Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Metabolic profiling of me/cfs cohort reveals disturbances in fatty acid & lipid metabolism

Discussion in 'Latest ME/CFS Research' started by Kati, Dec 23, 2016.

  1. Kati

    Kati Patient in training

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    Metabolic profiling of a myalgic encephalomyelitis/chronic fatigue syndrome discovery cohort reveals disturbances in fatty acid and lipid metabolism
    Arnaud Germain, David Ruppert, Susan M Levine and Maureen R Hanson

    Abstract:

    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) remains a continuum spectrum disease without biomarkers or simple objective tests, and therefore relies on a diagnosis from a set of symptoms to link the assortment of brain and body disorders to ME/CFS.

    Although recent studies show various affected pathways, the underlying basis of ME/CFS has yet to be established.

    In this pilot study, we compare plasma metabolic signatures in a discovery cohort, 17 patients and 15 matched controls, and explore potential metabolic perturbations as the aftermath of the complex interactions between genes, transcripts and proteins.

    This approach to examine the complex array of symptoms and underlying foundation of ME/CFS revealed 74 differentially accumulating metabolites, out of 361 (P<0.05), and 35 significantly altered after statistical correction (Q<0.15).

    The latter list includes several essential energy-related compounds which could theoretically be linked to the general lack of energy observed in ME/CFS patients.

    Pathway analysis points to a few pathways with high impact and therefore potential disturbances in patients, mainly taurine metabolism and glycerophospholipid metabolism, combined with primary bile acid metabolism, as well as glyoxylate and dicarboxylate metabolism and a few other pathways, all involved broadly in fatty acid metabolism.

    Purines, including ADP and ATP, pyrimidines and several amino acid metabolic pathways were found to be significantly disturbed.

    Finally, glucose and oxaloacetate were two main metabolites affected that have a major effect on sugar and energy levels. Our work provides a prospective path for diagnosis and understanding of underlying mechanisms of ME/CFS.

    My comment: with this string of highly significant and high quality papers on metabolomics, we are witnessing a new era just being born, making the psych lobby irrelevant and rather embarrassing themselves with their theories of false illness beliefs, catastrophization and all of their psychobabble. Merry Christmas everyone!
     
    Last edited: Dec 23, 2016
    J.G, medfeb, Hutan and 35 others like this.
  2. Horizon

    Horizon Senior Member

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    Would fatty acids from fish oil help in this regard? Is there anything we can supplement to try to see if it helps make up the potential deficit?
     
  3. Kati

    Kati Patient in training

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    Hi @Horizon, for the past 30 years, many if not the majority of patients have tried supplementing or changing diets and they are still sick and stuck with this disease.

    The truth is there are no quick and easy fixes or we'd know already. More research is needed to find out cause (what causes the abnormalities and why) m what are the subsets, what are the most promising treatments and to try these in randomized clinical trials. This has been the way science have worked and it is our best chances to find solace.

    Your comment on fish oil reminds me of folks saying that high dose vitamin C is a cure for cancer. If it truly was, you know, no one would die from cancer and all oncologists would be out of a job. There are no quick fixes.
     
    ukxmrv, merylg, MEMum and 13 others like this.
  4. JaimeS

    JaimeS Senior Member

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  5. JaimeS

    JaimeS Senior Member

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    There are no quick fixes, but there are small QOL gains to be made. Diet would be a big deal if Fluge and Mella's findings are correct. It wouldn't be a cure or anything, but presuming they're right it would be helpful to get most of your calories from fats and proteins.

    (For women: especially proteins!)
     
    Laurie P likes this.
  6. Rick Sanchez

    Rick Sanchez

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    Can not agree with this more.

    Personally I have tried every diet under the sun. Including a protein rich one where I ate 1kg of meat every day. None of them have helped at all in the long run...
     
    merylg, MEMum, justy and 3 others like this.
  7. Kati

    Kati Patient in training

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    I do not believe this is a nutritional problem. I really wish people would not be so fixated on the food as being the culprit and as being the solution. Same as in cancer, suddenly with a cancer diagnosis people start diverse diets as if it would stop the cancer. It does not stop the cancer.

    If food is not the problem, why stressing out about it (and stress out everybody else around you) ?
     
  8. JaimeS

    JaimeS Senior Member

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    I don't believe it's a nutritional problem, but that some diets might work out better than others for those who have the illness. I saw on the other thread your personal experience with Atkins, and it wasn't for you, @Kati. However, it really really did help me, and several others I know. When I eat carbs, I feel distinctly worse. When I omit them, I feel distinctly better. It's not curing me, but it's QOL, and to me, it matters.

    What helps one person may not help another. I accept that individual variability in this extremely heterogeneous illness.

    Moreover, at least for me, I haven't found the "one thing" that has cured me, or even vastly improved my circumstances; rather, it's a combination of small gains that I have noticed from multiple, low-impact interventions that have together yielded significant progress. Diet is one small piece of the puzzle for me.

    I am not concerned about stressing others for any intervention I use. I am concerned about improving my life. Also, my symptoms are much more stressful than the dietary tweaks that decrease their impact.
     
