The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Vitamin D supplementation may help to prevent a range of viral and bacterial infections

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Feb 16, 2017.

  1. charles shepherd

    charles shepherd Senior Member

    Vitamin D supplementation may help to prevent a range of viral and bacterial infections

    New research published today indicates that taking a regular vitamin D supplement will reduce the chance of picking up infections

    BBC health report on this research:

    Link to previous BBC news item on similar research: >>>>
    Everyone should consider taking vitamin D supplements in autumn and winter, public health advice in England and Wales says.

    It comes as a government commissioned report sets the recommended levels at 10 micrograms of the vitamin a day.

    But officials are concerned this may not be achievable through diet alone, particularly when sunlight, which helps in vitamin D production, is scarce.

    Low vitamin D levels can lead to brittle bones and rickets in children.

    Dr Charles Shepherd comments:

    We often flag up the fact that people with ME/CFS, especially those who are partially or totally housebound, are at increased risk of developing vitamin D deficiency - mainly due to the lack of exposure to sunlight (which helps with vitamin D production) but this may also be compounded due to lack of foods that are good sources of vitamin D in their diet (i.e. oily fish, eggs, fortified breakfast cereals).

    This new advice from Public Health England, which recommends that everyone should consider taking a vitamin D supplement during the autumn and winter months, is therefore very relevant - because vitamin D is essential for good muscle and bone health. So any deficiency of vitamin D in ME/CFS could add to the problems of muscle weakness that is already occurring.

    On a personal basis, I will now be following this advice and taking a vitamin D supplement during the autumn and winter months.

    Link to the most recent MEA statement on vitamin D and ME/CFS and our June 2016 MEA website poll on the subject:

    All aspects of vitamin D, and vitamin D deficiency, are covered in the MEA information leaflet on vitamin D:

    Summary of key points relating to the vitamin D (25-hydroxyvitamin D) blood test:

    The National Osteoporosis society (NOS) guidelines (UK, 2013) and the Institute of Medicine (US) classify vitamin D results as follows:

    • 25-hydroxyvitamin D of less than 30 nmol/L is deficient
    • 25-hydroxyvitamin D of 30-50 nmol/L may be inadequate in some people
    • 25-hydroxyvitamin D of greater than 50 nmol/L is sufficient for almost the whole population.
    Low blood levels of 25-hydroxyvitamin D may mean that you are not getting enough exposure to sunlight or enough vitamin D in your food to meet your body's demand or that there is a problem with its absorption from the intestines. Occasionally, drugs used to treat seizures, particularly phenytoin (epanutin), can interfere with the liver's production of 25-hydroxyvitamin D.

    High levels of 25- hydroxyvitamin D usually reflect excess supplementation from vitamin pills or other nutritional supplements.

    More info on the vitamin D blood test:

    Summary of research into vitamin D and ME/CFS from the MEA purple book (2016 edition):

    Consider vitamin D deficiency in adults with restrictive diets and lack of access to sunlight. A retrospective study of serum 25-OH (hydroxy) vitamin D levels in 221 ME/CFS patients found moderate to severe suboptimal levels, with a mean level of 44.4nmol/l (Berkovitz et al 2009).

    Vitamin D deficiency often goes unrecognised and can cause bone or muscle pain and muscle weakness. It can co-exist with ME/CFS.

    Levels < 25nmol/ml may be associated with symptoms.

    NB: Low serum calcium and phosphate and an elevated alkaline phosphatase are consistent with osteomalacia.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
    keenly, Mel9, merylg and 8 others like this.
  2. aaron_c

    aaron_c Senior Member

    I haven't actually posted about this in this much detail before, and it seemed like a good place to do so. In my experience supplementing with Vitamin D can be problematic for many people with ME/CFS, and I have some ideas about the whole thing:

    Possible Answers to Two Questions I Have Had:
    1. Why Does Vitamin D Make So Many Of Us Tired (And Can Anything Be Done)?
    2. Why Does Vitamin D Help With My "Ammonia" Symptoms?

