This relapse has got me looking into dietary supplements again, partly spurred on by the ME Association pamphlets on them. These make reference to some scientific studies but they appear quite out of date (old references). Whilst looking for papers that might report on more recent studies I happened across these two papers. Each is a survey of studies over a number of years that collates results and draws conclusions. I thought they might be of interest to others, and that perhaps a thread that contained references to, and discussion on, studies on supplements might be of use. The overall conclusion is that there is no definitive benefit from supplementation, however the details of the some studies (accepting limitations in sample size etc) are interesting. "Role of dietary modification in alleviating chronic fatigue syndrome symptoms: A systematic review" - Kathryn Jones University of Wollongong "Conclusions: Overall the evidence displayed inconsistent results across data themes which emerged, with only limited dietary modifications shown to be useful in alleviating symptoms of CFS. The evidence base included many studies of lower levels of evidence according to the National Health and Medical Research Council. At present, effective dietary changes have not yet been substantiated within this review, including effective communication and implementation of dietary interventions tailored to meet the needs of the CFS population. Individualized clinical recommendations still need to focus on evidence-based advice and dietary counselling, alongside general promotion of healthy eating habits across all medically tolerable food groups in order to also reduce other chronic disease risks and avoid development of deficiencies. Overall further research surrounding the research question and data themes presented in this review is needed. It is hoped that further research will focus on strengthening the level of evidence contributing to future research in this area in order to clarify and consolidate recommendations as well as ensure the distribution of accurate and useful information at a population level." "Dietary and nutrition interventions for the therapeutic treatment of chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review" - Campagnolo "Conclusions: This review identified insufficient evidence for the use of nutritional supplements and elimination or modified diets to relieve CFS/ ME symptoms. Studies were limited by the number of studies investigating the interventions, small sample sizes, study duration, variety of instruments used, and studies not reporting dietary intake method. Further research is warranted in homogeneous CFS/ME populations."
I think that the reason for the inconclusive findings is that different people with M.E./CFS benefit from different things, including different supplements, and that needs also change over time, as I have found.
I've taken many 'big promise' supplements in the past, but the only ones that I felt helped were the ones I was deficient in.
It’s so difficult to know if a supplement is making any difference to me. I think I’m fairly sure magnesium helps as I’ve run out a couple of times and not realised and then after 2 or 3 days wondered why I was aching more. But changes could be for many other reasons related to activity levels whether the weather is cold or hot what food I’ve been eating/not eating. I think I’m more foggy when I don’t take Omega 3 but who knows.
I only benefited in bringing my B12 and potassium up to normal for blood tests and D3 w/ K2 helped with some pain resulting in the D deficiency. But, high levels of a good brand of fish oil helped me be able to read again as I couldn't get through even a paragraph of information.
I've spent thousands of $$$$$ on the various vitamin and mineral supplements over the years and nothing has helped my ME at all. I've had Naturopaths prescribe vitamin therapy, and there again, nothing made any difference. My conclusion - ME isn't a vitamin and/or mineral deficiency.
I've had quite a few supplements produce temporary results over the years, but they almost always stop working. I don't believe it's placebo because it doesn't happen with every supplement. I also don't believe those supplements provide my body something that it's "missing" or that they would work as treatment; if that was the case the effect should be permanent. What I hypothesize is that that certain supplements are temporarily skewing my immune system and metabolism towards a direction in where I feel less sick, but eventually the body will restore back the homeostasis and the illness state.
There are relatively few illnesses for which nutritional supplements have been shown to be of any significant benefit so is there any good reason to expect that supplements for ME should be effective ?
For my daughter the following have impact Magnesium makes a significant difference . If not taken fatigue, pain, brain fog increase. CQ10 as ubiquinol Antioxidant My aunt is severely affected and had huge issues with heart palpitations, which significantly reduced after injecting magnesium Note she is unusual in that her body reacts ( and always has done) to B12 as if it was poisonous - instant dizziness / faint ( on one occasion temporary loss of sight for 20 mins) , sickness & diahorrea. Noone can offer any explanation for this.
The only longterm supplement I've used (am using) is Vit D as the GP blood tests showed I was deficient. At my level of supplementation I'm now in the expected range. I was interested in the ME Association advice on supplements, and whether research had built on that at all. Particularly with Ubiquinol and L-Carnitine. There I'm trying the latter at the moment, but with no obvious benefits.
B12 injectables also made me dizzy/faint, but I'm ok taking B12 supplements. Magnesium IM was truly a life saver for me years ago. I was severely deficient.
Magnesium definitely helps with sleep. I took it while going through perimenopause and I slept really well. The only problem was that I was sleeping really well all day long, also. I had to stop after six weeks because I got to the point where I couldn't think anymore. When you stand staring at a door for a few minutes because you can't remember what to do with the key, there is a problem.
Perhaps it can cause vitamin and/or mineral deficiencies. I have tested low for potassium and B12, and find supplementing them helpful. I have not tested ubiquinol (I don't know that you can), but I also find it helpful.
Anecdotal info about things that have helped me with various symptoms : Cramp I used to suffer from severe cramp in my feet and lower legs a lot, but have managed to fix it. I rarely get cramp these days : 1) Salt - I drink a mug of this when I get warnings of incipient cramp : https://www.tesco.com/groceries/en-GB/products/255956181 2) Magnesium citrate - I take the dose given on the packaging/bottle every night. This supplement helps with a lot of issues as well as helping to reduce cramp. 3) Potassium - I take half the dose mentioned on the bottle, and if I'm still suffering with cramp 20 minutes later I take the other half. I don't like taking potassium unless necessary because it irritates my stomach. Restless Legs I also used to get restless legs. The above things I mention for cramp sometimes helps restless legs as well. However, to get rid of the problem almost completely I have to keep my iron levels as close to optimal as I can. I use private testing and also buy my own supplements. Mouth Ulcers & Eczema I have found that both the above are reduced (but not completely eliminated) by the following : 1) Methylcobalamin 2) Methylfolate I keep my levels of vitamin B12 very high by choice, but I have problems keeping my levels of folate off the bottom of the range despite supplementing, I don't know why. I would like to keep my folate levels in the upper half of the reference range - if I can. If I allow my B12 to drop much the eczema and mouth ulcers come back severely. I intersperse supplementing the B12 and folate with taking a B Complex. For general aches and pains in muscles Vitamin D3 - I try to keep it optimal - neither too low or too high, so I only supplement about 3 times a week, depending on the dose. I use private testing to monitor it. For non-specific reasons I take Co-Q10 every day. It makes me feel better generally. I have other symptoms that I've never found any supplement to help with, despite experimenting on myself a lot.
Ron Davis mentions supplements briefly in a panel session at this timeline, but he was rather (or completely) cryptic about the details...
