I gained 15-20 pounds when I first got sick, lost it (not on purpose), gained it with a hard life event, lost it a few years ago (again, not on purpose), and decades later, gained it with menopause.
I will say that it doesn't affect my SYMPTOMS, but it affects my endurance somewhat - the same amount that carrying a 10 pound backpack would. Not a 15-20 pound backpack, because of the way it's distributed, I guess.
Exactly this! Both on the fact that calorie restriction/going hungry is NOT good for us, and that losing excess pounds helps us with daily stamina/using fewer spoons to get around.
I gained 30lbs my first year with ME/CFS.
I lost those 30 lbs my second year, when I had a good recovery after learning to pace, taking supplement that helped, etc.
Unfortunately, that recovery didn’t last because I was still pushing myself and not listening to my body’s needs, plus my parents became very ill and I became their caregiver until they died, which was too much for me, and I gained 25lbs since that ensuing crash.
I can tell when walking up the stairs or up an incline that those extra pounds make it harder on me. It IS like carrying a heavy backpack, in a way, I remember how much easier it was to go up stairs when I lost weight in my first recovery.
I live on a second floor and just go up and down steps every day unless I am being homebound that day. Reducing the fatigue toll that the steps take on me is good. Reducing my weight helps reduce that toll.
I lost 10 lbs recently when I went to an eco-village in a jungle and ate their super-healthy vegan plus fish diet with organic veggies and suoerfood smoothies all the time. The reduced weight helped me feel that I had more stamina, because I was not carrying extra pounds on me.
Unfortunately, I have gained back 5 of those lbs since I came back to the USA. I might need to be more strict in terms of what I eat here. I felt great on that healthy diet.
But I do NOT do well on a calorie-restriction or fasting diet! Fasting seems to be too much stress on my body, and causes PEM. I will not harm my health by restricting my food intake like that. I also seem to need a lot of protein in my diet to feel ok.
More, I wanna eat more fresh fruits and vegetables and superfoods and healthy proteins, and less inflammatory and high-calorie foods like pizzas or bagels and cream cheese. I already cut out most processed foods otherwise.
I find that the best way to have a healthy diet isn’t via restriction, but instead focused on eating MORE very healthy food. More organic veggies. More healthy fish. More superfoods. And as I get full from these healthy foods, I eat less unhealthy foods. And I slowly lose some of the excess weight that I put on from my ME/CFS. And I feel better/healthier, as food can be medicine.
Yah I was gonna pretty much comment the same thing! Regardless of my weight I always have symptoms and it seems more like issues of stress etc are likely to make it worse. If you are able to SAFELY lose weight and not be putting yourself in a defect than it may be helpful? For example if you are eating way over your caloric needs and you simply cut back on that. But cutting back on energy and protein etc is definitely going to make it worse if you’re dipping into your basic daily needs.
>I will say that it doesn't affect my SYMPTOMS, but it affects my endurance somewhat - the same amount that carrying a 10 pound backpack would.
This. I just put 10kg (22lb) on recently and I'm now on the long road to slowly getting it off again (I estimate it will take 2 years to lose it because no dieting or exercise since they both make my me/cfs worse) simply because I don't like having to carry the equivalent of a 10kg bag of rice around all day.
I put on 40 pounds from ME/CFS and perimenopause. I’ve taken half of that back off and trending back towards my starting weight. No change to my ME/CFS symptoms. Big change to my mental health though.
I lost weight when I first got sick and ended up underweight. No appetite to speak of. That was when I was at my worst. Took me two years but I’m back in to my pre illness weight and definitely feel better. I find my needs are a lot different than before I had ME/CFS. I think that eating the right foods at the right times is more important than weight in ME/CFS.
There are zero studies showing weight loss helps with ME/cfs. Lots of peeps who suffer from this are low or underweight.
From a practical standpoint, eating less than you need is bad for energy, and for digestive health, things we already struggle with. I know that it is conventional thinking that weight loss magically solves anything but the actual science behind that is weak to missing (even things it can temp help with like some types of sleep apnea etc are often temporary or actually related to changes made to lose the weight and not the actual loss itself)
Eta that take it from a life long anorexic... weight loss often screws up metabolism and digestion. Like, can perm damage it.
I don’t think that you should eat less since food is important and I also don’t think that weight loss will help with ME symptoms. If you want to do anything I would only recommend like swapping a meal with healthier fats or whole foods but similar calories but that’s only if that’s possible for you. Many here it’s not possible to prepare meals like that or have someone to do that for them. I am sadly on the severe end very underweight. I was at risk for feeding tube for over a year I’m still underweight but no longer in dangerous territory.
Hope you keep moving away from feeding tube risk. I don’t think my problems are quite as severe as yours but I had a catastrophic GI collapse last year. It’s really frightening stuff. Hang in there
I doubt it. ME patients come in all shapes and sizes.
There was a woman with CFS in my country who didn't get disability because she was "too fat" (she wasn't) and they ordered her to do a weight loss operation. She did the operation and lost 30 kg, but she didn't get any better. You can read her story[ here through google translate](https://www-dagsavisen-no.translate.goog/fremtiden/nyheter/2022/06/02/me-syke-jane-45-ble-slankeoperert-for-a-tilfredsstille-nav/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=no&_x_tr_pto=wapp). Shocking stuff.
This is particularly upsetting because undergoing an operation can worsen symptoms for pretty long while after too. So awful she had to go through that
Ugh I just read this the other week and man, fuck NAV when it comes to me/cfs disability. All I can hope is that I never reach the stage where I need to apply. Just having GPs suggest cbt and lp and "are you sure youre not just depressed" has been enough of an uphill battle 😒
It's horrible, but NAV Tønsberg is infamous for their treatment of CFS patients. I met another CFS patient from Tønsberg who spent 2 years in a legal battle with them just to get AAP...
