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 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.
Despite blood tests all normal for vitamins and iron as usual with ME I spend £130 a month and am no better for it after several months and can no longer afford to pay this because all my savings are gone . Sure there are many other people out there desperate to get better doing the same and it seems we are wasting our money . Should have tried the Snake Oil ! On top of that pay for Perrin massage and spent £730 so far been been 4 months no change I will have to give up this hope for getting better too. Just can’t afford it. No NHS ME clinic service in my area just fighting this battle alone .
Twenty years ago I was spending over £60 every month on various preparations including CoQ10 looking for something to dig me out of the abyss. A Chinese medicine clinic opened up locally and after three months went along for a review. The practitioner advised that a certain preparation would help and he went to his recipe book and made up a two week supply of ‘tea’ which required boiling in a saucepan. It tasted foul and smelt worse. After 4 months, and around £400/£500 later I was no better so he said (honestly) he couldn’t help. So, I stopped my spending- totally except for paracetamol. What I did not know until I moved to a different county and had a thorough examination as an incoming ‘new’ patient to a great practice, was that these teas had been toxic and had completely ruined my already compromised kidneys. The renal consultant told me he had seen three other ME patients that year from other counties who had likewise tried this self help path to rid ME and likewise lost their kidney function.
I was lucky my wife gave me a second chance by donating one of her kidneys. I totally rejected the transplant and the hospital threw everything at the situation including completely removing every white blood cell from my body 5 times over ten days which ought to have meant (by some clinicians) the ME would been eradicated. I still have it, and my diary for the last two years proves some days can be as rough as when I became ill thirty years ago. There is no over the counter fix for this condition, but if something you buy helps, that’s fine. Meanwhile we will just have to wait until science gives us a break.
Thanks Tiredboy for telling us your story. It’s good to see you still about.
We were totally blown away by that inspiring young man, Tom H, and what he did for us last year.
All best, Tony at the MEA.