[Esofia]

For anyone who doesn't know, the acronyms all refer interchangeably to the same medical condition (or possibly group of conditions, research is still poor in this are). The names vary according to country, year, and medical politics. In the UK, ME is the term most preferred by patients, and doctors are generally still stuck on CFS (which is a bit too vague and implies that all that is wrong with us is that we get tired a bit). In the US, CFIDS is the most common term, as far as I'm aware. If you're not familiar with this condition, CFIDS is the easiest one to Google. There are still people out there who claim that it's not a real medical condition, but it's been formally recognised by the WHO and similar for decades now. It's one of the most disabling conditions in existence and there's very little support available to people with it.

I know we have a lot of folks here with fibromyalgia, but while fibro and CFIDS overlap and are often present together, most medical thinking categorises them separately. They certainly seem to be very different when it comes to recommended exercise levels, not to mention pain (which can have quite an impact on dieting and exercise). So I thought it would be nice to have a thread for the people who specifically have CFIDS/ME.

I developed ME in 1997, when I was in my first year of university. Between the pressure we all get to overdo it, and being naturally a very busy and highly motivated person, I kept on trying to do too much and ended up giving up on my degree after eight years of trying. I've been in the severe category for several years now. I rarely leave the flat, have to spend a fair amount of each day in bed, and occasionally get spells where I can barely get out of bed at all.

I was slim as a youngster, and gradually put on a small amount of weight once I got ill. Then about five years ago, I randomly put on quite a lot of weight fairly fast for no apparent reason, and have put on more since. I think that chaotic sleeping and eating patterns were part of this, as well as the obvious problem with exercising. I eventually managed to sort out most of my sleeping problems, and between that and living with my partner, got onto a better routine for eating and so forth as well. I was still ravenously hungry, though, and sank into bad habits such as grazing, eating after a nap (I wake up hungry, but it doesn't really last long), eating too late, and eating in bed even when I didn't really need to.

Seven weeks ago, I was put on low-dose amitriptyline for pain, and my appetite suddenly shrank in the most gratifying way. Once I realised it was real, I decided to take it as an opportunity to lose weight at last. After a week of vaguely reducing portion sizes, I joined FitDay and discovered that calorie counting is relatively easy, and fun where I expected it to be miserable. I waited a month to be sure that I was getting somewhere before ordering the scales, so I've only been weighing myself for a few days, but I think I've lost 5lb in the six weeks that I've been doing this, and I'm thrilled!

Common problems with ME/CFIDS

* Lack of exercise, unsurprisingly. I subscribe to the view that you should estimate how much you think you're capable of and then do about 50% of that. My natural tendency is to over-exert myself, and I have to be strict about pacing. I've actually started a very cautious exercise programme, using FitDay and a separate symptom diary to make sure that I pace myself properly. Right now I'm doing 2 min on the exercise bike, 1 min using one of those abdominal roller thingies (the physio says it's ideal, it's low-impact and basically gentle stretching), and 1-3 min of skin brushing. Tracking my activities by calorie expenditure is making me realise that in the grand scheme of things, these don't use up that much energy, and I'll actually exhaust myself more by, say, spending half an hour marking a pattern onto a quilt top while standing. Which is great, because I'm paying more attention to the activities I'd not really taken into consideration much. So if I do something more tiring like that, and the next day I wake up particularly achy, I skip the exercising for that day and reintroduce it very slowly afterwards.

I know that I'm never going to be able to exercise enough to lose weight from it; that's hard even if you're healthy. However, I'm hoping to improve my muscles a bit, and it gives me a few more calories to play with every day, even if it's only enough for a very small snack. One thing I'm having to watch is when I start wanting to exercise more, especially when everyone on the diet forums is talking about their exercise routine. Working myself into a relapse won't help anything.

* Screwy metabolism. I don't know whether this is the case or not, but I've had doctors suggesting it to me in the past, and I've heard it said on ME forums a few times. It could be why people with ME tend to gain weight, although I think a lot of that is from inactivity and the total lack of decent support in this area. Doctors either want to put you onto the sort of graded exercise regime which will seriously exacerbate your illness, or they don't want to talk about it at all, in my experience.

* Poor routines. I think this was one of my major problems. I'm sticking strictly to regular mealtimes now, and so far it's actually helping. If I were to go through a stage where I was sleeping a huge amount, which I remember someone in this forum mentioning, or sleeping madly irregular hours, it could get harder. I don't think the Intermittent Fasting method is a good idea for us generally, energy levels too low etc., but it could be a useful way to tackle those times when your sleeping hours are all over the shop.

* Pain, nausea and other things which interfere with eating. Right now I'm not getting that much, and when I do I'm tackling it with meds and going for foods which are easier to eat when you're queasy.

* Calculating calorie requirements. I'm finding that most calorie calculators are assuming a much greater level of activity even at the most sedentary level. FitDay thankfully has a more customisable approach, where you can set your basic metabolism to reflect your real hours of sleeping, lying in bed and so forth, and it even has personal care and such listed as activities. (The activities list is quite crazy overall, but it has its moments.) Are there other websites or software out there which people have found useful?