My experience with my local NAV was OK, and since getting my disability approved I don't have to deal with anyone at all, which suits me just fine.
i was thin and sick with ME/CFS for over 6 years. i'm now considered obese (gained 60 lbs as a result of medications) and have been for a couple years. i don't think my condition was affected by weight at all. i've been moderate to severe while skinny and i've been moderate to severe while fat. i strongly believe that the health related behaviors matter more than the weight and that medical fatphobia has led to a lot of misconceptions.
No. About 6 months ago I went on a medication that causes weight loss, and am down 25 pounds since then. I was and still am in the "obese" category, but it's a significant % weight loss, as much as any *reasonable* medical recommendation would be to lose without surgery or an Ozempic-type drug. Zero impact on my ME/CFS.
I wouldn’t know because when I try to diet I just feel worse in every way. But I have other health issues that do that like reactive hypoglycaemia. Food gives me an energy boost, if I eat a bit less I’m ok but if I cut calories significantly I just get ravenous, tired, ratty and have hypo after hypo until I start eating normally again.
It’s why I’m fat. Can’t exercise due to CFS, can’t diet for other reasons.
The biggest thing that changed for me after losing 50 lbs was that doctors treated me so much better. They tended to take me more seriously and I don't get the "you need to lose weight to feel better" speech. My A1C was also creeping up there so it helped lower that too. But it did nothing for my CFS symptoms.
no evidence it helps and anecdotally I (involuntarily) lost 28% of my body mass went from 25.1 BMI to 17.6. it didnt do shit to help, undernourishment will also exacerbate fatigue
I've just started an attempt to very slowly lose weight or at least stop gaining weight.
I was 195lbs aiming to drop 22lbs over however long it takes. (5'10 female)
I'm limiting my calories to 1800 daily and fat to 70g.
So I'm still eating plenty just not overeating. I may drop it to 1600 if I plateau for a while but only if it doesn't worsen my fatigue. I think if anything my overeating was bad for fatigue.
I think the question depends on what your eating habits are like generally. If you are scoffing crisps and chocolate constantly like I was then cut down on treats and see how you feel. If you're eating healthy already then maybe your body is the size it's meant to be right now.
Fat is inflammatory on the body and also the inflammation can worsen fat. BUT IMPORTANTLY it's one of many factors. With ME/CFS some doctors can overplay it because of prejudice somewhat.
For me I have extra motivation because I also have lipodema which eventually can build up fat you cannot lose with diet or exercise (only liposuction). I have these huge pads of fat around my knees which I believe are contributing to some of my knee pain. So I need to nip that in the bud. I've also crossed the weight limit where my acid reflux worsens.
If it wasn't causing me any other health issues I might think differently and not bother losing it.
If you're only slightly overweight maybe focusing on not gaining could be better than on losing?
It's tricky because the way our bodies are metabolizing and producing (or rather not producing) energy seems to be so individualized and poorly understood. It's important to keep your body fueled as best you can in hopes of giving it a shot at some more appropriate energy production. It's important to keep up movement where you can to just keep blood and joints moving, without over exerting and further taxing your body. If you can move your body a bit (don't confuse this with me saying exercise haha), and get some nutrient dense foods into your body, you'll feel better whether it causes you to gain or lose weight. I've had seasons of both and most certainly when I can at least do some stretching and get some protein and fruits and vegetables in my body and my body tolerates it a bit, I feel best (which makes sense lol), but my weight is sometimes higher than I'd like, and sometimes lower than I'd like. My worst having been when I was underweight.
I know that doesn't totally answer your question, but I'm not sure there's a strong answer with this particular demographic. Most data suggests that health is impacted from extreme ends of the weight spectrum, either severely underweight or severely overweight, with most of us probably somewhere in the middle and it not actually impacting health metrics that matter. If you are worried though and want to make sure it's worth the energy expenditure, it might be prudent to have blood work done first and see if anything is actually being negatively impacted.
I don’t think weight makes any difference with ME/CFS symptoms. It’s not much but I gained 20lb and lost it again and didn’t notice any difference for me including my POTS symptoms.
However, I have heard some people who have POTS feel worse when they lose a lot of weight. Not sure why that is or if it’s common.
My weight has fluctuated since I got sick and it doesn't make a difference to my symptoms. Would a dramatic difference of like 100 lbs maybe make a difference for some people? Sure, it's possible it could, and I see the logic behind it requiring less energy to move around. But when we're just talking slightly overweight vs "normal BMI," there's no real reason it would make a difference, and no evidence for it either. Eating at a caloric deficit always made my fatigue worse, too, which especially sucked when I wasn't able to eat enough due to my health problems. Sometimes I've been doing better at a lower weight, other times worse at a lower weight. Sometimes better at a higher weight, sometimes worse at a higher weight. It seems to be irrelevant for me.
I've had CFS for almost 4 years , just turned to 16:8 intermittent fasting last month. Part of my goal was to lose the weight I've put on since I initially was diagnosed, but another part was to give my body more down time to rest/recover.
Can't say that the weight loss (18 lbs since Feb) has changed anything about my symptoms, but I do feel better about myself and enjoy being able to wear clothes that I've been avoiding since I gained. Maybe that's enough to encourage you to try it?
Before the onset I was “overweight boarding obese” when you look at BMI as only measurement - when you don’t, I lifted heavy, did reformer pilates and boxing multiple times per week and competed professionally as a dancer. I was 75+ kg then but extremely (and genetically) muscular. Due to that no one took my GI symptoms seriously (I even got a hernia in my stomach and chronic gastritis) it was all fine since I’m skinny now.
Now I’m under 50kg and battling for my life to eat more, my insides can’t take 17 pills a day I take etc. I look anorexic and I get praised for it when I’m barely surviving each day due to PEM and brain fog.
