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New study hints at biological roots of mental and physical problems in ME/CFS

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jan 21, 2013.

  1. alex3619

    alex3619 Senior Member

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    Les Simpson's work was largely about RBC flexibility iirc. The membranes were stiff and not able to flex to get through small capillaries easily. This would stuff up microcirculation, but not be obvious in major blood vessels.
    merylg likes this.
  2. Old Salt

    Old Salt Rowing the boat

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    How does this explain Cluster Outbreaks and spouse to spouse transfer?
    I still say the answers are in the gut!
  3. Nielk

    Nielk

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    Thank you Simon for this.
    I would assume that this finding is just one piece of the large puzzle. Nevertheless, any piece found, gets us that much closer to the mystery solved.
    merylg and Simon like this.
  4. K2 for Hope

    K2 for Hope ALways Hoping

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    Simon,

    I thank you for posting the article and explaining it in "laymen's" terms as much as possible as well as posting the original publications so that those who can understand it can read it.

    Whenever I go to the actual publications, I cannot mentally get past the "abstract" much less remember what I just read. (Hmmm... maybe I should be laying down when I read...)

    And, thanks to the many comments that dissect the research. Although, I am still waiting for the one article that says "CURE FOR ME/CFS HAS BEEN FOUND!" (not holding my breath), I am still fascinated that there are researchers, Dr's, scientists and others who are working on finding the clues to the puzzle. And I am very pleased to know there are people like Julia Newton still looking for correlations even if they are not causations.

    To me, any research is worth noting so ME/CFS patients don't feel like this illness is completely being ignored.
  5. Nancy Blake

    Nancy Blake

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    I want to comment on the article: Les Simpson ('Blood Viscosity Factors - the Missing Dimension In Modern Medicine', 'Ramsay's Disease - ME (Myalgic Encephalomyelitis and the Unfortunate Creation of CFS', and contribution to 'A Beginner's Guide to ME/CFS' has done years of research on the way that non-deformable erythrocytes are responsible for the symptoms in muscles, cognition, and endocrine regulation in ME - For some reason his work has up to now been bypassed by the ME research community, although several are familiar with his work. It seems that some fruitful synergy could be created here, and it is very good news that this new work is being done!

    Nancy Blake
    merylg likes this.
  6. MishMash

    MishMash *****

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    Alex,
    I seem recall some of the patients had the following. Don't know if it was in line Simpson's research. My group's patients had other variations in blood shapes too, i can't recall them:

    Anisocytosis

    merylg and alex3619 like this.
  7. beaverfury

    beaverfury beaverfury

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    I got the opportunity to look at my blood cells under the microscope. They were very ugly.
    Mishapen, stuck together, and bits of debri between cells. I was ashamed of them.

    I am 42 and considered myself quite fit and in good health before falling to the invisible peril.

    They attributed b12 deficiency to some of the mishapen cells.
    taniaaust1, jimells and Crux like this.
  8. Enid

    Enid Senior Member

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    Just realised the heading refers to "mental problems" - just never had - a jump ahead of those around me when slow as I was could point out a water leak to those around me who failed to notice or grasp the implications. Cognitive problems ......slow processing of information only. Intelligence is unimpaired.
    merylg likes this.
  9. Simon

    Simon

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    Hi Research 1st

    Interesting paper on CFS vs erythrocyte metabolism/shape. I just checked the full text, and turns outit too uses Fudkuda, ie the same criteria as the Julia Newton study I've written about here - PEM not mandatory:
    I'm not wild about the Fukuda criteria but they are very widely used and I'm not inclined to dismiss all research out of hand because of using Fukuda. Personally, what I would most like to see is some validated criteria developed i.e. taking a large group of patients diagnosed by a range of criteria and looking at clustering of symptom and biological data. From what I can tell, this is very much what is being planned by the Open Medicine Institute.

