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MEA website survey: Vitamins, minerals and supplements (May 2017)

Discussion in 'General ME/CFS Discussion' started by charles shepherd, May 3, 2017.

  1. charles shepherd

    charles shepherd Senior Member

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    MEA website survey: Vitamins, minerals and supplements (May 2017)

    This month's MEA website survey is asking about your expenditure on vitamins, minerals and supplements:
    Why are we asking this question?

    http://www.meassociation.org.uk/201...-and-health-supplements-per-month-3-may-2017/

    Current voting:

    • How much do you currently spend on vitamins, minerals and health supplements per month?
      • Nothing (21%, 3 Votes)

      • Up to £5 (21%, 3 Votes)

      • £6 to £10 (7%, 1 Votes)

      • £11 – £25 (21%, 3 Votes)

      • £26 – £50 (7%, 1 Votes)

      • £51 – £100 (14%, 2 Votes)

      • £101 – £250 (7%, 1 Votes)

      • Over £250 (0%, 0 Votes)

      • Don't know (0%, 0 Votes)


        Total Voters: 14

    Overseas votes are welcome in this survey if you are happy to convert your currency into £ sterling!

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Mary, Laelia, Aroa and 1 other person like this.
  2. charles shepherd

    charles shepherd Senior Member

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    Background info: Why are we asking this question?

    Firstly, because many people with ME/CFS believe that minerals, vitamins and supplements can be a helpful part of their management programme – despite the fact that there is no sound research evidence of deficiencies being present (with the exception of vitamin D) and no evidence from clinical trials to support their use. And in some cases this involves a considerable amount of expenditure as these products are not usually prescribed by doctors on the NHS.

    Lack of any research evidence to support the use of these products is confirmed in a new review of the literature on this subject, which was published in PLOSone on April 28. See abstract below.

    Secondly, because the MEA has asked Sue Luscombe, our professional adviser on diet and nutrition, along with research dietitian Michelle Dobrota-Gibbs, to prepare a new MEA booklet covering all aspects of diet, nutrition and supplement intake in ME/CFS.

    The new MEA booklet will summarise all the current research evidence on diet, nutrition and supplements and answer all the common questions that we receive on these topics.

    So if you have any points or questions that you feel are important in relation to any aspect of diet or nutrition in ME/CFS please let us have them within the next few weeks – so we can make sure that this new information booklet contains everything that people want to know on this very important aspect of management.

    Dr Charles Shepherd
    Hon Medical Adviser, ME Association


    ABSTRACT TAKEN FROM PLOSone, 28 April 2017
    Vitamin and mineral status in chronic fatigue syndrome and fibromyalgia syndrome: A systematic review and meta-analysis

    Monica L. Joustra(1) , Isidor Minovic(2), Karin A. M. Janssens(1), Stephan J. L. Bakker(2), Judith G. M. Rosmalen(1)
    1) Interdisciplinary Center Psychopathology and Emotion regulation, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands
    2) Department of Nephrology, University Medical Center Groningen, University of Groningen, Groningen, the Netherlands, Top Institute Food and Nutrition, Wageningen, the Netherlands

    Abstract

    BACKGROUND

    Many chronic fatigue syndrome (CFS) and fibromyalgia syndrome (FMS) patients (35–68%) use nutritional supplements, while it is unclear whether deficiencies in vitamins and minerals contribute to symptoms in these patients. Objectives were (1) to determine vitamin and mineral status in CFS and FMS patients as compared to healthy controls; (2) to investigate the association between vitamin and mineral status and clinical parameters, including symptom severity and quality of life; and (3) to determine the effect of supplementation on clinical parameters.

    METHODS

    The databases PubMed, EMBASE, Web of Knowledge, and PsycINFO were searched for eligible studies. Articles published from January 1st 1994 for CFS patients and 1990 for FMS patients till March 1st 2017 were included. Articles were included if the status of one or more vitamins or minerals were reported, or an intervention concerning vitamins or minerals was performed. Two reviewers independently extracted data and assessed the risk of bias.