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  9. Kati

    Kati Patient in training

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    Thx @JaimeS.

    Before getting sick, I was a runner, hiker and long distance cyclist. I raced bikes for 2 seasons and i was also a rower ( in my teens). i climbed the mountains in the french Alps, with all my gear on the bike. i loved it. My anaerobic threshold about 10 years ago was 146. (Sick 8 years ago) Carbs and complex sugars were an essential part of my life. Somehow, something snapped, but I have always been high carb (mostly veggies,some pasta and rice) , normal protein, low fat kind of girl. But it doesn't matter, does it.

    What matters is that something snapped and I want it back. Prior experiences, and professional experience have thaught me that the food is not the problem, nor it is the solution. I am not after the 1% here, or there, which may well prove to be helpful, but possibly also powered by suggestion and placebo effect. I am willing to be wrong on that, but quite honestly I would prefer there be placebo controlled trials for that. Science must decide.

    What is needed is 30-50-100% improvement. Biomarkers. Accurate diagnosis. Treatments. I want my life back.

    Best.
     
    Last edited: Dec 23, 2016
    Hutan, HowToEscape?, merylg and 10 others like this.
  10. roller

    roller wiggle jiggle

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    ... and then there comes the point when you think "I want to survive this" ...

    this disease is not for the faint-hearted.
    only the brave man will look through ;)

    merry christmas everyone!
    stay alive.
     
    merylg, Manganus, Mel9 and 1 other person like this.
  11. Kati

    Kati Patient in training

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    Yeah @roller. We're getting there. i am sure there is much more to come.
     
  12. JaimeS

    JaimeS Senior Member

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    Come on, now. It's not 1% or I wouldn't bother. Diet for me is about 20%.

    It's just different for you versus me. And that's okay.
     
    MEMum, Blue and AndyPR like this.
  13. Cheesus

    Cheesus Senior Member

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    Might abnormalities in the fatty acid profile cause elevated liver enzymes? My understanding is that fatty acids are related to the liver (such insight, I know). The abnormalities in biliary fatty acid metabolism are what reminded me. I had idiopathic elevated liver enzymes for a long time,
     
    ryan31337 likes this.
  14. ryan31337

    ryan31337 Senior Member

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    As someone with elevated ALT I'd be interested in that too @Cheesus.

    My endo put me on Atkins for reactive hypoglycemia and remarked that he wondered if my elevated liver enzymes were a result of NAFLD and hoped that they would reduce on a keto diet. Low and behold they are practically back to within normal range now after 3 months on the diet.

    Incidentally I agree with @JaimeS, personally my blood sugar regulation was shot and the keto diet made an enormous difference. I'm not sure how to put a percentage on it but before my limits were 1hr at a desk before crashing, needing to sleep 3 times a day. On keto there's no need to sleep and no energy crashes at all - the only problem is PEM/POTS/MCAS.

    If you consider that the hypos were probably aggravating POTS and the POTS was triggering MCA and the MCA was further aggravating POTS... you can see how one seemingly unrelated & 'small' change can really make a difference for some patients.
     
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  15. JaimeS

    JaimeS Senior Member

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    My mama did too. However, EBV was her initial insult, and EBV is known to cause liver failure when it's severe enough. However, I've still bounced back and forth between thinking that perhaps it's metabolic instead -- or as well.

    @ryan31337 -- probably what I do now best falls into 'paleo', broadly... but food sensitivities complicate. :p
     
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  16. adreno

    adreno Senior Member

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    This doesn't sound like a ketogenic, high fat diet is needed. On the contrary. We can't digest fats or convert them to energy.
     
    J.G likes this.
  17. HowToEscape?

    HowToEscape? Senior Member

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    And they imply we're a bunch of fat sluggish depressives...
     
  18. Kati

    Kati Patient in training

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    Unfortunately for me, I actually gained 100+ pounds in the time surrounding my illness onset. It's not that I was not eating healthy. I think it was a combination of inactivity, the disease itself, and the consequences of the emotional roller coaster I have been in. It is difficult to accept, and I still want to bike, run, hike and get my life back.

    I say unfortunately because what I project when I meet a new doctor is this overweight and somehow depressed and desperate looking person. They would have a hard time thinking I was racing bikes just 10 years ago.

    Interestingly, with the recent metabolic papers that have emerged in the last month or so, many people here think that by eating more they will have more energy. It doesn't work that way.
     
    mango likes this.
  19. lnester7

    lnester7 Seven

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    Funny you say that, I think this is truth for me, if I do not limit my eating I get more energy (this is a me thing).
    I should eat around 1500. but I am miserable weak at this amount. So I overeat and feel better.
     
    NexusOwl likes this.
  20. Kati

    Kati Patient in training

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    Personally when I restrict my calories, I go through a hunger phase, which is not comfortable, especially when going through so much hardship with the illness. That hunger phase lasts 1-2 weeks and then your body gets used to it and then it is encouraging to shed pounds after pounds. I Used to be able to eat 1200 calories, and have successfully lost 48 lbs this way. Right now, I do not have as much will power. And my kitchen scale broke. :bang-head:

    Unfortunately, food is comfort.
     

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