    The erythrocyte paper concludes:
    Not sure this was ever published? Pity.
  10. Simon

    Simon

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    Ah, probably should have said cognitive! Changed from mental fatigue, as that wasn't strictly accurate but maybe went out of the frying pan into the fire.
  11. MishMash

    MishMash *****

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    Important comments made years ago by Dr. Simpson about abnormally shaped RBCs, hyper-viscous blood in ME patients, and also slowed cerebral blood flow. According to Dr. Newton, there is some kind of impaired blood circulation. The question is why?


    merylg, Jenny and alex3619 like this.
  12. Lotus97

    Lotus97 Senior Member

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    I've read about decreased blood flow to the brain before, but I was wondering if I take supplements that increase blood flow to the brain such as Ginkgo Biloba, Vinpocetine, Resveratrol, Grape Seed Extract, Pterostilbene, etc. would that increase the chance of mercury reaching the brain if a person was mercury toxic? I've avoided these supplements since recent troubles with an amalgam, but I'm wondering if I'm being overly cautious.
  13. jimells

    jimells Senior Member

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    Hi Research 1st, thanks for this, very interesting.

    I had the 'Live Blood Analysis' a number of years ago. I, too, had many misshapen RBCs. The 'cure' was to eat more protein. Not very helpful, but it was fascinating to see the little buggers on the microscope video monitor. I also have chronic inflammation, but no knows exactly where or why, and they have no interest in finding out.

    The mention of oxidative stress make me think of Martin Pall's work on nitric oxide, the "NO/ONOO" stuff, or something like that, and Rich Van K's methylation theories.
  14. ukxmrv

    ukxmrv Senior Member

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    Lotus, when these findings came out people with ME and CFS started experimenting with supplements that are said to have these properties in a big way. It was a big topic of discussion. Can't say that anyone reported any worthwhile success with these things at the time. No idea about mercury.

    p.s. Dr Simpson suggested fish oils, evening primrose oil and Pentoxifylline at the time. I didn't get a chance to try the Pentoxifylline.

    p.p.s. someone has been in contact with Dr Simpson and made him aware of the new research. He is 89 but still replies to emails.
  15. Lotus97

    Lotus97 Senior Member

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    I found Ginkgo and Vinpocetine to be good for brain fog (although some people have had problems with Vinpocetine) and Resveratrol is good for inflammation. I've also heard good things about Grape Seed Extract and Pterostilbene. They might not solve the problem or even make a huge difference, but I think they're worth trying.
  16. ukxmrv

    ukxmrv Senior Member

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    Lotus, the problem is that for many of us we have been trying since the research first came out. For some of use we met Dr Simpson and have been trying ever since then. Been over 20 years since I met him.

    It's an area that needs better research and not just into the causes but also treatments. Spending hundreds of pounds each year on supplements that make little difference over a very long period of time is a severe finanacial drain. "tryng" isn't possible to do for decades unless one is has an income.

    Not only can my finances afford to do this but my stomach packed up in 2005 and I simply cannot digest all the supplements I was swallowing.
    merylg and MishMash like this.
  17. ph abnormality resonates here...for decades I have thought that the reason some meds/foods/supplements 'help', affect me positively, is their clearly off label effect of changing ph; antibiotics do this, hormones, foods...virtually everything has this potential; one doc actually told me outright that he thought it was the saline vehicle and other properties of the cleocin IV's ( NOT cleocin's antibiotic / microbe killing capacity) that made me feel better for a few hours, and I agree, knowing how unpopular this might be...but hey, its a start..
  18. MishMash

    MishMash *****

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    Boy does this ever sound familiar. I would say the most desperate times in post-diagnosis years came when I would spend hour after hour reading about supplements, and walking the isles of health food stores, looking for the one thing that would help me. Both the expense and the disappointment were huge. I took enough supplements over the course of two years to sink a battleship. The only thing that had a "noticeable" effect was vitamin B-12. And even that faded over time. Now looking back, i can say that avoiding certain foods, toxins and eating green vegetables and protein was the only thing that really helps.
  19. taniaaust1

    taniaaust1 Senior Member

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    Ive found Gingko to be of no help at all for my brain. Neither did fish oil or evening primrose oil help any of my ME symptoms. (Fish oil thou helps my osteroarthritis).

    Methylation things thou have been a good help for me (methyl B12, active folate) along with things which are antioxidents (selenium/vit C are of use to me) along with molybdenum.
  20. taniaaust1

    taniaaust1 Senior Member

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    MishMash.. if you havent done so already.. I suggest to go and have a 2hr glucose test done with the insulin included to get issues there ruled out. Those who have insulin issues feel better on high protein diets (it helps stop the insulin from spiking) along with the avoidance of many other things is needed in those who have this issue. You could have hyperinsulinemia (insulin resistance)... prediabetic state and that can give a lot of symptoms to some of us who have this.
    MishMash likes this.

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