It seems like every few months there’s a new miracle cure for ME, or there was at one point. They do seem to have calmed down a bit over the past few years or maybe I’ve just given up looking. Anyway, years ago, when I had my original official diagnosis so that’s ten years ago, the ME specialist I was seeing recommended some supplements for me to try. Over the years I’ve tried various versions of them and I think some of them do seem to help, though it may all be psychological if they have a positive effect then I’m happy to keep trying them. This post is going to be about these supplements; the ones I’ve tried and whether they worked or not and why.
Before I start this post properly I feel like I should include the standard disclaimer, that I am in no way a medical expert or professional and these are merely suggestions and things to consider. Also definitely consult your GP or doctor about any supplements you might want to try, especially if you’re on medication as you never know what could clash and cause problems. I know that some of my medication can’t be taken the same the as certain supplements so it’s worth checking. Also I’m not saying that supplements are definitely the way to go but they might be worth considering or asking about.
I’m also including a couple of links for each of them but it’s worth doing your own research if you’re considering trying any of them so you can see if they’re likely to have any benefits. For example if you already eat a lot of oranges vitamin C is unlikely to be something you’d get much from.
There are a few of these and they do have other names I’ve seen more regularly in foods claiming to be healthy but I’ll group them all together. These mainly have an effect on energy levels by improving the body’s absorption of the energy or storage of it and improves the health of your nervous system as well as the individual Ines having various other benefits. The main one for ME is the energy release as a lot of ME patients apparently have trouble converting the energy in the food to useful energy for the body.
I would say that vitamin B seems to be one of those supplements that has had a positive effect on a lot of people I have known over the years with ME. However, I took them for a month or two and it definitely did not have the effect I wanted as it kept me awake at night. I am going to be giving these another go in a small dose in a multivitamin so I’m crossing my fingers it doesn’t happen again.
Some of these can cause problems if you have too much so it’s worth checking with a doctor. The NHS has a list of the different foods that contain each so it may be easier to just increase your intake if certain food types first.
Information on the various B vitamins and their names from the NHS website
This is probably well known for a lot of people but vitamin C helps your immune system. It is easy to find these supplements as they’ve been a staple for years and a lot of people recommend taking them when you have a cold as they give your body a boost. They can also be found in oranges and other citrus fruit, I think most oranges contain your daily recommended amount so if you love oranges then this is probably unnecessary for you. I was surprised to find that potatoes are also a good source of it along with quite a few other fruits so this may be an unnecessary supplement. This is one of those vitamins where there are side effects if you take too much but, when looking at supplements, the amount given as too much is quite a way over the amount in the ones I saw that we easily available in the UK.
You naturally get this from the sun so, obviously, if you’re indoors a lot or bed or housebound then you probably won’t be getting enough of it. According to some websites people in the U.K. in general don’t get enough due to our weather so it seems to be a problem for healthy people too. I was also surprised to find, in researching this blog post, that it’s actually recommended on the NHS for healthy people to take a low dose of Vitamin D regularly, though maybe not in the summer it means if your housebound then taking it throughout the year will help. Vitamin D is used by your body to help you to regulate the amount of calcium and phosphate your body absorbs and uses.
I have been taking vitamin D for years, though it’s been in a calcium supplement along with vitamin K as it was recommended by my dentist rather than an ME specialist (the calcium, not the vitamin D).
Omega 3, 6 and 9 Fish Oils (EPA and DHA)
There are so many fish oil remedies out there that it’s important to know that the one I was recommended was the EPA fish oils, I can’t remember the exact brand but there was one that focussed on that specific aspect of fish oil. However the standard ones from health shops, or Boots, have got EPA in them at a level I was recommended so I stick with these as they’re easier to get and cheaper. There is a difference between fish oils and cod liver oil, fish oil tends to Crome from other fish and contains more of the EPA and DHA which are the important parts according to the ME specialist.