If you feel strong and able to do your daily tasks, focus on switching to healthier options + more protein to protect muscles from degrading.
I lost about 25% of my total weight to go from the middle of overweight to the thin end of healthy weight.
Tldr: my ME is just as bad but I do feel a bit better being thinner. Like, healthier if it’s not too ridiculous for someone with severe ME to say that.
It was a result of some huge diet changes that were forced by my GI issues. I wouldn’t have been able to make the change without that driver. I’m glad that I have made the change though. I used to feel PEM-y if I didn’t eat something every few hours, especially carbs. That’s totally gone away now and I’m fine pretty much eating once a day. That’s a pretty nice improvement for me and it makes my care needs a bit smaller too.
Is it worth it if you’re not being forced? That’s up to everyone to decide for themselves. Am I looking for the positives? Yes. But I do think there are positives.
I also got my body used to eat huge amounts of food each day and over last two weeks have been eating less and suffering less with blood sugar crashes.
Cutting down on overeating seems to help me with POTS too.
Reducing weight depends on each individual and their underlying health, as well as their primary worst symptoms. For me, losing weight makes a huge difference, because it:
- reduces weight on my spine and joints, thus reducing pain
- reduces requires energy & strength required to walk, get up, and sit down
- reduces strain on my heart and lungs (asthma, allergies, sleep apnea, POTS, possible Addison’s disease
- reduces inflammation to some extent, which is supposed to be helpful in controlling RA and FM flare-ups, but I’m not sure if I agree
The problem with losing weight with ME/CFS is the challenge of losing it safely and healthily. Calorie deficits can outweigh great strain on the body, effecting many organ systems negatively. Calorie deficits can equal energy deficits, which, of course, sucks, because we need as much energy as we can keep hold of.
If you can change up the foods you eat to healthier items, without consuming less than your required calories, that may help in a variety of ways - but there is no guarantee that it will promote improvement with ME/CFS directly.
I lost 60 something pounds in a three month period, after having my gall bladder removed. That made a huge difference for me, in the ways I listed above. It also, however, removed one of my failing organs and allowed my body to shed 60 pounds of toxins and retained fluids. It also allowed me to start eating healthier stuff, as opposed to the plain rice, crackers, and mashed potatoes I had been limited to for a year or so.
Anytime I have lost weight, my baseline has improved - but only when it was healthy loss. If it was loss due to illness, malnourishment, inability to eat, or systemic infections involving important organs, my baseline worsened. Overall, I always suggest eating the healthiest diet you can access and afford, simply because abuse it is good for your body, and an ME/CFS body needs all the help it can get.
Best wishes to you in figuring out how best to move forward for your specific needs and circumstances. 🙏🦋
I was borderline underweight when I first got it. Gained weight slowly due to inactivity but still a healthy weight. So I personally don't see weight as anything to do with it but that's just me.
I’m very lost 1 stone by giving up sugar. By which I mean bakes, biscuits, chocolate etc.
It’s taken me since then end of January to lose that weight. I was terribly over weight to start with, but I’m
Now within the “healthy” range.
Difference it’s made to me - far less headaches/migraines and less headaches overall pain.
It hasn’t made any difference cents to PEM or général fatigué.
well, theoretically, some improvement might be gained for some as body fat is thought to be pro-inflammatory and also, carrying less weight should consume less energy and thus decrease the threshold at which PEM is triggered, at least when moving around. I won't suggest trying to lose weight by simply "eating less" but by carefully modifying one's diet in a way that essential nutrient intake remains the same. Also, it is my understanding that excersice isn't, for many reasons, an effective way to loose weight for most healthy people
I notice the effects of more and less weight. It doesn't change my condition, but my limited energy goes a bit further without having extra weight to lug around. Also, I tend to eat healthier when I'm a healthier weight which again doesn't improve my condition so much as remove additional strain on an already overtaxed body.
I'm down almost 50 lbs since Christmas. I have more nerve pain, and sitting is more painful, especially on harder surfaces, because I'm missing my extra padding. I feel better about my general health and physical appearance, so there was a bit of a mood boost, but no positive change for me in terms of energy availability/baseline symptom severity. My IBS symptoms have resolved almost completely (still get attacks during bad PEM), but that was a result of taking sunbutyrate until I could tolerate my current diet, rather than from the weight loss itself.
ETA lost the weight with calorie restriction, no added activity.
I know this may not be what you want to hear, but 10000% yes for my Ehlers Danlos. Fatigue? I think it got better due to slowly slowly incorporating more activities, but lately I keep burning myself out…
Abilify made me gain over 100 lbs. I was miserable and huge, but wasn’t much worse than before except for it was harder to do things like roll over in bed. I’ve lost 125lbs with Mounjaro (because Abilify completely and permanently fucked me), and the only differences from the weight loss are less sweating and the ease of moving around. Not necessarily the energy required to move around, but there’s just less maneuvering to be done walking around at 150lbs vs 275lbs.
Edit: no change to fatigue. No change to OI. No change in cognitive functioning. No change to chronic pain. I guess there was improvement in my sleep, but only because my acid reflux disappeared after I lost the weight again. And the Mounjaro helps my IBS a ton (by the nature of how it works to slow gastric emptying)
Long-lasting weight loss is nearly impossible even in healthy people. People lose weight for a few months or years and almost always end up heavier afterwards. Bodies have a metabolic set point that they will almost inevitably revert to.
It's healthiest to eat the most nutritious diet you can and accept the body you have, without focusing on calorie restriction.
I cannot lose weight sadly. Gained 30 kilos and no matter how low calorie I go I just use to little so it’s not in any way sustainable for me. I used to do a lot of sports as well and really enjoy food. However not eating starchy foods/ sugar and keeping track of high protein and healthy fats makes me feel better and helped me get rid of my inflammation (as in inflammation markers on blood tests).