    Many of us with ME/CFS get quite exhausted from oral vitamin D (see this thread). Personally, I suspect this is from an interaction between vitamin D and TGF-Beta, which "potently induce 5-lipoxygenase," at least in myeloid cells [1]. Many people with CFS have high TGF-Beta [2]. I tested this theory on myself by taking the 5-LO inhibitor acetyl-11-keto-beta-boswellic acid (AKBA), which proved successful in eliminating the vitamin d-induced fatigue--although over time it failed to prevent other side effects and I had to abandon oral vitamin D3 [3]. Alternately, @nandixon had a slightly different theory for why vitamin D makes us tired.

    Whatever the cause, using a UV-B lamp gives me most of the benefits of oral vitamin D without triggering any of the negative side effects. The main benefit I get from vitamin D is a lessening/elimination of so-called "ammonia" symptoms, which I believe to essentially boil down to BH4 deficiency caused by NOS uncoupling caused by an increase in asymmetric dimethyl arginine (ADMA) relative to arginine [4]. Vitamin D deficiency increases production of TNF-alpha by white blood cells exposed to lipopolysaccharide [5], and TNF-alpha is known to decrease the function of DDAH, which breaks down ADMA [6]. Low vitamin D has also been correlated with high ADMA [7]. So it seems likely to me that, at least for some of us, vitamin D will decrease ADMA and thus increase BH4.

    To some degree the particulars of the science don't really matter. The essential story is that I feel unwell (in a very particular way) within a day or two of skipping out on my UV-B lamp, and that this particular unwell feeling can also be eliminated by oral vitamin D (albeit with some severe side effects). So I can tell that the UV-B lamp is doing something, and I can attest that whatever it does it appears to share many functions with oral vitamin D3. And it does this without the severe fatigue and other negative side effects I get from taking oral vitamin D.

    So what is the difference between oral vitamin D and vitamin D made in our own skin? I don't know for sure, but the most promising link I have found so far comes from the controversial researcher Stephanie Seneff, who says that vitamin D produced in the skin is in sulfated form, which gives it somewhat different biochemistry from the vitamin D3 found in, for instance, cod oil [8]. She also claims that sunlight stimulates the skin to produce cholesterol sulfate, although I'm not sure what, if any, role that plays here [8].

    In summary: I hope that some people with ME/CFS who have low vitamin D and/or "ammonia" symptoms, and particularly those who respond poorly to oral vitamin D will consider trying a UV-B lamp as a possible alternative. And if people do try a UV-B lamp, I hope they will post feedback either here or on the Vitamin D thread I linked above, regardless of whether the feedback is pro or con.

    And thank you in advance, @charles shepherd , for letting me threadjack to the degree I have. Perhaps colored by my own experience with vitamin D, it seems to me an important enough point to bring up in the context of recommendations being made to the ME/CFS community.

