 2016, 10:23:46 AM »

So many 'scientists' are now talking about messing with our genes, and it's that which I'd have no cotter with.
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agapanthus
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« Reply #10 on: August 30, 2016, 03:46:47 PM »

So tired today and need to read more later when I have rested (I am SO excited by this new research.... on the day I write to my GP and ask for a test re Fatty Acid Disorder it turns out that the research shows differences in men and women and women show......generally disturbed fatty acid!!!

Anyway this Q & A is available so might throw more light on things....see Q5 re epigenetics
http://naviauxlab.ucsd.edu/wp-content/uploads/2016/08/Metabolomics-QA-for-CFS.pdf
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roger
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« Reply #11 on: August 30, 2016, 04:04:51 PM »

I’ve been sceptical about ‘exciting new research’ that many were excited about in the past, Aggie. And I’m sceptical about this, too. Not so much the research, which makes good sense to me, having been educated by Sarah Myhill, but what Big Pharma will come up with as a treatment. D’you have any idea who’s funding this? And that’s not a trick question, I’m just interested to know.

Whatever, I do truly hope that this does prove workable and that a healthy treatment that works is found for the hundreds of thousands of people with ME/CFS.
« Last Edit: August 30, 2016, 04:21:31 PM by roger » Logged

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« Reply #12 on: August 30, 2016, 04:56:33 PM »

I'm with roger on this one. It is interesting but I am waiting to see if they come up with any 'treatments' based on a drug.
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roger
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« Reply #13 on: August 30, 2016, 05:45:57 PM »

Sorry, Anne, but I've not explained myself well, and I apologise for that. The last thing I'd want if I still needed a treatment would be a drug. Why? Because they'll NEVER produce a drug that's actually curative. Why? Because there's no money in drugs that cure. That's why there aren't any, at least none that I know of.
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« Reply #14 on: August 30, 2016, 06:34:08 PM »

That's true....the only drugs I can tho of that CURE are anti biotics
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roger
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« Reply #15 on: August 30, 2016, 07:01:33 PM »

But bacteria are a symptom that the immune system isn't working properly, not a disease. Even Alexander Fleming, shortly before he died, stated that bacteria aren't the problem, the terrain is. So I'm not letting antibiotics off the hook! Though I do accept that they are useful on occasion while you're getting to the bottom of WHY you have a bacterial infection.
« Last Edit: August 30, 2016, 07:07:32 PM by roger » Logged

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agapanthus
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« Reply #16 on: August 30, 2016, 07:35:55 PM »

Roger -  Funding for this research came, in part, from the UC San Diego Christini Fund, The Wright Family Foundation, The Lennox Foundation, the It Takes Guts Foundation, the UC San Diego Mitochondrial Disease Research Fund and gifts from Tom Eames and Tonye Marie Castenada.

I don't know where the other parts came from though!

'The Naviaux Lab is focused on the study of mitochondria, and their role in energy production, metabolism, and cellular defense. As part of the Mitochondrial and Metabolic Disease Center at UCSD, the lab has helped hundreds of patients with mitochondrial and metabolic concerns over the last 20 years. We have recently published a study utilizing our unique approach in the study of chronic fatigue syndrome with exciting results.'
ABOUT DR NAVIAUX:

Dr. Naviaux is Professor of Medicine, Pediatrics, and Pathology at the University of California, San Diego (UCSD). He is the founder and co-director of the Mitochondrial and Metabolic Disease Center and former President of the Mitochondrial Medicine Society (MMS).
« Last Edit: August 30, 2016, 07:38:59 PM by agapanthus » Logged

roger
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« Reply #17 on: August 31, 2016, 06:02:47 AM »

Thanks for that, Aggie, and it'd be interesting to know if any of the mentioned have Pharma connections - hiding behind impressive sounding organisations is what Pharma do. Though I'm not saying this is the case here, because I don't know, and the research to find out is like doing a ten thousand piece jigsaw. And, certainly, it's not ALWAYS the case, just usually.

Whatever, this research might have positive outcomes - you never know - and I hope it does.
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« Reply #18 on: August 31, 2016, 12:59:59 PM »

Thanks for posting this Aggie.  A bit more energy today so browsing through recent posts.  It does sound promising.



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Anne56
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« Reply #19 on: August 31, 2016, 06:34:04 PM »

Roger - I completely agree. It's all about money unfortunately.  38
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roger
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« Reply #20 on: September 01, 2016, 05:40:42 AM »

There's an old saying, Anne, when things don't make sense - 'follow the money' - and that certainly applies in the medical industry. There's something I've said many times before but feel I should say again - it's not the fault of the front line people, most of them are trying to do a good job. It's the 'system' that's the problem.
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agapanthus
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« Reply #21 on: September 01, 2016, 06:56:26 AM »

If you haven't read about Ron Davis' son Whitney Dafoe already it's worth reading this piece. Ron Davis edited this research, but I understand that he's involved in the follow up research. Whitney has a very severe form of ME so Ron has personal reasons for being involved, to try and save Whitney's life.

http://stanmed.stanford.edu/2016spring/the-puzzle-solver.html

The puzzle solver
A researcher changes course to help his son
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agapanthus
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« Reply #22 on: September 01, 2016, 12:02:06 PM »

Oh and Ron Davis himself is only funded by donations at the moment. I think he got turned down for a Govt grant recently but maybe this new research will improve his chances. I don't know how things work in the U.S. re such stuff.
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roger
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« Reply #23 on: September 01, 2016, 12:36:47 PM »

To my mind, Aggie, it's the fact that he's working with only donations that makes him impressive.

I have no doubt that true CFS/ME is a mitochondria issue, so I have no doubt that he's on the right track, and I wish him all the luck in the world - breakthroughs usually require some luck.

The story got me thinking back to eight or ten years ago because, although I was never as bad as Whitney, it brought back unpleasant memories. The thinking brought me back to the present. I don't believe I have CFS now, and it wasn't science that got rid of it. I think my driving force was a determination to prove the doctor's wrong, followed by a huge amount of trial and error!
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agapanthus
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« Reply #24 on: September 01, 2016, 12:57:54 PM »

Interesting, Roger. I didn't know that you believed that your CFS had gone entirely.

I remember you had an issue with being unable to walk far or do much exercise. Do you still have that? To me, that is all that I am left with most of the time, (lack of stamina) but I believe that this IS part of the CFS/ME stuff still affecting the mitochondria. I know you have to take age into the equation, but I do know of others of my age who can do a whole lot more, and I usually run out of steam by the evening and rarely go out then.

Yes, I think the ME/CFS issues are to do with the mitochondria, but there's a whole lot more to it also as we are all different in the way the illness displays itself.
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