Dietary Advice

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Hi, does anyone have any dietary advice for ME/CFS sufferers? Anything you find that makes you feel worse or better?

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  • Posted

    Especially in the beginning of the illnes,I found that high protein meals, and protein every 2 hours or so, helped. Meals high in carbs like pasta and other heavy foods made me feel worse. Also, sugar, coffee, and chocolate made me feel worse. I also take digestive enzymes.
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  • Posted

    Hi,

    my husband has had ME since 1989.  We found that eliminating preservatives and additives from food made a considerable difference.  I went back to basic cooking and  do not buy any ready made meals or sauces.    I have now had ME myself for two years. As I have already eliminated additives from my diet, I had to try and find out what else affected my.  I have found that refined sugar, alcohol, tea and coffee are not good for me.  But we are all different.  A good idea is to keep a food diary, and note what you have been eating when you feel good, and when you feel bad. 

     

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    • Posted

      When I hear stories like yours, it does scare me a bit. Your husband had ME and now you have it! So you must have gotten it from him...right? I'm sure this can only happen if you have a genetic predisposition for CFS/ME, but who knows is they have this tendency until they get the illness? I know there are clusters of people who's gotten the illness in the U.S., which would seem to indicate that it can be contagious. 
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    • Posted

      Hi Jackie,  sorry to beso long replying to this, I have been without internet.

      Your reply to my post made me smile.  I a had gotten it from my husband,  it would have meant a twenty year incubation period!  I had suffered from post viral fatique over the years, but it never lasted more than 3 months, and this was during the time that I had to be carer for my husband.  This time it was different.  I am still asking myself questions, and thinking about how it might have been different this time.  The main difference was that I was very busy, and possibly did not give myself adequate rest at the start of it.  I wondered if it might have been due to stress, as suggested on other posts,  but when I had the post viral I was looking after a severely incapacitated husband who could not tolerate noise and a lively six year old.  That was 25 years ago, so can't exactly remember but reckion that must have been stressful.  

      It seems from the many posts that we all experience different symptoms as well as the ones we seem to shre.  I wonder if we actually have different ailments.  My Dr has never tested for anything else, just given it the name of chronic fatigue to start with and changed it to ME when it lasted more than a year.  I know that ME is a real ailment, having nursed my husband back to recovery (he can now do so much more but does have to pace and rest)  and also by the struggle that I am now having with it.  But I think the Drs use it as a convenient label if they don't know what you have. 

      Having had whatever it is for two years,  I was gradually beginning to be able to do more,  and some days felt really good.  The only problem at the moment is that I have let adrelalin have its way and over done,  I feel so ill again and do not have any energy.  Oh well.  down the snake,  now to look for a short ladder that will not take much climbing.

       

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    • Posted

      Hi, Pat. I've been reading ME/CFS forums over many years, and the same cluster of symptoms appears over and over. So I'm convinced that this is one illness and not several. I believe it's a virus that attacks the brain and central nervous system, and different symptoms result from the area of brain it attacks. Of course this is just my humble opinion. 
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    • Posted

      Hi Jackie,   I think I have answered this on another link.  (Brain fog)

      Sounds like you have a bit more knowledge about it than me.  It does sound like it is the same illness, even though it affects us differently as well as in the similarities.    I wonder if it is not only the area of the brain, but our different metabolisms that cause this.  When my husband had it,  he had also had encephalitis 10 months previously, caused by catching the worst case of chicken pox that I have ever seen.  

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  • Posted

    Hi Nacho

    I have ME/CFS and cannot tolerate caffeine so drink decaf tea and coffee readily available in stores and lots of cafes now! Also fizzy drinks not good! so stick to filtered water with a little vimto cordial added!

    Chocolate made me very ill and I no longer eat it, apparently it is high in copper and I have too much copper in my body due to my metabolism being messed up, which can be a problem for many me/cfs sufferers.

    I have cut down my intake of sugar which was very high as  I was using it as a way of getting a quick energy boost!

    I have done a modified version of the Stone Age diet because it is a big change to make all at once.  So I have cut down on bread and pasta and cakessad and eat steamed fish and chicken and veg.

    Hope this helps?!

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  • Posted

    Hi everyone, thanks for all your replies. It's really helpful, and lowering my carbs does make sense as that's my biggest downfall. I think high protein and low carb meals are a good idea for me to start off with. Can I also ask how you all found out what has an adverse effect on you? Was it just a case of trial and error?
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  • Posted

    I am on a gluten free diet as I am allergic to wheat. Also I am using the 'fodmap' diet (you can find it on the website) The reason for this is that I don't digest food properly I have low transit constipation.
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    • Posted

      I'll give it a go, thanks for advice. I really don't know what I would do without this forum. It is so good being in contact with other sufferers, but I really wish there weren't any at all and that this illness could be done away with.

      Thanks to whoever did this for sorting out the problems with the scrolling down and being able to write and see what is written straight away. Brilliant

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  • Posted

    hello, i have been on a healthy low fat diet for ages now, all i can say is, eat low fat and healthy, fibre is good, fruit and veg, lean proteins, pasta, fish hope this helps
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