Hi Beverley, I’m new to the forum but not so new to keto. I was diagnosed with chronic fatigue & fibromyalgia in June 2015. Keto does work amazingly well to overcome the disabling fatigue & horrible dementia like brain fog us poor CFS sufferers experience but it has taken a lot of self-experimentation to get myself to that point. I’m happy to share what I’ve learnt but as this is the very first time I’ve done anything on the forum I’d like to make sure you’re actually still following this thread (especially since it dates back to early August). Where are you? I’m in Sydney, I’d love to connect with fellow CFS/keto people - don’t imagine there’s too many of us out there. Because of the hypoglycemia the transition from sugar burner to fat burner is horrific - keto “flu” is a mild description of what I feel 
Cheers, Andrea
Chronic fatigue
I have Hashimotos and have been exhausted for years! Since Keto I have more energy. No question. Last night I had moderate carbs at a wedding and today I am exhausted which I have not experienced in many months even when I did not get enough sleep. I assume keto has been helping although I am not sure
Hi Anrea, Im so happy to hear from you and thank you so much for replying. You’re right, there are many CF people but few who can vouch for the keto way of eating to help it. My daughter has given up on keto for now because she was not feeling as well as she had hoped and so was so despondent.
I listened to the keto dudes podcast called ‘rogue dietician’ with an Australian lady who inspired my to ask if she could help my daughter. I think they are going to hook up very soon via skype to assess whether or not they can help. We are in the Uk by the way.
Andrea Im sure she would love to be in touch with you to hear your experience. Even if keto doesnt ‘cure’ CF, its got to make a difference in some way. I will phone her today to let her know about you and you can both exchange emails. Shes really low at the moment so this may give her some hope.
Mant thanks, Bev.
Hi Bev,
I’m so glad to hear from you & please tell your daughter not to give up hope - I’d love to connect with her and have a cfs/keto buddy 
It’s a really hard slog to do keto with cfs - you basically have to go for the classical strict ketogenic diet used for epilepsy & incorporate a combination of fasting and calorie restriction. At least I have to anyway!! All these other guys complaining about how hard it is to do nutritional ketosis are utter wimps
Yes I heard the same podcast with the Rogue Dietitian & then I meet Yuan at the Low Carb Conference held on the Gold Coast this weekend - gorgeous dynamic & very entertaining young woman. She was a brilliant presenter - I’ve made an appointment with Jess, their gut health specialist for tomorrow (consultation via Skype). Yuan is not taking on any new clients at the moment.
What I’ve worked out with all my n=1 experiments over the past 2 years is that in order to feel all the fabulous keto benefits (high energy, brilliant mental clarity, upbeat motivated/positive mood etc) I need to wake with ketones = or >3 then I fast until mid afternoon where they’ll usually climb to about 5 or 6 with blood sugar in low 4’s/3’s. I mix up my calorie intake - doing a couple of very low calorie days (eg 300) then some full calorie days (approx 1,500-1,700) and anything in between (I’m very short 
1.54m & 54kg) . Basically trying to ensure I keep my ketones high - in the therapeutic range. I read somewhere that epileptics need ketones stable at around 4. Similarly with chronic fatigue’s damaged/dysfunctional mitochondria I need the high therapeutic levels (& not the nutritional range of 1-3). There’s a page on this forum that lists a ton of studies re: keto & all sorts of different medical conditions.
I’ve attached the one related to cfs - basically they list everything I do - calorie restriction/fasting/ketosis:
When you’re really low in energy it’s impossible to feel positive - your brain has no spare energy to bother with your mood - it’s too busy allocating your “poor” energy reserves to run your major organs…so I completely understand & relate to your daughter’s despondency. I’ve been there and I was also feeling very sad that keto was not the answer for me - especially when all these people we’re saying how fabulous they felt on k=1. I DID NOT - the brain fog/fatigue/irritability/negative mood etc was there: k=1 to 3 was nowhere near enough for me. Then I came across all the info re: epilepsy, cancer etc once I applied their protocols I got the keto benefits! It’s not easy - you have to be so scientific and strict about your food & calculating macros etc but what else do we cfs people have…nothing else comes close! Yes cfs is multifactorial - I do have gut issues, heaps of food sensitivities, mould allergies etc that I have to manage but keto greatly improves my quality of life!
