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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. charles shepherd

    charles shepherd

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    There is quite a lot of anecdotal (= patient) evidence, and some research evidence, to show that vitamin D deficiency can occur in people with moderate and severe ME/CFS - because they are seldom (or not at all) outside in the sunshine. The MEA guidelines for doctors therefore recommends that groups at risk should be tested (a simple blood test for 25-hydroxyvitamin D) for vitamin D levels and that vitamin D supplements should be taken by those at risk, and appropriate supplementation should be given to people with a proven vitamin D deficiency. The role of vitamin D, and vitamin D deficiency, is covered in the research and treatment sections of the MEA purple booklet. We also have an MEA information leaflet on vitamin D assessment, deficient, prevention. and treatment.
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  2. charles shepherd

    charles shepherd

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    Vitamin D levels in ME/CFS - this paper could be used if a doctor is unwilling to investigate the possibility of vitamin D deficiency in someone with ME/CFS who falls into an at risk group.

    Int J Vitam Nutr Res. 2009 Jul;79(4):250-4. doi: 10.1024/0300-9831.79.4.250.
    Serum 25-hydroxy vitamin D levels in chronic fatigue syndrome: a retrospective survey.
    Berkovitz S1, Ambler G, Jenkins M, Thurgood S.
    Author information

    Abstract
    INTRODUCTION:
    Patients with chronic fatigue syndrome (CFS) may be at risk of osteoporosis due to their relative lack of physical activity and excessive time spent indoors, leading to reduced vitamin D synthesis. We hypothesized that serum 25-OH vitamin D levels are lower in CFS patients than in the general British population.
    SUBJECTS AND METHODS:
    We performed a retrospective survey of serum 25-OH vitamin D levels in 221 CFS patients. We compared this to a group of patients attending the hospital for other chronic conditions and to a large British longitudinal survey of 45-year old women, using a variety of appropriate statistical approaches.
    RESULTS:
    25-OH vitamin D levels are moderately to severely suboptimal in CFS patients, with a mean of 44.4 nmol/L (optimal levels >75 nmol/L). These levels are lower and the difference is statistically significant (p<0.0004) than those of the general British population from a recent national survey, but similar to those in patients with other chronic conditions.
    CONCLUSIONS:
    This data supports the recommendation made in recent NICE guidelines that all patients with moderate to severe CFS should be encouraged to obtain adequate sun exposure and eat foods high in vitamin D. Oral or intramuscular vitamin D supplementation should be considered for those whose levels remain suboptimal.
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  3. Mij

    Mij Senior Member

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    @charles shepherd thank you so much for all the support here, your time is much appreciated.

    What some are over looking is that vitamin D deficiency in ME may be from lack of sun exposure (for sure), but also low Magnesium levels which is an issue for us. I took magnesium and taurine injections for years and my D levels went right up. This text states, "magnesium depletion may impair vit D metabolism".

    Low serum concentrations of 1,25-dihydroxyvitamin D in human magnesium deficiency.
    Rude RK, Adams JS, Ryzen E, Endres DB, Niimi H, Horst RL, Haddad JG Jr, Singer FR.
    Abstract
    The effect of magnesium deficiency on vitamin D metabolism was assessed in 23 hypocalcemic magnesium-deficient patients by measuring the serum concentrations of 25-hydroxyvitamin D (25OHD) and 1,25-dihydroxyvitamin D [1,25-(OH)2D] before, during, and after 5-13 days of parenteral magnesium therapy. Magnesium therapy raised mean basal serum magnesium [1.0 +/- 0.1 (mean +/- SEM) mg/dl] and calcium levels (7.2 +/- 0.2 mg/dl) into the normal range (2.2 +/- 0.1 and 9.3 +/- 0.1 mg/dl, respectively; P less than 0.001). The mean serum 25OHD concentration was in the low normal range (13.2 +/- 1.5 ng/ml) before magnesium administration and did not significantly change after this therapy (14.8 +/- 1.5 ng/ml). Sixteen of the 23 patients had low serum 1,25-(OH)2D levels (less than 30 pg/ml). After magnesium therapy, only 5 of the patients had a rise in the serum 1,25-(OH)2D concentration into or above the normal range despite elevated levels of serum immunoreactive PTH. An additional normocalcemic hypomagnesemic patient had low 1,25-(OH)2D levels which did not rise after 5 days of magnesium therapy. The serum vitamin D-binding protein concentration, assessed in 11 patients, was low (273 +/- 86 micrograms/ml) before magnesium therapy, but normalized (346 +/- 86 micrograms/ml) after magnesium repletion. No correlation with serum 1,25-(OH)2D levels was found. The functional capacity of vitamin D-binding protein to bind hormone, assessed by the internalization of [3H]1,25-(OH)2D3 by intestinal epithelial cells in the presence of serum was not significantly different from normal (11.42 +/- 1.45 vs. 10.27 +/- 1.27 fmol/2 X 10(6) cells, respectively). These data show that serum 1,25-(OH)2D concentrations are frequently low in patients with magnesium deficiency and may remain low even after 5-13 days of parenteral magnesium administration. The data also suggest that a normal 1,25-(OH)2D level is not required for the PTH-mediated calcemic response to magnesium administration. We conclude that magnesium depletion may impair vitamin D metabolism.

