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Science to Patients: Talking ME, Exercise and the Mitochondria - with Dr Charles Shepherd

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 7, 2014.

  1. Leopardtail

    Leopardtail Senior Member

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    Dr Sheppherd,

    is there evidence the presence in the Sun is that cause of Vit D deficiency or is this an assumption?

    I ask because my Aunt and I both have low 1,25 and 0,25 vitamin D in summer. I am out in the garden most days (resting) despite an ability rating of 30 at that time of year. My Aunt is constantly out. I realise more in the 25% group may fit the hypothesis, but what evidence exists that sunshine is the issue rather than something metabolic?

    Could this be an important link in the chain regarding the pathology of ME?

    Leo
     
  2. Leopardtail

    Leopardtail Senior Member

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    They did that to me with Vitamin D. I was taking 2000IU / day, it was still in the 'supplementation recommended range' and they concluded 'no action was necessary'.
     
  3. Leopardtail

    Leopardtail Senior Member

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    This childishness really ticks me off. They block funding for research, dismiss the research that is done, refuse to try anything due to lack of research, contradict what the patient knows works, and refuse to test for known causes of fatigue, refuse to use common sense clinical judgement.

    I am the only person to whom this looks like religious hatred?
     
    Cheshire likes this.
  4. Nancy Blake

    Nancy Blake

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    Since blood flow problems are an important factor, and we see references again and again to lack of oxygen and build-up of lactate, isn't it time to re-evaluate the contribution do hemorheology and Les Simpson's considerable body of researn into the role of shape changes in the erythrocyte population in a number of chronic. Illnesses, especially ME/CFS? In simple terms, in order to provide oxygen and remove lactates from the cells, red blood cells have to be able to 'deform' enough to travel through the micro circulation. The most commonly occurring cell shape, the boconcave discocyte, the red blood cell is able to do this. In several chronic illnesses, micro graphs of immediately fixed blood shows a high proportion of red blood cells which are of a variety of irregular shapes which are non- deformable, hence interfere with the passage of red blood cells through the micro circulation. Muscle cells, the cells in the cognitive areas of, the brain, and cells in the endocrine system are particularly vulnerable to the consequent lack of oxygen and build-up of lactates. This situation can explain the constellation of symptoms, especially the failure of the anaerobic muscle metabolism, and I would guess could go some way to explaining the mitochondria problems. There are relatively easily obtainablel supplements which can address blood flow problems of a this type, and many ME patients have benefitted in terms of improved levels of well being through trying these out. I am baffled on an ongoing basis, as I read the research that is going on, at the complete absence of what seems to me a very important piece of the jigsaw in trying to understand how this complicated illness works, and saddened by the consequent unavailability of some helpful information for patients.

    I am also awaiting a trial of systematic rest and conservation of muscular exertion as a treatment - and the day when GET will finally be consigned to the same category as any dangerous drug.
     
    Last edited by a moderator: Aug 25, 2014
  5. Nancy Blake

    Nancy Blake

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    See elsewhere my comments on the work of Dr (PhD in biology, a research hemorheologisr) Les Simpson. One of his recommendations to improve blood flow is injections of B12 as hydrocobalamin. Glad to here it works for you. If Les' work were more widely recognised it may not have taken so long to find it!
     

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