* Working out what's a sensible diet to follow, and how macronutrients should be divided. I'm already eating a wholefoods diet, and I'm vegan, so I didn't feel the need to follow any of the formal diets out there which are mostly unsuitable for me anyway. I'm just doing calorie counting, healthy eating, and trying to stick to porridge for breakfast, plus soup and/or salad for lunch.

Macros are a bit trickier, everyone has a different opinion on them. I've been having a nice chat with someone helpful in the calorie counting forum (erm, can't remember her name) who's been posting excerpts from various reliable sources. It looks like my macros are probably OK as a general thing. I've heard that folks with ME should probably be getting extra protein: any opinions on this? I've started adding a bit of protein powder to the morning porridge as a result.

* Memory problems - forgetting the time, skipping meals, accidentally eating extra meals. I'm finding that tracking works well to counter this, but of course this means that the computer has to be available and on every time I eat. Since I'm at home all the time, it is, but that could get tricky for someone more active. Mind you, if you're out of the house enough to be eating out a lot, your ME isn't as bad to begin with, so hopefully your memory isn't as bad either. Anyway, tracking is a total lifesaver, but I still find that I make mistakes due to poor concentration. I was staring at the screen for days before I worked out that I'd accidentally multiplied the fat in my pasta by ten and that was why it thought I was having such a high-fat diet. I'm also having trouble working out how much food to buy and keeping track of when it needs to be used up and what's in the fridge. I just opened a packet of spinach we bought a few days ago, and realised that I should have opened it immediately. It lasts, but it has that plasticky sealed-in-the-bag-too-long taste.

* Difficulty making meals. Thankfully I'm going through a reasonably good patch right now, so I'm managing to cook a bit, and the support workers help too. The soup/salad thing is great, a support worker helps me make up a big batch of soup every now and again and we freeze portions. If I'm not eating a soup we've made and frozen, I make myself some miso soup with rice, tofu and veg. Bit more preparation involved there, but again it's fairly minimal, and I could always cheat with frozen veg if I wanted to. Porridge for breakfast is a bit more work than cereal, so I keep cereal for the really tired days. The thing that bugs me is cleaning the porridge pan afterwards. That stuff sticks like mad, and my little pan has rivets on the inside which are a nightmare to clean, so I'm looking thoughtfully at enamelled steel milk pans.

* Supplements and meds. Some people are on meds which cause weight/appetite increase, which is not fun. Thankfully I'm not right now, but if the amitriptyline doesn't work they want to try me on gabapentin, which has a strong reputation for causing weight gain. Which my local GPs claim they've never heard of or encountered, arggh, but I don't really want to be playing with anti-epileptics anyway, if I can help it.

Supplement-wise, I'm on a good all-round multivitamin, 200mg magnesium, calcium/vitamin D (by prescription - all this staying indoors has caused vitamin D deficiency), and 2g echium oil (best veggie alternative to fish oil, good reputation for ME). I originally started the echium oil at 4g, and then moved it down after about a year. It costs a bomb. I'm starting to experiment with starflower (borage) oil too, and I'm hoping that eventually I might be able to do something like 1.5g echium and 0.5g starflower, which will at least be cheaper. Right now I'm going for 4g total, I think my hormones and such could do with the boost. It means that my calories and fat go up a smidgen, but nothing I don't have space for, and I'm on a relatively low-fat diet anyway.

I'm also taking 1g ginger capsules to help with the chilliness which I gather is common with dieting, and it's meant to be good for digestion and pain relief too. I'm not sleeping too well on the amitriptyline (yes, I know, most people sleep better on it, but then I'm lucky that I'm getting a lower appetite instead of the more common raised appetite), so I'm taking valerian at night as well.

* Digestion problems. Let's face it, most of us develop them sooner or later.

One of the things which has surprised me about dieting is that I'm feeling a bit more energetic on it. I must have been overeating more than I knew, and I was definitely courting indigestion with some of my bad habits. My digestion is certainly happier about the whole business. The ginger may well be helping as well. By the way, I naively thought that ginger tincture would taste OK and would make a nice drink if I put a dose into my morning water bottle. It doesn't, it tastes vile like all tinctures. Capsules are the way to go, I reckon.

I think that's it for me, sorry for writing such a long essay! I'm eager to hear from other people in whatever level of detail you like. I've got the eye problems common with ME, by the way, so I'd appreciate it if people could refrain from altering the native formatting of text or using moving graphics.

[Esofia]

Short question, nothing like that huge essay I wrote the other day. Folks with ME/CFIDS, how do you eat on particularly relapsy days? When you're well enough to choose what you eat, of course, I don't just mean the obvious point that sometimes it's a victory to get to the kitchen at all. I've had to overdo it a bit this week, I'm exhausted and cold and achy, and as well as skipping my tiny exercise routine until I'm back to normal, I'm wondering if there's any way I can tweak my diet to help with the recovery process, without going over my usual calorie allowance. More protein? More fat?