If you decide to do it, be very careful with the calorie deficit. My fatigue gets a lot worse when I am in big calorie deficits over time, and I've seen a lot of people say the same thing.
As to whether losing weight has helped with fatigue, not for me. But it does make many things in life slightly easier, which frees up a little bit of energy for other things.
I'm in a similar boat. I used to be a recreational dancer, and also have an active job - Since getting ill, I've had to give up both and now I'm double the weight I used to be. It's getting to the point where my weight is making me physically uncomfortable, but I'm a stuck on what to do about it since I can't exercise anymore and the last diet I tried left my ME permanently worse.
I even considered stopping eating altogether (just in short bursts of maybe a few days at a time), but my twice daily medication has to be taken with food.
I, personally, usually feel better at the top end of my healthy bmi. I've never been overweight, but right at the border of being overweight, and I felt my best then.
I was underweight to start many years back then gained for menopause then lost with concentration then gained back after a dreadful flare that lasted way to long now I could still lose a few pounds for sure but I like cake and cookies
For me it’s more like that when I do things/habits that make me lose weight is what helps me. Some people can’t do it but light stretching/exercise. Measured Healthy Eating (counting macros and such), taking care of nutrient intake, etc. so basically if you do things to be healthy you feel better haha :p tho sometimes it’s a real struggle to follow them and I end up gaining weight. I had lost 30KGs over the last two years and gained back 16KGs again over the last couple of months. I am slowly pacing and getting back into it now and I already feel better- because of the healthy habits, losing weight is more of a side effect of that.
I lost 20 pounds through sheer willpower. It was a slog. I ate literally perfectly (perfectly for my body) and neither 100% diet compliance or weight loss made any difference on my fatigue.
Obviously, I can’t do cardio to loose weight so I used diet and very gentle strength training. On days I restrict my calories, I have lower energy than normal. It’s probably not worth it.
Just wanted to add , don't deprive yourself completely of fats because it might worsen brainfog as your brain requires fat.
Additionally, diet is way more important for weight loss than exercise so don't push to exercise if you can't tolerate it (which I'm guessing most of us can't)
Has anyone tried ozempic? I've been too scared to try it, in case it wrecks havoc to my system... but could definitely benefit from losing about 10kilos...
I would be too scared to try it. I have pretty bad constipation. I think my gut is really slow as it is, I’d be afraid of making the sluggishness worse and developing gastroparesis which would be horrible.
I’m on Ozempic because I developed insulin resistance and started gaining weight quite rapidly. I’ve been on 0.5 for the past year or so.
It has worked well for me, but 1) I’m on a non-weight loss dose (though I have lost weight) and 2) it’s designed for blood sugar issues so I don’t know if it’ll be too much additional stress on your body specifically. I will say that if you take a peek at the Ozempic subreddit you’ll see a lot of dramatic side effects, and they can be very hard on the body indeed.
I haven’t seen health improvements, but I have stopped getting episodes of hypoglycemia.
I am on Wegovy (same ingredient as Ozempic). I’ve had success with it but it will not be for everyone as it requires a lot of discipline and meal planning.
I'm quite over weight (5 foot 7, over 200 pounds) and it definitely does make things harder. I really notice the difference even losing 20 pounds.
I hate dieting and like you, really look forward to food for emotional reasons. So I went on Weight Watchers without enthusiasm, but desperately wanting better mobility.
It has actually been a pleasant surprise. I've lost almost 20 pounds without feeling deprived and still eating foods I love.
They have a lot of "zero points" foods that I love, which I can eat unlimited amounts of. Fruit, veges, Greek yoghurt, fish and other seafood, chicken, lentils, black beans, tofu.
I can make meals I really e joy with those foods. And I've changed my sweet snacks from chocolate bars and cake to bliss balls and sweet rice crackers. I don't feel I'm missing out at all.
I still have my cake and sweet treats by having low points meals the rest of the day. I don't feel hungry or emotionally deprived.
The other thing is it's a lot healthier than it used to be, effectively Medit/ anti-inflammatory, which us the diet I find best fir my health.
I'm losing Wright very slowly, but that's fine. It's better than putting g weight on as I was before. And I feel I can continue this eating pattern in the long term.
Seeing everyone comment here how bad it is to be in a caloric deficit I'd like to offer a different perspective. I too have major problems with a caloric deficit, but this is only when I'm eating carbs. I can't do it, hypoglycemic (no diabetes), crash, the whole nine yards. But since I switched to keto I can be in a deficit easily, I feel super satisfied and actually have more energy. I never have blood sugar problems anymore. Keto is not for everyone, but iirc, there can be something off with carb metabolism in a subset of ME people. I can now also fast without problems, I'm eating once a day, cooking maybe twice a week (cook for 4 meals, freeze them and rotate meals from the freezer) and it is saving me so much energy. And best of all, I'm losing weight without really trying that hard.
I gained 15-20 pounds when I first got sick, lost it (not on purpose), gained it with a hard life event, lost it a few years ago (again, not on purpose), and decades later, gained it with menopause. I will say that it doesn't affect my SYMPTOMS, but it affects my endurance somewhat - the same amount that carrying a 10 pound backpack would. Not a 15-20 pound backpack, because of the way it's distributed, I guess.
