The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Cause of my cfs

Discussion in 'General ME/CFS Discussion' started by patolos, Sep 1, 2016.

  1. patolos

    patolos

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    I know what caused my cfs. When(/since) I was little (age 4 or 5) I had an aversion to most foods before I ate them, I sensed that the foods available were not quite right. All I would feel like eating just about was raw salad, mangoes, pineapple and I had to be encouraged to eat other stuff and after a while I got accustomed to the foods available and just ate them despite my sense not to..

    About 3 years ago I realised when I was eating asparagus that it was having a beneficial effect on my circulation and that I could sense how foods would effect my circulation before I ate them (and remembered about how I'd had this sense since I was little). I followed that sense and found other foods also had a slight beneficial effect on my circulation: spinach, cabbage, kale, passion fruit flesh (not seeds), tomato flesh (not skin, not seeds). Following that sense I also realised African meats and fish and grains and beans were near enough neutral to my circulation: camel, ostrich, ostrich egg, springbok, zebra, cape snoek, cape hake, teff, kilombero rice, black-eyed beans. (and salad and emmer generally neutral also). Meanwhile the rest of foods(/ingested substances) effected my circulation negatively, the worst being unnatural substances (such as an antidepressant). Thus I realized I had(/have) a progressing (according to my diet) circulation condition over time explaining the gradual onset of coldening extremities, pins+needles more and more frequently, during my teens feeling unhealthy and then the puzzling lessening vitality, and later fatigue+joint pain.

    Eating a diet of African origin foods and neutral foods and beneficial foods, I can stop the circulation condition from progressing and even marginally improve it. However this is nearly sustainably implausible as it's very difficult to get enough energy in doing this (as living in the UK where limited neutral+benefitting foods available).

    My theory is that humans evolved mostly in Africa, specifically to the African environment, and some people, such as I, have a neutral circulation reaction to African foods and generally speaking (besides leafy greens and tomato flesh and passion fruit flesh and salad) have a negative circulation reaction to a diet outside of that (including swallowing substances outside of Africa), leading to a slow progressing condition (fatigue, pins and needles, pain in joints, etc) depending on diet and ingested substances.


    The sense is an intuitive sense of how something will effect circulation pressure or viscosity or speed or something along those lines.
     
    Last edited: Sep 7, 2016
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  2. Cheesus

    Cheesus Senior Member

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    Sapiens have lived outside of Africa for 70,000 years, and we have made a number of adaptations since then.

    I am also no expert on the biochemistry of food, though I would be very surprised if zebra and ostrich shared some innate quality that made them more similar to the body than beef and chicken respectively.

    I understand that you have an instinct that has led you to this, and I do not like to belittle the experience of patients as I have so often had experiences with my health that no one will believe, however from the place that I am sitting it sounds a little farfetched, and I would urge you to keep an open mind to food and to the cause of your condition.
     
    Last edited: Sep 1, 2016
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  3. patolos

    patolos

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    I was looking forward to responses and I wasn't expecting that. I thought you'd be like "wow" rather considering if this the cause for others...etc, I'm not making this up, I'm sure that this is the cause of my condition, there's absolutely no doubt about it.

    I guess that 70000 years (which doesn't sound like much to me in evolutionary years) didn't eradicate the condition because it develops slow enough for reproduction and doesn't endanger the group as a whole to name just a couple.

    I guess I understand your skepticism but I can assure you I am not mistaken.
     
    Last edited: Sep 1, 2016
  4. Cheesus

    Cheesus Senior Member

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    I wasn't considering if it was the cause for others, but I was just thinking about the theory as a whole and there were certain things that struck me as improbable. As I say, however, I do not want to sound completely dismissive as I am sure there is something you have identified in your experience that is difficult to communicate to others - I have been there all too often!

    I wish you all the best for finding your health.
     
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  5. Cheesus

    Cheesus Senior Member

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    There are some credible theories from exceptional doctors that circulation problems play a role for some patients - and if I am not mistaken there may be some supporting evidence too, at least for hypoperfusion in the brain. It could also be possible that your symptoms are somehow influenced by food, though I do not have enough expertise to say how. My concern was simply that you would put yourself to a lot of trouble to eat a diet that might not be necessary. I'm glad to hear that you have an open mind in that regard.
     