    RESULTS

    A total of 5 RCTs and 40 observational studies were included in the qualitative synthesis, of which 27 studies were included in the meta-analyses. Circulating concentrations of vitamin E were lower in patients compared to controls (pooled standardized mean difference (SMD): -1.57, 95%CI: -3.09, -0.05; p = .042). However, this difference was not present when restricting the analyses to the subgroup of studies with high quality scores. Poor study quality and a substantial heterogeneity in most studies was found. No vitamins or minerals have been repeatedly or consistently linked to clinical parameters. In addition, RCTs testing supplements containing these vitamins and/or minerals did not result in clinical improvements.

    DISCUSSION

    Little evidence was found to support the hypothesis that vitamin and mineral deficiencies play a role in the pathophysiology of CFS and FMS, and that the use of supplements is effective in these patients.
     
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  3. charles shepherd

    charles shepherd Senior Member

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  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Personally, I find multivitamins make a BIG difference, most notably in the Winter
    oh not making me "non-housebound" but making quality of life, somewhat reduced pain, clearer head etc.

    ones I find work for me
    https://www.amazon.co.uk/Centrum-Ad...=UTF8&qid=1493814019&sr=1-2&keywords=vitamins

    https://www.amazon.co.uk/Vitamin-Me...14159&sr=1-1-spons&keywords=vitamin b12&psc=1

    since I am housebound, cannot make proper meals it would be logical to think that such would lead to lower levels of nutritional vitamins etc
    also take Vitamin D when can so need to get that again, hey Scotland has extreme problem with low Vitamin D due to the Sun being infrequent visitor ;)

    note after fights with DWP, nearly running out of all money, food brought in my friends etc, meant at times couldn't' afford vitamins, at such times, health definitely seemed worse even accounting for stress and improved when could afford them again (after getting PIP etc took me while ot get round to getting vitmains once more, so it wasn't merely a psychological thing it was definite improvement when I was already bit better with less stress after DWP was dealt with for a while)
     
  5. ChrisD

    ChrisD Senior Member

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    I find the wording and manner of this questionnaire or study to be quite odd, surely the reason that their is no clear evidence of the effectiveness of Vitamins and minerals in ME/CFS treatment is through lack of broad and in-depth research. Also the featured study is hung up on the idea of searching for deficiencies and treating them, rather than utilising higher doses of vitamins therapeutically.

    Part of me wants to take part in this questionnaire, but the other part is sceptical that it may be used a further fuel for the 'all-in-your-head' argument as supplement intake correlating with recovery could be speculated to be a placebo effect.

    It seems that the results will be used to create a resource that will be of little help to many who have already ventured down many paths of therapeutic nutrition treatment, can anyone ease my concern on such a survey?
     
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  6. Mij

    Mij Senior Member

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    I take/took vitamins and minerals based on deficiencies that I had. Despite eating a healthy diet years ago I wasn't absorbing them from food due to malabsorption and possibly a higher demand (?) for them due to stress(viral infections etc.) from chronic illness many years ago

    I only take the basics now, B-Right, vit D, fish oils, magnesium oil, Bone-up with MK-7 and occasional ubiquinol.
     
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  7. charles shepherd

    charles shepherd Senior Member

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    I can assure you that there is no sinister motive behind this MEA questionnaire and it is definitely not being used to support an 'all in the mind' model of ME/CFS causation

    It is simply there to find out how much people are spending on vitamins, minerals and supplements per month that are not normally prescribed on the NHS - mainly because there is currently no real evidence to support their use from either research into possible deficiencies or clinical trials to support the use of supplements

    Having said that I fully agree with you that the evidence base is very weak and many of the clinical trials that have been carried out are either too small or are defective in other ways

    And as we are dealing with a very heterogeneous condition, it is quite possible that there are sub-groups of people with ME/CFS who could benefit from this approach

    The MEA Ramsay Research Fund would be very happy to look at research grant applications in this area and I have recently been in discussion with a UK clinician regarding the possibility of funding research into vitamin B12 status in ME/CFS and the possibly of carrying out a clinical trial using Vitamin B12 injections as well

    On a personal note I answered 'nothing' - because I am not convinced that in our current state of knowledge it is sensible to be spending large amounts of money on vitamins, minerals and supplements……...