Exactly this! Both on the fact that calorie restriction/going hungry is NOT good for us, and that losing excess pounds helps us with daily stamina/using fewer spoons to get around. I gained 30lbs my first year with ME/CFS. I lost those 30 lbs my second year, when I had a good recovery after learning to pace, taking supplement that helped, etc. Unfortunately, that recovery didn’t last because I was still pushing myself and not listening to my body’s needs, plus my parents became very ill and I became their caregiver until they died, which was too much for me, and I gained 25lbs since that ensuing crash. I can tell when walking up the stairs or up an incline that those extra pounds make it harder on me. It IS like carrying a heavy backpack, in a way, I remember how much easier it was to go up stairs when I lost weight in my first recovery. I live on a second floor and just go up and down steps every day unless I am being homebound that day. Reducing the fatigue toll that the steps take on me is good. Reducing my weight helps reduce that toll. I lost 10 lbs recently when I went to an eco-village in a jungle and ate their super-healthy vegan plus fish diet with organic veggies and suoerfood smoothies all the time. The reduced weight helped me feel that I had more stamina, because I was not carrying extra pounds on me. Unfortunately, I have gained back 5 of those lbs since I came back to the USA. I might need to be more strict in terms of what I eat here. I felt great on that healthy diet. But I do NOT do well on a calorie-restriction or fasting diet! Fasting seems to be too much stress on my body, and causes PEM. I will not harm my health by restricting my food intake like that. I also seem to need a lot of protein in my diet to feel ok. More, I wanna eat more fresh fruits and vegetables and superfoods and healthy proteins, and less inflammatory and high-calorie foods like pizzas or bagels and cream cheese. I already cut out most processed foods otherwise. I find that the best way to have a healthy diet isn’t via restriction, but instead focused on eating MORE very healthy food. More organic veggies. More healthy fish. More superfoods. And as I get full from these healthy foods, I eat less unhealthy foods. And I slowly lose some of the excess weight that I put on from my ME/CFS. And I feel better/healthier, as food can be medicine.
Yah I was gonna pretty much comment the same thing! Regardless of my weight I always have symptoms and it seems more like issues of stress etc are likely to make it worse. If you are able to SAFELY lose weight and not be putting yourself in a defect than it may be helpful? For example if you are eating way over your caloric needs and you simply cut back on that. But cutting back on energy and protein etc is definitely going to make it worse if you’re dipping into your basic daily needs.
>I will say that it doesn't affect my SYMPTOMS, but it affects my endurance somewhat - the same amount that carrying a 10 pound backpack would. This. I just put 10kg (22lb) on recently and I'm now on the long road to slowly getting it off again (I estimate it will take 2 years to lose it because no dieting or exercise since they both make my me/cfs worse) simply because I don't like having to carry the equivalent of a 10kg bag of rice around all day.
I put on 40 pounds from ME/CFS and perimenopause. I’ve taken half of that back off and trending back towards my starting weight. No change to my ME/CFS symptoms. Big change to my mental health though.
Did not improve your daily fatigue ? 😮
Nope. Not one bit.
I lost weight when I first got sick and ended up underweight. No appetite to speak of. That was when I was at my worst. Took me two years but I’m back in to my pre illness weight and definitely feel better. I find my needs are a lot different than before I had ME/CFS. I think that eating the right foods at the right times is more important than weight in ME/CFS.
I also have the issue of having no appetite. I feel like I haven’t heard as many people talk about that symptom, but it’s hard.
There are zero studies showing weight loss helps with ME/cfs. Lots of peeps who suffer from this are low or underweight. From a practical standpoint, eating less than you need is bad for energy, and for digestive health, things we already struggle with. I know that it is conventional thinking that weight loss magically solves anything but the actual science behind that is weak to missing (even things it can temp help with like some types of sleep apnea etc are often temporary or actually related to changes made to lose the weight and not the actual loss itself) Eta that take it from a life long anorexic... weight loss often screws up metabolism and digestion. Like, can perm damage it.
I don’t think that you should eat less since food is important and I also don’t think that weight loss will help with ME symptoms. If you want to do anything I would only recommend like swapping a meal with healthier fats or whole foods but similar calories but that’s only if that’s possible for you. Many here it’s not possible to prepare meals like that or have someone to do that for them. I am sadly on the severe end very underweight. I was at risk for feeding tube for over a year I’m still underweight but no longer in dangerous territory.
Hope you keep moving away from feeding tube risk. I don’t think my problems are quite as severe as yours but I had a catastrophic GI collapse last year. It’s really frightening stuff. Hang in there
I doubt it. ME patients come in all shapes and sizes. There was a woman with CFS in my country who didn't get disability because she was "too fat" (she wasn't) and they ordered her to do a weight loss operation. She did the operation and lost 30 kg, but she didn't get any better. You can read her story[ here through google translate](https://www-dagsavisen-no.translate.goog/fremtiden/nyheter/2022/06/02/me-syke-jane-45-ble-slankeoperert-for-a-tilfredsstille-nav/?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=no&_x_tr_pto=wapp). Shocking stuff.
This is particularly upsetting because undergoing an operation can worsen symptoms for pretty long while after too. So awful she had to go through that
Yes, and she didn't even get her disability at the end of it. They determined that she needed to do more cognitive therapy...
Ugh I just read this the other week and man, fuck NAV when it comes to me/cfs disability. All I can hope is that I never reach the stage where I need to apply. Just having GPs suggest cbt and lp and "are you sure youre not just depressed" has been enough of an uphill battle 😒
It's horrible, but NAV Tønsberg is infamous for their treatment of CFS patients. I met another CFS patient from Tønsberg who spent 2 years in a legal battle with them just to get AAP... My experience with my local NAV was OK, and since getting my disability approved I don't have to deal with anyone at all, which suits me just fine.
I lost about a quarter of my body weight but didn’t see much if any improvements in my cfs symptoms unfortunately
i was thin and sick with ME/CFS for over 6 years. i'm now considered obese (gained 60 lbs as a result of medications) and have been for a couple years. i don't think my condition was affected by weight at all. i've been moderate to severe while skinny and i've been moderate to severe while fat. i strongly believe that the health related behaviors matter more than the weight and that medical fatphobia has led to a lot of misconceptions.