  6. patolos

    patolos

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    I just accidentally deleted a post, using a phone, is there a way to get that back?

    Anyway hypoperfusion is a nice way to describe it
     
  7. JES

    JES Senior Member

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    There is also a more simple explanation. Many of those vegetables you mention contain nitrates, which through a process in the body will convert to nitric oxide, which in turn acts as a vasodilator. Quite a few CFS/ME patients on this forum have seen benefits from nitric oxide modulating supplements, for example this poster. Some doctors believe CFS/ME is partly a blood circulation disorder and this is also something that Fluge/Mella have hinted in their recent study (some of their patients have seen improvements in symptoms after high dose Arginine/Citrulline).
     
  8. Hip

    Hip Senior Member

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    How do you know that a food, even after you eat it, affects your circulation? What are you using to measure you circulation, and measure the reduction in circulation after easting certain foods?
     
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  9. patolos

    patolos

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    It's a sense I was born with. Its pretty obvious that the sense is a sense of circulation to me but obviously hard to describe to others, it's like intuitively I know how food will effect my circulation and can sense it change when I eat.. it is sort of like a change in pressure (of circulation or maybe veins) when eating the food.
     
    Last edited: Sep 1, 2016
  10. Hip

    Hip Senior Member

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    You may well have some feelings in your body that are triggered by certain foods; but that does not prove those feelings are connected to or reflect the state of your blood circulation. It is possible they might; but equally possible those feelings may bear no relation to your circulation.
     
  11. patolos

    patolos

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    Well it's obvious to me. I don't know how I could possibly prove it. I know my sense is linked directly to my circulation, it's so obvious to me, I don't know how to explain it.. like.. I'm trying to think of an analogy that fits and works..

    When you walk barefoot and you feel the ground under your feet, it's obvious that's what you are feeling but you can't exactly prove it.
     
    Last edited: Sep 1, 2016
  12. Hip

    Hip Senior Member

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    Well blood circulation can be objectively measured with Doppler ultrasound devices, so in that's how you could prove (or disprove) that these apparently subtle feelings of a "change in pressure" in your body were related to blood circulation.

    It's good to be in tune with subtle feelings and subtle signals in the body, as sometimes those signals can be an intuitive guidance to your health. But to assume that such subtle signals mean something scientifically specific like reduced blood flow is not a reliable way to develop any theory, unless those signals are established symptoms of a certain condition or disease.

    For example, if you developed cold hands and feet after eating certain foods — this is often assumed to be caused by poor circulation — then that perhaps would have more credibility. Many ME/CFS patients have constantly cold extremities, incidentally.

    Do you have cold hands and feet, or any of the other symptoms often associated with poor circulation, such as numbness, tingling, pain? See: symptoms of poor circulation.
     
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  13. patolos

    patolos

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    Thanks

    I don't know what is going on exactly in my circulation, I am just really sure that what I ingest is tied to circulation for me.

    I have cold extremities, numbness tingling pins and needles frequently and slightly weak hands
     
    Last edited: Sep 2, 2016
  14. JES

    JES Senior Member

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    I experience daily cold extremities, which is likely related to endothelial dysfunction, that is, the blood vessels do not respond as they should (vasodilation vs vasoconstriction). In a normal person they constrict the right amount to prevent blood from pooling in the extremities when you stand up, but yet allow some blood to flow so your extremities won't go cold. As I wrote earlier, this is a typical symptom of CFS/ME.

    I recommend you to do a test by eating lots of beetroots or drinking beetroot juice. Beetroot, like spinach, is very high in nitrates, which will convert in the body to nitric oxide and widen your blood vessels, allowing more blood to flow. The effect behind both beetroot and spinach is tied to nitric oxide and the nitric oxide pathway is beleived to be dysfunctional in CFS/ME.
     