    CS
     
  8. charles shepherd

    charles shepherd Senior Member

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    If someone has a gastrointestinal disorder (such as inflammatory bowel disease) that causes malabsorption of essential nutrients then some form of supplementation would almost certainly be necessary

    However, it should be noted that there is no evidence that ME/CFS causes the type of gastrointestinal damage or inflammation that leads to malabsorption of minerals, vitamins and other essential nutrients

    CS
     
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  9. Mij

    Mij Senior Member

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    @charles shepherd

    I also wanted to add that B12 injection does help improve symptoms for some with M.E. Magnesium is a big one too. I took magnesium injections on and off for years and this was the most effective treatment for me where I actually felt an improvement in my overall health.

    I don't have FM but transdermal mg has a positive effect for FM pts too.
    https://www.ncbi.nlm.nih.gov/pubmed/26343101
     
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  10. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    I take what actually works for me - CoQ10, L-Carnitine and Vitamin D3, and ditch anything that appears to have no effect. The first two have had strong enough effects for my family to notice a difference and foot most of the bill for me! So I can't really say what I spend. Been on CoQ10 for a year now. Haven't bothered with supplements most of the time I've been ill (32 years).
     
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  11. Valentijn

    Valentijn Senior Member

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    I think focusing on "there's no evidence for use of these supplements in ME" is really missing the point. First, as mentioned above, there's a pretty substantial lack of evidence in the area, which is far from being proof that supplements are not effective.

    And additionally, there often is good evidence to support the use of certain supplements in treating symptoms which ME patients have - even if it wasn't specifically tested in ME patients. Magnesium has been shown to help non-ME patients with muscle twitches and cramps, for example. Why on earth would you automatically exclude that evidence from applying to ME patients who have muscle twitches or cramps?
     
    Last edited: May 3, 2017
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  12. Mary

    Mary Senior Member

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    There is no sound research evidence on nutritional supplements because clinical trials are sorely lacking - which came first, or, rather, didn't come first? Almost all studies I have looked at re nutritional supplements have a caveat that more research is needed. Yes, it is, and it's not going to happen any time soon because all the money goes to synthetic drugs.

    So to say there is no sound research and no evidence from clinical trials I think is a tautology (if I am using the term correctly!) - of course there is no evidence because the research is not being done.

    I've been helped enormously by several nutrients. I spend a lot (too much!) each month, but they keep me functioning at a higher level than 10 or even 5 years ago so are worth it to me. So I'm afraid when conclusions apparently are already drawn that it's a waste of money to buy nutritional supplements, I don't know how your pamphlet will be of use.

    I think a better survey would be to ask persons with ME/CFS what does help them.

    Here are things I will not be without:

    betaine HCL with pepsin - resolved malabsorption issues, which enable me to utilize nutrients
    d-ribose - noticeable increase in energy
    D3 - helps immune functioning
    B1 - increased energy
    B6 (P-5-P) - major deficiency found by Nutreval testing, increased energy
    Methylolate - increased energy
    potassium - helps with energy, otherwise have chronic potassium deficiency and accompanying fatigue, despite
    "normal" blood levels
    B12
    magnesium
    Carnitall (carnitine supplement)
    Adrenal glandular supplement
    5-htp - helps with sleep
    inositol - helps with sleep
    melatonin - helps with sleep
    Branch chain amino acids - cut PEM recovery time in half
    lecithin - improved memory and brain functioning

    It is extremely unfortunate that the experiences of individuals are not being taken into account here. I've been sick with ME/CFS for 19 years and cannot wait for "science" to start doing what it should be doing.

    And this actually scares me because you state above that there is no evidence for nutritional supplements, so I fear this forthcoming pamphlet will discourage persons from trying new things which may have been very beneficial for them. I believe I would be almost completely bedridden without the nutritional interventions I have done and am still doing.
     
    Last edited: May 3, 2017
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  13. ljimbo423

    ljimbo423 Senior Member

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    Ditto for me! 10 years ago I was on and had been on 6-8 different medications for cfs, for several years and my health continued to decline, until I was mostly bedridden. I slowly tapered off the meds and started to clean up my diet try different supps.

    It was then that I started to feel slightly improved and no longer spent most of my days in bed. I am quite certain that I would be mostly or completely bedridden if I stopped all my supps.

    I am functioning now quite well overall, compared to those days but that would be gone fast without supps. As has been said, supplements have benefits that go far beyond just meeting deficiency needs.
     
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