No. About 6 months ago I went on a medication that causes weight loss, and am down 25 pounds since then. I was and still am in the "obese" category, but it's a significant % weight loss, as much as any *reasonable* medical recommendation would be to lose without surgery or an Ozempic-type drug. Zero impact on my ME/CFS.
I wouldn’t know because when I try to diet I just feel worse in every way. But I have other health issues that do that like reactive hypoglycaemia. Food gives me an energy boost, if I eat a bit less I’m ok but if I cut calories significantly I just get ravenous, tired, ratty and have hypo after hypo until I start eating normally again. It’s why I’m fat. Can’t exercise due to CFS, can’t diet for other reasons.
Losing more than 10% of your body weight fails 95 to 98 % of the time. Weightloss is STRESSFUL on your body.
The biggest thing that changed for me after losing 50 lbs was that doctors treated me so much better. They tended to take me more seriously and I don't get the "you need to lose weight to feel better" speech. My A1C was also creeping up there so it helped lower that too. But it did nothing for my CFS symptoms.
no evidence it helps and anecdotally I (involuntarily) lost 28% of my body mass went from 25.1 BMI to 17.6. it didnt do shit to help, undernourishment will also exacerbate fatigue
I lost 30kg and it did absolutely nothing. I’ve been getting worse in that time but it’s probably attributed to other things
Nope. Down about seventy pounds and noticed 0 improvement. If anything way more sensitive to cold and less bothered by heat.
I've just started an attempt to very slowly lose weight or at least stop gaining weight. I was 195lbs aiming to drop 22lbs over however long it takes. (5'10 female) I'm limiting my calories to 1800 daily and fat to 70g. So I'm still eating plenty just not overeating. I may drop it to 1600 if I plateau for a while but only if it doesn't worsen my fatigue. I think if anything my overeating was bad for fatigue. I think the question depends on what your eating habits are like generally. If you are scoffing crisps and chocolate constantly like I was then cut down on treats and see how you feel. If you're eating healthy already then maybe your body is the size it's meant to be right now. Fat is inflammatory on the body and also the inflammation can worsen fat. BUT IMPORTANTLY it's one of many factors. With ME/CFS some doctors can overplay it because of prejudice somewhat. For me I have extra motivation because I also have lipodema which eventually can build up fat you cannot lose with diet or exercise (only liposuction). I have these huge pads of fat around my knees which I believe are contributing to some of my knee pain. So I need to nip that in the bud. I've also crossed the weight limit where my acid reflux worsens. If it wasn't causing me any other health issues I might think differently and not bother losing it. If you're only slightly overweight maybe focusing on not gaining could be better than on losing?
No, I really don't think weight makes a difference. I am perfect weight for my age and height, and yet here I am partially bedbound.
It's tricky because the way our bodies are metabolizing and producing (or rather not producing) energy seems to be so individualized and poorly understood. It's important to keep your body fueled as best you can in hopes of giving it a shot at some more appropriate energy production. It's important to keep up movement where you can to just keep blood and joints moving, without over exerting and further taxing your body. If you can move your body a bit (don't confuse this with me saying exercise haha), and get some nutrient dense foods into your body, you'll feel better whether it causes you to gain or lose weight. I've had seasons of both and most certainly when I can at least do some stretching and get some protein and fruits and vegetables in my body and my body tolerates it a bit, I feel best (which makes sense lol), but my weight is sometimes higher than I'd like, and sometimes lower than I'd like. My worst having been when I was underweight. I know that doesn't totally answer your question, but I'm not sure there's a strong answer with this particular demographic. Most data suggests that health is impacted from extreme ends of the weight spectrum, either severely underweight or severely overweight, with most of us probably somewhere in the middle and it not actually impacting health metrics that matter. If you are worried though and want to make sure it's worth the energy expenditure, it might be prudent to have blood work done first and see if anything is actually being negatively impacted.
I don’t think weight makes any difference with ME/CFS symptoms. It’s not much but I gained 20lb and lost it again and didn’t notice any difference for me including my POTS symptoms. However, I have heard some people who have POTS feel worse when they lose a lot of weight. Not sure why that is or if it’s common.
Zero change. I’ve been sick for decades. Definitely the best to give your body nutrients and calories whatever that looks like for you at this time.
I don’t see how that would help. I’ve been sick for 25-30 years and I’ve been underweight most of my life. I’m severe and mostly bedbound.
Nope.
My weight has fluctuated since I got sick and it doesn't make a difference to my symptoms. Would a dramatic difference of like 100 lbs maybe make a difference for some people? Sure, it's possible it could, and I see the logic behind it requiring less energy to move around. But when we're just talking slightly overweight vs "normal BMI," there's no real reason it would make a difference, and no evidence for it either. Eating at a caloric deficit always made my fatigue worse, too, which especially sucked when I wasn't able to eat enough due to my health problems. Sometimes I've been doing better at a lower weight, other times worse at a lower weight. Sometimes better at a higher weight, sometimes worse at a higher weight. It seems to be irrelevant for me.
I've had CFS for almost 4 years , just turned to 16:8 intermittent fasting last month. Part of my goal was to lose the weight I've put on since I initially was diagnosed, but another part was to give my body more down time to rest/recover. Can't say that the weight loss (18 lbs since Feb) has changed anything about my symptoms, but I do feel better about myself and enjoy being able to wear clothes that I've been avoiding since I gained. Maybe that's enough to encourage you to try it?