    Best Wishes,

    Aaron C


    1. Sorg BL, Klan N, Seuter S, Dishart D, Rådmark O, et al.Analysis of the 5-lipoxygenase promoter and characterization of a vitamin D receptor binding site.Biochim Biophys Acta2006;1761: 686–697.[PubMed]
    2. Bennett AL, Chao CC, Hu S, Buchwald D, Fagioli LR, Schur PH. Elevation of bioactive transforming growth factor-beta in serum from patients with chronic fatigue syndrome.J Clin Immunol.1997;17:160–166. doi: 10.1023/A:1027330616073.[PubMed][Cross Ref]
    3. Sailer ER, Subramanian LR, Rall B, Hoernlein RF, Ammon HP, Safayhi H. Acetyl 11-keto-b-boswellic acid (AKBA): Structure requirements for binding and 5-lipoxygenase inhibitory activity. Br J Pharmacol. 1996;117(4):615–618. doi: 10.1111/j.1476-5381.1996.tb15235.x. [PMC free article] [PubMed] [Cross Ref]
    4. Schwedhelm E, Boger RH. The role of asymmetric and symmetric dimethylarginines in renal disease.Nat Rev Nephrol.2011;7(5):275–285. doi: 10.1038/nrneph.2011.31. Link
    5. Yong Zhang, Donald Y. M. Leung, Brittany N. Richers, Yusen Liu, Linda K. Remigio, David W. Riches, And Elena Goleva.Vitamin D Inhibits Monocyte/Macrophage Proinflammatory Cytokine Production by Targeting MAPK Phosphatase-1.The Journal of Immunology, March 1, 2012 DOI:10.4049/%u200Bjimmunol.1102412. [or see the summary here]
    6. Ito A, Tsao PS, Adimoolam S, Kimoto M, Ogawa T, Cooke JP. Novel mechanism for endothelial dysfunction: dysregulation of dimethylarginine dimethylaminohydrolase.Circulation.1999;99:3092–5.[PubMed]
    7. Ngo DT, Sverdlov AL, McNeil JJ, Horowitz D. Does vitamin D modulate asymmetric dimethylarginine and C-reactive protein concentrations?Am J Med.2010;123:335–41.[PubMed]
    8. (Apologies on this last link...I hope in the future to be well enough to really look into this. For now, I will take Dr. Seneff's assertion as a fascinating possibility.)
    merylg, Tunguska, xena and 3 others like this.
  3. jump44


    Vitamin D has been a weird one for me personally. At times t seems to really help my mood and pain levels, others it sort of wires me. It seems as long as I keep the dose reasonable and have a lot of magnesium it treats me pretty well. Of course my levels when measured are fine so I sort of just take it by feel and doing it this way seems to give me a boost.
    merylg likes this.
  4. Silence


    Northern CA
    I wonder how many people who are sensitive to Vitamin D are also sensitive to calcium. I bet there is a subset of people who are already high in the active form. I think KDM says this means inflammation. I think vitamin D ingestion worsens neuroinflammation by increasing Calcium absorption thereby increasing intrcelluar calcium in the brain which leads to Ca2+ signanling excitoxicity. Simultaneously, a CFS brain that also has to deal with existing microglial activation, Excessive oxidative stress, low Glutathione, and mitochondrial dysfunction will further damage and make one very sensitive to vitamin D supplementation.

    In my case, supplementing with vitamin D causes me the same symptoms as supplementing with Calcium or ingesting any foods high in calcium. It causes an increase in my excitotoxic symptoms- ear ringing(ototoxicity), anxious, racing mind, panic attacks, sizzling in my brain with a stabbing sensation. I cannot even tolerate a drop which is 100 mg.
    merylg and keenly like this.
  5. nandixon

    nandixon Senior Member

    That idea I suggested previously probably isn't correct now. It's likely too far downstream.

    I believe now that the problem may be that in those of us who, for whatever reason, don't have properly regulated levels of 1,25-dihydroxyvitamin D3 (calcitriol), that that causes further inhibition of the Akt/mTOR (mTORC1) pathway, which I believe the recent Fluge & Mella study has shown to be under-activated in ME/CFS. (See my signature and other posts in the thread linked to.)

    Calcitriol inhibits mTOR in multiple different ways, and so is going to be a problem when it goes too high in the subset of ME/CFS people who have that problem. (A significant percentage of the normal healthy population also has a tendency for high calcitriol levels, around 15% if I remember correctly, but they don't notice it, except for a tendency to develop kidney stones, or unless they take really large doses of vitamin D3.)
    Last edited: Feb 17, 2017
    merylg and Tunguska like this.
  6. kangaSue

    kangaSue Senior Member

    Brisbane, Australia
    I don't have ME/CFS but I don't tolerate oral vitamin D because of chronic GI dysfunction but had to do something about it recently with being diagnosed with Osteoporosis so bit the bullet and tried this an injection of a megadose of Vit D which I had no issue with at all.