    PMID:
    3840173
    [PubMed - indexed for MEDLINE]
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  4. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Just found the full text pdf here.
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  5. charles shepherd

    charles shepherd

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    You might also find this video of a presentation by Prof Mark VanNess in Bristol useful:

    https://www.youtube.com/watch?v=q_cnva7zyKM

    I attended a half day physicians workshop with Mark and his team at the IACFS conference in San Francisco last month and am currently writing up a detailed report (7,600 words so far) of what was a very interesting clinical and research meeting.
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  6. Nico

    Nico Senior Member

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    Dear Dr. Shepard, My physiology changed after the Hep B vaccine in 1999. I got very sick after each shot. When the series was done, the first symptoms of physiologic change was "leaden legs" when exercising. Exercise tolerance diminished remarkably (I was very athletic). I had an MMR a few months before. I don't think that helped matters much. Thank you for somewhat validating my theory re: what really, really got the ball rolling. I'm not sure if this helps your research, I don't remember doing a survey at any time about this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Science to Patients, video # 40: Dr Charles Shepherd--ME & possible treatments.

    Questions of patients Dr. Charles Shepherd answers in this video are:

    - What are the most common symptoms in ME?
    - Which symptoms can be treated?
    - What other treatment suggestions can you give?
    - What help can be given to very severe ME-patients?

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  8. peggy-sue

    peggy-sue

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    Getting back to B12, briefly, because somebody has just posted a link to this paper in another thread.
    http://jrs.sagepub.com/content/92/4/183

    It would appear that simon wesseley himself found evidence of B12 deficiency in '99.
    But he appears to have conveniently "forgotten" this.
  9. SOC

    SOC Moderator and Senior Member

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    Nah, he believes we're psychogenically making ourselves physically ill. So any objective measures are still explained away by our supposed ability to create physical illness by just thinking wrongly. :rolleyes:
    From Wikipedia -- Psychogenic Disease
    Last edited: Apr 22, 2014
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  10. peggy-sue

    peggy-sue

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    You're using big words, @SOC :eek:;)

    Are you saying that he's excusing the low B12, on the grounds that we managed to supress it with "mind control".

    Actually, shouldn't the CIA be interested in us if we have such amazing mind control? :whistle:
    After all, they did try to train men to kill goats by staring at them. :p
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  11. PNR2008

    PNR2008 Senior Member

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    By staring at people @peggy-sue, the only response is making them uncomfortable....sometimes very uncomfortable but certainly not CIA capabilities. So I'm in the clear. lol
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  12. Valentijn

    Valentijn Activity Level: 3

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    Well it worked, didn't it? :rofl:

    Though I suppose it's a similar approach to psychosomatic research: stare at the goats long enough, and some will randomly drop dead eventually!
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  13. SOC

    SOC Moderator and Senior Member

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    Yup, that's the theory of psychogenic disease. Convenient, isn't it?
    How do you know they're not? :ninja:
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  14. Rob Wijbenga

    Rob Wijbenga

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    On April 21, the next webinar of dr. Charles Shepherd has been broadcast, in which he talks about ME, its most significant symptoms and possible treatments:

    http://youtu.be/R7JtNImePlY
  15. Rob Wijbenga

    Rob Wijbenga

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    http://youtu.be/DmyR33LeUPs is the right link, tho' Llewellyn King's video is worthwhile watching as well :D

    this broadcast was followed by a very noteable chatwingsession with dr. Shepherd on Thursday 24th April.

    if you would wish to receive all transcripts of both webinars and chatsessions, simply send your request to wvp@me-cvsvereniging.nl

    Next webinar within the Dutch porject Science to Patients will be broadcast on May 5th,
    on promising discoveries & researches.

    Next inernational chatsession with dr. Charles Shepherd will be on Thursday 15th May, from 5 pm cet onward. (logging in with http://chatwing.com/mecvsvereniging.wvp)
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  16. Leopardtail

    Leopardtail Senior Member

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    I feel you made a good point here I consider very strongly that once Mito dysfunction occurs one must deal with it, it becomes central in the same way that lack of Insulin does in Type I diabetes even though immunology create the disease. However remains difficult to know the extent to which it's an Etiology or a symptom with certainty. We need to test people very early in the disease process and while at low severity. It is attractive in that it can explain pretty much every feature of the disease.
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  17. A.B.

    A.B. Senior Member

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    What makes the Hepatitis B vaccine different?
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  18. Leopardtail

    Leopardtail Senior Member

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    Funny how much evidence he 'forgets' isn't it?
  19. Leopardtail

    Leopardtail Senior Member

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    Dr Shepperd,

    when discussing blood flow - why is volume always ignored by medics? A very small scale experiment showed that restoring blood volume (with saline) caused the nervous system of ME patients to normalise. The nervous system (in that limited number of patients) was prioritising the core (heart and lungs) and reducing peripheral blood flow. Similar issues are known in other diseases causing marked reduction in blood volume. I find it quite scandalous that none of our national charities have repeated this and verified it (either way).

    I have personally experienced complete restoration of mental function with administration of Saline.

    Vis-a-vis Mitochondria in the circumstance - blood cells also show mitochondrial under-performance (various papers by Howard and MyHill) hence their issue would not be 'blood supply'. I do however agree that blood supply seems likely to aggravate issues in peripheral skeletal muscle - there does seem to be tendency to forget we have mitochondria outside muscle however :). Those of us for whom mental dysfunction is our biggest issue would quite like some focus there!

    Also Myhill has identified two groups of patients. One produces more lactic acid under when 'going anaerobic' the other uses the very destructive process in which two molecules of ADP become one of ATP. Given these two groups, just how reliable is lactic acid as an indicator of Mito dysfunction rather than pain?
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  20. Mij

    Mij Senior Member

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    Possibly because you have to get a series of x3 Hep B vaccines within a six month period. Intial dose, 30 days and 6 months. Or, x4. Initial, 1 month, 2 months and booster in 1 year.

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