The main benefits of fish oils when focusing on ME are the benefits for you joints and memory, as far as I can tell. They are believed to help with memory loss, so maybe reduce some of the brain fog, and reduce pain in joints. They do have other benefits such as reducing bad fats in your blood and possibly boosting the effects of anti-inflammatory and antidepressant drugs, though you’d have to research a bit for the evidence on those if you’re interested.
Web MD page on Omega 3 (EPA and DHA) and what it can be used to treat (there are some links to the pages that explain these better on there)
Co-Q10 is short for Co-Enzyme Q10 which our bodies produce naturally so it’s to host the amount your body makes. This is one of those things that, when I first was recommended this, wasn’t really known but has since become one of those buzz words or ingredients in all kinds of skin care products. The body produces it naturally and it helps with creating energy and fighting things that can damage cells. The energy is a great thing for ME but there are also claims that it can help with muscle pain. I don’t know how much of that is true but I do know that I don’t seem to get the same ‘I’ve run a marathon the day before’ feeling as often when I’ve done too much, or rather it doesn’t last as long and it’s more bearable so maybe there is something in it.
One thing I found with Co-Q10, when I first started taking it and it was probably a higher dose, is that it was one that kept me awake at night. However, recently I was taking it in a multivitamin which contained a small amount of it and it didn’t have that side effect. Unfortunately that was discontinued so I’ve got a supplement that contains both the fish oils and the Co-Q10 and this isn’t a problem. I think this is one of those supplements that there are multiple dose levels available and it would be a case of finding the right one for you if you decided to try it.
This page on Healthline says it’s about the use of Co-Q10 with statins but it includes information on Co-Q10 specifically
The first thing that I tried I’m not sure if it’s even considered a supplement, more a herbal remedy, was echinacea. It’s a plant extract available in various forms and doses, I was recommended the tincture because it’s very easy to alter the amount you use by changing the amount of drops. This is supposed to help your immune system and has become more main stream when dealing with colds and sore throats over recent years, I know a few people who swear by it who are otherwise healthy.
The one thing with echinacea is that over the years the recommended way you take this has changed. Originally it was recommended to take a certain dose (I’ve forgotten the amount but the doctor told me based on age and weight I think) every day of or two weeks, then two weeks off and then repeat the cycle. Recently it’s become more of a use it when you need it kind of herbal remedy so when you start to feel ill. I’ve also found that tinctures in general for this seem to have become a lot less readily available. You can get tablets and a liquid version that you dilute with water but they’re both very different from what I used to take.
I will say I took this for years in the original method before I stopped and it did seem to have a noticeable affect on how quickly I got over colds as, if you have a chronic illness, you ow how long things take to recover from compared to before you were ill. However I have also found that taking it when needed has the same effect without turning my teeth yellow (an unfortunate side effect of the tincture for me) or meaning I rely on taking it all the time.
If you are considering trying echinacea this is definitely one to consult your GP or ME specialist about as it’s one of the herbal remedies that’s listed as something to stop taking a while in advance of surgeries so obviously has an effect on the body more than a lot of supplements.
Web MD has a page with links to their articles on echinacea, there are quite a few depending on what you want to know
The NHS only has one page on this, looking at a study done in echinacea. It’s interesting if you like reading about studies but rather long and is just dissecting the articles and study.
I think that covered everything I have been recommended specifically for ME. Sorry if it turned into a bit of a wall of text, I’ve made the actual supplements bold so you can skip the rest and just look at the links if you want a quicker read.
Are there any others you guys have been recommended? There are other supplements I’ve tried for various other health problems, or the fact that I just don’t eat much that contains them, but nothing ME wise. I know supplements aren’t for everyone but I thought it’s interesting to know about what people have been told and different ideas on treatments in different places. Plus these are easy to find and if you check with your GP they might find something on it that you didn’t know or it could lead into trying something new that works for you.
I hope you’re all as well as possible and having a good 2017 so far.