    I went that route because I saw this study which found a smaller megadose of Vit D as cholecalciferol could help with fatigue and pain in Fibromyalgia too
    merylg, ukxmrv and Gondwanaland like this.
  7. xena

    xena Senior Member

    Wow ok so that's very interesting
    CBS is actually downregulated by nitric oxide which is produced when uv hits the skin
    Could that be related? I don't know or under what the NOS enzyme does in relation to any of this detox wise but maybe it will make sense to you. Very exciting to hear that uv helps your ammonia symptoms.
    Check this out :

    Also, see Yasko on the effect of light and vitamin D on bh4 levels at 8:40 in this video


    Attached Files:

    Tunguska and aaron_c like this.
  8. aaron_c

    aaron_c Senior Member

    I didn't realize Yasko knew of a link between sunlight and BH4...huh. The papers she show are behind paywalls, but I hadn't seen them before. Thanks!

    I'm not sure how much NO in the skin would help with CBS problems, even assuming that CBS overactivity is problematic (I think it likely is not). If you look at biogps, you'll see that CBS is mostly expressed in the liver. NO exerts its effect locally, I think because it doesn't get far without being oxidized. To get an idea of how local this is, think of how local the vasodilation is for an erection. So most of the NO produced in the skin won't make it to the liver. Maybe it would have an effect on the little bit of CBS that exists outside of the liver...

    On the other hand, the research on NO as a possible mechanism for regulating CBS is fascinating. I've heard arguments both that we have too much NO (Martin Pall) and that we have not enough. I think this article discusses the confusion.

    If the problem is that we have insufficient NO then I suppose excessive CBS activity is still on the table. Although to some degree this would make sense as a feedback mechanism, since increased CBS activity could lead to increased glutathione production, which would quench superoxide, which otherwise would combine with NO to form peroxynitrite (ONOO). So increased glutathione should mean a little more NO and a little less ONOO, which should normally form a self-correcting feedback loop.

    The Jack Kruse stuff is interesting...and I don't understand it all. Unfortunately, something about his writing makes me skeptical. Again, because I can't 100% follow I can't point out any one place he is wrong. But he at least seems to use language in an imprecise way, like when he says "What creates electron spin? MITOCHONDRIA." Just by googling I see that electron spin is an intrinsic property of electrons, so I think that what he said is like saying "What creates water temperature? THE FURNACE." (No it doesn't, a furnace creates heat.)
    Last edited: Mar 12, 2017
    xena and Basilico like this.
  9. Tunguska

    Tunguska Senior Member

    @aaron_c I'm similar to you in that oral D is useless while sunlight is very helpful sometimes was essential for things to work (I still have to get a UVB light, thanks for reminding me! I used other lights for awhile to small effect).

    But I was/am very sensitive to NO and increased NO got to be clearly the major effect I got from sunlight - a positive effect. Makes it hard to discern anything else.

    It doesn't stop at Jack Kruse, there are more ideas out there and you start to wonder if Vitamin D even matters (I know, it does).
    aaron_c likes this.
  10. Sandman00747

    Sandman00747 Senior Member

    United States, Kansas
    aaron_c likes this.
  11. aaron_c

    aaron_c Senior Member

    Can you describe how you can tell when you have low and high NO?
  12. Tunguska

    Tunguska Senior Member

    Increased NO is/was, in short: Increased blood flow, relaxation of muscles, joint relief, and (this no longer happens reliably) lessening of brain fog, mental clarity.

    The same effect (for a given point in time) as GPLC, progesterone, arginine, etc.
  13. aaron_c

    aaron_c Senior Member

    If sunlight is producing NO in the way I described in the link above (vitamin d reducing ADMA levels so NOS is more often coupled) then one of the benefits would be increased NO and decreased ONOO, and that should occur throughout the body.

    So maybe these explanations aren't fundamentally in conflict.
    Tunguska likes this.

See more popular forum discussions.

Share This Page