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  15. patolos

    patolos

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    That's the thing, beetroot juice and some of the other high nitrate foods don't have the beneficial effect on my circulation I'm talking of (so it doesn't fit). Beetroot puree(has a stronger effect than juice for me) does have a major sort of vasodilation effect on my circulation but it also has a sort of negative effect on my circulation. Perhaps nitrate plays a partial role in the spinach helping but I think there's more to it than that as well. Tomato flesh and passion fruit flesh I feel it has something to do with their charge or stickiness that helps (charge may not make any sense but that's the sort of feeling I get).

    And also, I don't really get relief from beetroot juice or red wine which has a similar effect for me, despite the seemingly extra blood flow I guess, which is weird, so I'm leaning towards viscosity or something like that being the problem
     
    Last edited: Sep 2, 2016
  16. u&iraok

    u&iraok Senior Member

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    ..and then there's this, lol: Did first humans come out of Middle East and not Africa?

    Read more: http://www.dailymail.co.uk/sciencetech/article-1341973/Did-humans-come-Middle-East-Africa-Scientists-forced-write-evolution-modern-man.html#ixzz4J6jiD77q

    I have wondered, however, if what you grew up eating has an effect on you. That you do better if you eat [the healthy] foods from your childhood or from the local soil? May be a far-fetched idea but I've noticed people, including myself and my husband, seem to do better when we eat foods, especially fruits and vegetables that we grew up on. My husband's from Jamaica and so I've really noticed it with him. And this is aside from preference or an emotional connection.

    Is this the case with you? Where are you from? Or could it be that the food you mention is grown in healthy soils without pesticides and the animals are eating free range grasses and so their meat is more nutritional? Or that you're eating more meat now and more food and more varieties of food?

    I believe in intuition but maybe it's more of a general sense of what is healthy than circulation specifically? Do you equate poor circulation with ME/CFS?
     
    Last edited: Sep 2, 2016
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  17. Cheesus

    Cheesus Senior Member

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    I have just listened to a book about human evolution written by an anthropologist and released in the last year which says that sapiens did make an early attempt to migrate out of Africa before 70,000 years ago. However they/we apparently could not compete with the humans already living in the Middle East and so were unsuccessful in their/our attempt. In the intervening years, however, we had the Cognitive Revolution, which enabled us to engage in abstract thought. When we gave the migration a second go around 70,000 years ago we had the competitive advantage over our Middle Eastern cousins and the rest is history.

    My guess would be that the remains discovered in that article you cite above are from that earlier failed migration, though I cannot be sure. I would be interested to see a more recent analysis of those findings.
     
    Last edited: Sep 2, 2016
  18. patolos

    patolos

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    It's an interesting idea and it's plausible in some ways but I have come to believe we are best eating the foods we evolved eating and seeing as we evolved for I don't know how long, maybe 200 million years, in Africa I think we are best evolved to eat a variety of wild African food, thats my belief anyway, or at least I am best evolved to do this because of this circulation condition I have, and I think second best to this would be to eat a Mediterranean sort of diet and I agree with eating no artificial pesticides etc. I'm from the UK. My sense is of specifically circulation, I'm sure of it and I equate my cfs to poor circulation and if I have the same cfs as others then their cause is the same.
     
