CFS/ME a brain and nerves issue?

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CFS/ME on this forum is classified under the heading of a brain and nerves issue. That classification does not gell with my experience nor with what I have read on this forum of the experience of others. The impression I have is rather of a general disruption of the metabolic processes of our bodies. 

I should be glad of your observations on this point.

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  • Posted

    Hi George, i agree though i suspect "they" will say it is expressed mainly through brain and nerves by symptom. It is a general disruption and i think by whole body inflamation
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    • Posted

      Thanks Andrew. It may well be at cellular level. If researchers don't look in the right place they may well not find an answer.
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    • Posted

      from my reading and attempts to be sientific i wonder if it is a histamine resposne  / stress cortisol type funstion and i wonder if it is the mitochondria which house the little blighter which is casuing the problems but as a plasmid not a full virus (or bacteria)
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    • Posted

      That's very interesting Andrew! 

      It fits me because I've been taking antihistamines since before I got ME. The first symptom I had was skin itching, a lot of stress in my life at the time, and since ME onset I've developed allergies.

      Studies and suggestions like the Epsen Barr virus have been suggested and I'm not ruling out that a virus could trigger the disease, but if such a powerful virus exists that could bring about ME and viruses exist by spreading I'd think a lot more people would have it?

      If there's something like a virus causing this and our immune systems are already compromised by environmental factors, so our mitachondrial power stores in our cells can't deal with anything thrown at us that may make sense? 

       

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    • Posted

      yes, andrew, the cell's mirochondria fail to varying degrees in ME/CFS. i was v. deficienct in over half the vital ingredients necessary to keep the mitochondria working. if i forget a dose it feels like all the fuel in the gasget has run out and i have to refuel to do anything i.e. be upright.

      Caitlin.

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    • Posted

      Makes sense Caitlin because I was deficient in sodium and goodness knows what else! Through taking a lot of herbs, better diet, Kelp for the Thyroid, well this would be a very long reply if I said everything. But I'm a lot better than I was! razz
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    • Posted

      Thank you... There were suggestions that the plasmids had been carried by Glandular Fever type viruses as it seems in the larger viruses there can be plasmid hitching, though i would have thought it would be more likely in bacteria (hitching) and they would come in with secondary infections with the Glandular Fever or chest infection or sinus infections starters. Plasmids are very hard to test for and their effects are more insidious. To me it is why ME and CFS are so hard to test for and are tested for by exclusion of all other... Plasmids usually get included into the Gene structure and i wonder if that was what was being picked up with the great find , oh - no it isnt, of the mouse cancer virus found in a large number of ME sufferers a couple of years ago? does it bind into old viral DNA in us and this one was a close match?
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    • Posted

      We're born with certain genetic predispositions and weaknesses. Psychological and biological. Everything in our bodies can be affected. Some of us are more prone to certain things but good nutrition can, in many cases, solve our problems over time and with persitence.

      We can't put it under the microscope because we're all far too complex. And if the medical profession finds a cure it'll be too late for us!

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  • Posted

    hi george. the WHO organisation catogories it as a 'neurological condition'.

    yes, those chemistry wizards who study the metabolic pathways in illness have found many abnomalies in ppl with ME/CFS, specifically in the citric acid krebs cycle pathway. dr in environmental medicine has studied/tests this one and works towards correcting the identified deficiencies/anomolies.

    there's another PhD chappie who has worked in b12 deficiency for aeons now works with ppl with ME/CFS. he has identified a number of metabolic pathways that he considers are responsible for the onset of ME/CFS. his hypothesis is quite convincing. i must say, however, my chemistry knowledge is rather rudimentary & his knowledge is vast.

    Caitlin

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    • Posted

      I should be so glad to think that succeeding generations will not have to suffer these appalling ailments. I hope these researchers bear great  fruit.
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    • Posted

      i truly feel that this condition could be 'nipped in the bud' if it was allocated sufficient funds for research purposes and the appropraite treatment implemented at patient level - i.e. early diagnostics and treatmentthere's needs to be better differential diagnosis to differentiate from conditions with similar symptom pictures. and acutomatic screening for b12 and D deficiency & Full Thyroid Hormone screening. @ the word go.
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    • Posted

      From the blood tests I've had only two notible things were found in the results, that I have low sodium levels and a high white blood cell count. I wonder if this might cohere with other ME patients blood tests.
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    • Posted

      interesting as high white cell implies fighting off an infection, but ME is imunosupressing... low sodium - do you drink (water) or "glow" a lot?
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    • Posted

      That's what bothers me when people, including doctors keep talking about us having 'low' immune systems, or suppressed immune systems it doesn't make sense from learning about people's experiences with ME.

      It's more plausible to me that we have run riot immune systems fighting too hard, making us fatigued, i.e. from stress etc, environmental pollution. Confused immune systems may be a good word for it?

      I was eating the wrong salt, table salt. I eat loads of pink himalayan rock salt now and I expect that if I had a blood test now my sodium levels wouldn't be low. We need salts and other minerals to function.

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    • Posted

      Hi GeoriaS

      When I first got ill my white blood cell count was persistantly high in all tests and the Dr's just fobbed it off 'Oh you are probably fighting off an infection'.  Since then I have read that high white cell count can be present in ppl with ME - particularly at the on-set.  I wish these researchers could put all their findings together in one place and that Dr's had better access and knowledge of these things.  They may actually take more notice of our presenting symptoms then and get refferals done much quicker.  It almost 9 years for me to get a dr to take me seriously.

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    • Posted

      The doctor that told me I had a high white blood cell told me it but nothing about it, what it means or what to do about it!
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