Before the onset I was “overweight boarding obese” when you look at BMI as only measurement - when you don’t, I lifted heavy, did reformer pilates and boxing multiple times per week and competed professionally as a dancer. I was 75+ kg then but extremely (and genetically) muscular. Due to that no one took my GI symptoms seriously (I even got a hernia in my stomach and chronic gastritis) it was all fine since I’m skinny now. Now I’m under 50kg and battling for my life to eat more, my insides can’t take 17 pills a day I take etc. I look anorexic and I get praised for it when I’m barely surviving each day due to PEM and brain fog. If you feel strong and able to do your daily tasks, focus on switching to healthier options + more protein to protect muscles from degrading.
I lost about 25% of my total weight to go from the middle of overweight to the thin end of healthy weight. Tldr: my ME is just as bad but I do feel a bit better being thinner. Like, healthier if it’s not too ridiculous for someone with severe ME to say that. It was a result of some huge diet changes that were forced by my GI issues. I wouldn’t have been able to make the change without that driver. I’m glad that I have made the change though. I used to feel PEM-y if I didn’t eat something every few hours, especially carbs. That’s totally gone away now and I’m fine pretty much eating once a day. That’s a pretty nice improvement for me and it makes my care needs a bit smaller too. Is it worth it if you’re not being forced? That’s up to everyone to decide for themselves. Am I looking for the positives? Yes. But I do think there are positives.
I also got my body used to eat huge amounts of food each day and over last two weeks have been eating less and suffering less with blood sugar crashes. Cutting down on overeating seems to help me with POTS too.
The only benefit I’ve noticed is less joint pain
Reducing weight depends on each individual and their underlying health, as well as their primary worst symptoms. For me, losing weight makes a huge difference, because it: - reduces weight on my spine and joints, thus reducing pain - reduces requires energy & strength required to walk, get up, and sit down - reduces strain on my heart and lungs (asthma, allergies, sleep apnea, POTS, possible Addison’s disease - reduces inflammation to some extent, which is supposed to be helpful in controlling RA and FM flare-ups, but I’m not sure if I agree The problem with losing weight with ME/CFS is the challenge of losing it safely and healthily. Calorie deficits can outweigh great strain on the body, effecting many organ systems negatively. Calorie deficits can equal energy deficits, which, of course, sucks, because we need as much energy as we can keep hold of. If you can change up the foods you eat to healthier items, without consuming less than your required calories, that may help in a variety of ways - but there is no guarantee that it will promote improvement with ME/CFS directly. I lost 60 something pounds in a three month period, after having my gall bladder removed. That made a huge difference for me, in the ways I listed above. It also, however, removed one of my failing organs and allowed my body to shed 60 pounds of toxins and retained fluids. It also allowed me to start eating healthier stuff, as opposed to the plain rice, crackers, and mashed potatoes I had been limited to for a year or so. Anytime I have lost weight, my baseline has improved - but only when it was healthy loss. If it was loss due to illness, malnourishment, inability to eat, or systemic infections involving important organs, my baseline worsened. Overall, I always suggest eating the healthiest diet you can access and afford, simply because abuse it is good for your body, and an ME/CFS body needs all the help it can get. Best wishes to you in figuring out how best to move forward for your specific needs and circumstances. 🙏🦋
I was borderline underweight when I first got it. Gained weight slowly due to inactivity but still a healthy weight. So I personally don't see weight as anything to do with it but that's just me.
I’m very lost 1 stone by giving up sugar. By which I mean bakes, biscuits, chocolate etc. It’s taken me since then end of January to lose that weight. I was terribly over weight to start with, but I’m Now within the “healthy” range. Difference it’s made to me - far less headaches/migraines and less headaches overall pain. It hasn’t made any difference cents to PEM or général fatigué.
well, theoretically, some improvement might be gained for some as body fat is thought to be pro-inflammatory and also, carrying less weight should consume less energy and thus decrease the threshold at which PEM is triggered, at least when moving around. I won't suggest trying to lose weight by simply "eating less" but by carefully modifying one's diet in a way that essential nutrient intake remains the same. Also, it is my understanding that excersice isn't, for many reasons, an effective way to loose weight for most healthy people
I notice the effects of more and less weight. It doesn't change my condition, but my limited energy goes a bit further without having extra weight to lug around. Also, I tend to eat healthier when I'm a healthier weight which again doesn't improve my condition so much as remove additional strain on an already overtaxed body.
No. I was literally an athlete when my ME worsened.
I'm down almost 50 lbs since Christmas. I have more nerve pain, and sitting is more painful, especially on harder surfaces, because I'm missing my extra padding. I feel better about my general health and physical appearance, so there was a bit of a mood boost, but no positive change for me in terms of energy availability/baseline symptom severity. My IBS symptoms have resolved almost completely (still get attacks during bad PEM), but that was a result of taking sunbutyrate until I could tolerate my current diet, rather than from the weight loss itself. ETA lost the weight with calorie restriction, no added activity.
I know this may not be what you want to hear, but 10000% yes for my Ehlers Danlos. Fatigue? I think it got better due to slowly slowly incorporating more activities, but lately I keep burning myself out…
on the flip side gaining 100 lbs did not make my symptoms worse
Abilify made me gain over 100 lbs. I was miserable and huge, but wasn’t much worse than before except for it was harder to do things like roll over in bed. I’ve lost 125lbs with Mounjaro (because Abilify completely and permanently fucked me), and the only differences from the weight loss are less sweating and the ease of moving around. Not necessarily the energy required to move around, but there’s just less maneuvering to be done walking around at 150lbs vs 275lbs. Edit: no change to fatigue. No change to OI. No change in cognitive functioning. No change to chronic pain. I guess there was improvement in my sleep, but only because my acid reflux disappeared after I lost the weight again. And the Mounjaro helps my IBS a ton (by the nature of how it works to slow gastric emptying)
Honestly losing weight always makes me worse because it further lowers blood pressure and I already struggle with POTS.