    Last edited: Sep 2, 2016
  19. Lolinda

    Lolinda after meals, I need to lay in bed for hours

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    @patolos I like your descriptions and intuitions. And I am well familiar with the critical reactions of most people to anything like that :eek: :D. The interesting thing is now how to turn your intuition into science. Not because one had to make rocket science out of good natural intuition. But because it helps to work out the essence what really makes the difference. And knowing what the real difference is helps to broaden your choices of food and avoid the wrong ones. Now, I definitively support that nitrate is a good explanation as proposed by @JES just want to add: that beetroot juice has also negative effects seems understandable to me. I give examples:
    • Stomach acid improves upon nitrate, which is gastroprotective and improves blood flow. but if there is too much nitrate, stomach acid will decrease according to a study
    • nitrate can be fermented by certain gut bacteria. so if you take in too much, then you multiply the bad bugs. nitrate in the form of herbal leaves is well protected from bacteria because these leaves have a lot of stuff to protect themselves (just think menthol in mint leaves. but all the other leaves have protetive substances too. leaves do not just get rotten)
    Then you describe a lot of not domesticated animals, the meat of which you profit from. And domesticated ones, which you do not like. Science tells that domesticated animals are far less healthy:
    • measurable increases in postprandial inflammation
    • measurable differences in omega 3 and omega 6 (this depends though not so much on the animal, to my knowledge but rather on grass fed / grain fed. To put it simply: an animal fed corn will contain the omega 6 from corn. And you, fed these animals, will contain the o6, too. Eat crap -> be crap -> feel crap. :eek: :D:(:( :(
    If anyone is interested in these research things, I am glad to dig out the papers to prove what I say.
     
  20. Hip

    Hip Senior Member

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    If you are not experiencing improvements from vasodilators like the nitrates in beetroot juice, then blood viscosity sounds more likely to be the parameter that you are intuitively sensing, when you feel this sensation of a "change in pressure" in your body after eating certain foods.

    According to this Wikipedia article on hemorheology (hemorheology = the study of blood flow characteristics), there are four factors that relate to blood viscosity:

    Let's go through these four factors one by one:

    Hematocrit = a measure of how much space red blood cells take up in your blood (hematocrit is the volume that red blood cells occupy in your blood, as a percentage of total blood volume). Hematocrit is normally around 45% for men and 40% for women. Hematocrit has the strongest impact on blood viscosity: one percent increase in hematocrit can cause up to a 4% increase in blood viscosity. Although I think hematocrit is generally normal in ME/CFS.

    Red blood cell deformability = how easily red blood cells can deform and change shape under pressure; blood can flow more easily through tiny capillaries when the red blood cells are soft and deform easily. If the red blood cells are stiff and cannot deform very well, then they may not pass so easily through the narrow capillaries of the blood microcirculation.

    Interestingly enough, malaria-infected red blood cells become stiff and sticky. Ref: 1

    (A related concept is red blood cell shape: Dr Leslie Simpson has investigated red blood cell shape in ME/CFS. Healthy people usually have a higher percentage of the disc shaped blood cells, which flow easier than the other shapes. In his studies, Dr Simpson found ME/CFS patients tend to have a higher percentage of cup-shaped and other shaped blood cells which have more difficulty getting through small capillaries.)

    Erythrocyte aggregation = how easily red blood cells (erythrocytes) stick or clump together. When red blood cells clump together, they form what are called rouleaux. A rouleau is a collection of red bloods cells all grouped together, looking like a stack of plates or disks (red blood cells are usually quite flat like plates, and can stack one of top of the other).

    Plasma viscosity = the viscosity of the water component of the blood; plasma viscosity is determined by the amount of large molecules dissolved in the water component of the blood; the more protein carried in the blood, the higher the plasma viscosity; inflammation can also increase plasma viscosity, because extra protein is often released from the site of inflammation and circulates in the bloodstream.



    In addition to the above, Dr Dave Berg has investigated blood hypercoagulation in ME/CFS. Dr Berg thinks that in ME/CFS, blood clots too quickly (hypercoagulates), and as a result, the blood becomes more viscous.

    Dr Berg and others found that in ME/CFS, there is a small but constant production of the the thrombin being released into the blood. Thrombin results in the production of soluble fibrin monomer (SFM), a sticky protein that increases blood viscosity.



    It's possible that the foods your are eating affect one or more of the above blood viscosity-determining factors.

    The foods you sense improve your circulation — asparagus, spinach, cabbage and kale — are all high in iron (see here), but Google says iron may increase blood viscosity.

    Have you been tested for anemia, by the way? Anemia can produce symptoms very similar to those of ME/CFS. It could be that the benefit you are getting from these vegetables is simply the iron, if you have iron-deficiency anemia.

    Spinach and kale are very high in vitamin K (see here), which can increase blood coagulation.
     
    Last edited: Sep 2, 2016
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