Saturday, 17 August 2013

Feeding the mitochondria in ME CFS

Dear Blog...where do I start?  This condition, illness, disease, whatever you want to call it is sooooo frustrating.  I've had two brilliant weeks away on holiday and was hoping to come home completely refreshed and with some energy banked.
  It just hasn't happened.  At the moment I find myself with just enough energy to plod through my day and on days like today, even that is an effort.
I find myself thinking of a passage from Alex Howards book "Why Me?"  How much time am I actually spending in my day working towards getting better?  The answer for me is, some.  I'm taking all my supplements and doing all my Perrin massages, I try and eat well, I abstain from alcohol and caffeine, I'm trying elements of Buteyko breathing techniques and meditating (not as often as I used to). I'm even trying to do some exercise at the Hydrotherapy pool and yoga at the Therapy Centre.  But, as you start to feel a bit better it is easy to let some of the things that have helped you get to this point slip a little or to become complacent.  I feel it is time for me to refocus my efforts and my attentions.  I think I am 80% well and I desperately want to find that next 20%.
So, today I have ordered a book by Dr Terry Wahls - Minding My Mitochondria  it will be the next thing for me to try alongside everything else.  I have watched  some of Dr Wahls you tube videos and found them very interesting.  I know from Dr Myhills testing that my mitochondria are damaged,  not working properly and the cell linings are damaged so I'm going to spend some time feeding my mitochondria and re-reading things that I may have forgotten and that might help.


  1. Hi Beauts,
    I just found your blog when I was searching for information on activity monitors, like Fitbit, and their use by people with CFS/ME. I hope you don't mind me contacting you this way. I have moderately severe CFS/ME and a low functioning level. I'm curious about the Fitbit and wonder if it would be any good monitoring my up and down activity and walking around. Did it monitor anything when you were moving slowly around the V&A back in January?

    I'm just starting to look at monitors. Some look like they only monitor/count steps, etc. when you are stepping lively/aerobically for a certain amount of time (ie, 10 minutes). I'd like to be able to measure all my little up and moving periods and see what they add up to. This may only be 32 steps or so at a time back and forth to the kitchen or bathroom. Does it record anything when you are up and down, bending over and doing things like picking things up off the floor or tending to the dog?

    Some days I'm more active when I have to go out and grocery shop, do errands, etc. About every other day, I'm out walking around the garden watering and doing tiny gardening tasks for 5-20 minutes. Would it record any of that? In your experience with the Fitbit, will it monitor low, brief levels of activity? Are you still using yours?

    I was very excited to see you mention Dr. Myhill and Dr. Wahls. I have started a very low carbohydrate (from veggies)and high meat protein diet similar to Dr. Myhill's Stone Age diet. I say similar because I am still consuming small amounts of dairy (cream in couple of cups of my coffee per day and a small amount of cheese.). I'm using Dr. Atkin's diet so far because I can make it like Dr. Myhill's, but I have more structure and also have support from other people using it (ie, support groups on Facebook) to help me stay motivated and overcome problems along the way. Have you tried Dr. Myhill's diet plan or any other similar ones? I, too just found Dr. Wahl's website and videos on YouTube. Her results are very exciting, aren't they? I haven't ordered her book yet.

    Thank you for your time and I wish you the best of luck. I'm going be reading more of your blog over the next few days. It's nice to 'meet' people dealing with similar issues.


    1. Hi Katy
      Yes, my fitbit does record all low levels of activity. when I start moving it might not trigger until 3 or 4 steps into my movement but it then seems to catch up and add those first few steps on.
      I love my fitbit and wear it every day it gives me an easy indicator of how much I've done at any point during the day. Whereas when I was manually trying to monitor activity it was a nuisance to try and note it as I went along and then not very acurate if I left it until the end of the day and tried to remember so it's been brilliant from that point of view.
      I have the Fitbit Ultra which has been replaced by the Fitbit One now I think. I like it because it monitors steps but when I connect to the PC it will also tell me about how much time I've spent sedentary, lightly active, fairly active or very active. So, all those little activities that you are talking about - tending to the dog and picking things up do seem to get taken into account too. They now do a Fitbit Flex which I think monitors "activity" rather than steps and gives you an activity score, so, a bit different to mine, but just as useful I suppose giving you a score that you can use to monitor yourself with and compare with previous days etc.
      I did Dr Myhills Stone Age diet for 4 months rigidly when I was first in contact with her, but didn't find that the dietry changes made any difference to my bowel symptoms. I dont think I have any food intolerances. So, I gradually eased off on the stone age diet and reintroduced some dairy and sugar. I still dont have very much wheat and absolutly no alcohol or caffeine of any sort (including chocolate!). Of all those things I think the reintroduction of refined sugar has probably not been a good thing. My body does feel different when I'm not eating processed sugars, so I am glad to be trying Dr Wahls eating regime. The main difference I see so far between Dr Myhill's and Dr Wahl's diet is the emphasis on the volumes of fruit and veg that Dr Wahls makes, especially the green veg. I'm enjoying reading the book, it explains some of the bio chemistry in a very readable way and there are lots of recipes in the back. Anyway, i'll keep blogging about how that's going. Good luck with your monitor shopping, let me know how you get on.