Long-lasting weight loss is nearly impossible even in healthy people. People lose weight for a few months or years and almost always end up heavier afterwards. Bodies have a metabolic set point that they will almost inevitably revert to. It's healthiest to eat the most nutritious diet you can and accept the body you have, without focusing on calorie restriction.
I cannot lose weight sadly. Gained 30 kilos and no matter how low calorie I go I just use to little so it’s not in any way sustainable for me. I used to do a lot of sports as well and really enjoy food. However not eating starchy foods/ sugar and keeping track of high protein and healthy fats makes me feel better and helped me get rid of my inflammation (as in inflammation markers on blood tests).
If you decide to do it, be very careful with the calorie deficit. My fatigue gets a lot worse when I am in big calorie deficits over time, and I've seen a lot of people say the same thing. As to whether losing weight has helped with fatigue, not for me. But it does make many things in life slightly easier, which frees up a little bit of energy for other things.
I'm in a similar boat. I used to be a recreational dancer, and also have an active job - Since getting ill, I've had to give up both and now I'm double the weight I used to be. It's getting to the point where my weight is making me physically uncomfortable, but I'm a stuck on what to do about it since I can't exercise anymore and the last diet I tried left my ME permanently worse. I even considered stopping eating altogether (just in short bursts of maybe a few days at a time), but my twice daily medication has to be taken with food.
Another plus I see to higher body fat is extra insulation, very valuable when getting cold can be such a huge trigger for PEM.
I, personally, usually feel better at the top end of my healthy bmi. I've never been overweight, but right at the border of being overweight, and I felt my best then.
I was underweight to start many years back then gained for menopause then lost with concentration then gained back after a dreadful flare that lasted way to long now I could still lose a few pounds for sure but I like cake and cookies
Oh and it never helped me with pains fatigue or any of the other symptoms.
For me it’s more like that when I do things/habits that make me lose weight is what helps me. Some people can’t do it but light stretching/exercise. Measured Healthy Eating (counting macros and such), taking care of nutrient intake, etc. so basically if you do things to be healthy you feel better haha :p tho sometimes it’s a real struggle to follow them and I end up gaining weight. I had lost 30KGs over the last two years and gained back 16KGs again over the last couple of months. I am slowly pacing and getting back into it now and I already feel better- because of the healthy habits, losing weight is more of a side effect of that.
Not for me, however I’m under weight rn so I don’t know maybe if I was somewhere in between
Weight fluctuations haven't changed my CFS symptoms only helped or hurt my body pain.
I lost 20 pounds through sheer willpower. It was a slog. I ate literally perfectly (perfectly for my body) and neither 100% diet compliance or weight loss made any difference on my fatigue. Obviously, I can’t do cardio to loose weight so I used diet and very gentle strength training. On days I restrict my calories, I have lower energy than normal. It’s probably not worth it.
Just wanted to add , don't deprive yourself completely of fats because it might worsen brainfog as your brain requires fat. Additionally, diet is way more important for weight loss than exercise so don't push to exercise if you can't tolerate it (which I'm guessing most of us can't)
Has anyone tried ozempic? I've been too scared to try it, in case it wrecks havoc to my system... but could definitely benefit from losing about 10kilos...
I would be too scared to try it. I have pretty bad constipation. I think my gut is really slow as it is, I’d be afraid of making the sluggishness worse and developing gastroparesis which would be horrible.
I’m on Ozempic because I developed insulin resistance and started gaining weight quite rapidly. I’ve been on 0.5 for the past year or so. It has worked well for me, but 1) I’m on a non-weight loss dose (though I have lost weight) and 2) it’s designed for blood sugar issues so I don’t know if it’ll be too much additional stress on your body specifically. I will say that if you take a peek at the Ozempic subreddit you’ll see a lot of dramatic side effects, and they can be very hard on the body indeed. I haven’t seen health improvements, but I have stopped getting episodes of hypoglycemia.
Thank you very much for your answer.
I am on Wegovy (same ingredient as Ozempic). I’ve had success with it but it will not be for everyone as it requires a lot of discipline and meal planning.
Thank you so much for answering
I'm quite over weight (5 foot 7, over 200 pounds) and it definitely does make things harder. I really notice the difference even losing 20 pounds. I hate dieting and like you, really look forward to food for emotional reasons. So I went on Weight Watchers without enthusiasm, but desperately wanting better mobility. It has actually been a pleasant surprise. I've lost almost 20 pounds without feeling deprived and still eating foods I love. They have a lot of "zero points" foods that I love, which I can eat unlimited amounts of. Fruit, veges, Greek yoghurt, fish and other seafood, chicken, lentils, black beans, tofu. I can make meals I really e joy with those foods. And I've changed my sweet snacks from chocolate bars and cake to bliss balls and sweet rice crackers. I don't feel I'm missing out at all. I still have my cake and sweet treats by having low points meals the rest of the day. I don't feel hungry or emotionally deprived. The other thing is it's a lot healthier than it used to be, effectively Medit/ anti-inflammatory, which us the diet I find best fir my health. I'm losing Wright very slowly, but that's fine. It's better than putting g weight on as I was before. And I feel I can continue this eating pattern in the long term.
Seeing everyone comment here how bad it is to be in a caloric deficit I'd like to offer a different perspective. I too have major problems with a caloric deficit, but this is only when I'm eating carbs. I can't do it, hypoglycemic (no diabetes), crash, the whole nine yards. But since I switched to keto I can be in a deficit easily, I feel super satisfied and actually have more energy. I never have blood sugar problems anymore. Keto is not for everyone, but iirc, there can be something off with carb metabolism in a subset of ME people. I can now also fast without problems, I'm eating once a day, cooking maybe twice a week (cook for 4 meals, freeze them and rotate meals from the freezer) and it is saving me so much energy. And best of all, I'm losing weight without really trying that hard.