Looking forward to connecting with your daughter - my guess is that she’s probably quite a bit younger than me - I’m a 47 year old mother of three :)
Cheers
Andrea
Hi Sapphire,
I find I don’t even need to have carbs, even if I just over indulge on very high fat keto foods - exceeding my caloric needs, my ketones plummet to 0.2 and that climb up to about ketones of 3 is horrible.
I’m pretty much bed bound for 2 days with the hypoglycemia - so hard to focus, very irritable, need to nap constantly YUCK YUCK YUCK!! And knowing all that I’m still tempted to overindulge - insane 
I am getting a little more sensible though - there’s only so many times I can endure that horrible drop out of therapetic ketosis. Have a read of my reply to Bev below where I describe what I do to manage my cfs. I’m guessing that as an autoimmune person a similar approach could be very good for you. Have you done the Paleo Autoimmune Protocol or looked into Terry Wahls protocol. Both were incredibly helpful for me in identifying what foods were setting off my immune system.
Cheers
Andrea
Sapphire
Here’s the link to the listing of keto & illnesses/diseases - there’s a few studies there for autoimmune:
Hope it helps.
Hi Andrea, thank you for the info. I haven’t managed to get hold of my daughter yet but as soon as I do I will forward your messages. Its so kind of you to offer support. She is 30yrs old and would love to live a normal life again. I will do all I can to help.
Hi, I have had CFS/ME for six years. Started keto earlier this year and have had positive results (mire so than with anything else I have tried over the years, meds, therapy, pacing, diet changes etc). At first (for a few months) the big noticeable positive for me was a HUGE reduction in pain levels. Only many months in was I able to look back and compare to previously to see that energy had crept up, slowly but consistently. Brain fog too is starting to lift slowly but surely. Definitely far less boom and busy major crashes and when a crash does happen now it is far less severe than it used to be and for a much shorter duration. I figure my body was under stress and trying to push through for years and even after diagnosis I have had rhis awful illness for many years so it is not surprising that this will be a long term healing process, not an overnight fix. However I would very much encourage your daughter to keep at it, record how she is feeling and what state she is in each week, what she is able/not able to do and get her to rate or describe her pain levels. Then she will have something to look back on and compare to further down the line. For this illness it is not the swift dramatic changes that those doing keto for weightloss experience but rather about beginning to feel slightly more human and alive again bit by bit, day by day. Good luck to you both xxx
I am Uk also using keto for CFs with positive (longer term) results. Would love to help if I can. Not sure if/how messaging works on here. Please note my post/reply further down. Hx
Hello Keto4CFS,
thank you for your reply which is good to hear and encouraging to others. Im pleased to hear that you have found something that has made a difference to your CF, its such a debilitating illness.
My daughter is going to have a skype consultation with the Australian dietician soon and it had been suggested they concentrate on her gut bacteria. I think Andrea (the other lady who has been so supportive on here) was also going to have a similar consultation. Fingers crossed. I agree with you that its unrealistic to expect a long standing illness to go quickly, although diabetes seems to improve very quickly. Please let us know how you progress.
Best wishes,
Bev.
Hi there
I started the keto diet a month ago, after reading Dr Myhill’s book. I have had CFS for ten plus years and I am 36.
I have felt quite different with the new diet. I feel more calm and that perhaps my body isn’t working so hard. My stomach feels better. But I wouldn’t say there has been much change in functionality.
I do watch my water intake and take magnesium supplements.
Any thoughts? I will keep with it for a bit longer. I see there are others seeing a nutritionist- what is that for?
I am keto for ME and chronic pain and find that it most definitely helps to keep my pain to more manageable levels (whereas I used to be in absolute agony, all over my body pretty much all the time, couldn’t sleep due to pain, it hurt for anything to touch my skin, even clothes etc) it brings tears to my eyes just thinking about how much pain I used to be in pre keto yet now my pain levels are not even half what they used to be. I have not however noticed a major change in fatigue or physical functionality levels sadly. I am still holding out hope and figure that my body took many months (even years possibly) going downhill re illness, slumping energy levels, reduced tollerance, etc so I cannot expect miracles in just a few months. What I have found though is that by continuing with this way of eating my brain fog is slowly but surely starting to lift a little and I am beginning to feel a bit more like my old self in mind again. From previously being a first class hons grad and winning awards for my work, I got very ill and then spent years not being able to even read a single paragraph of a book or letter without forgetting what it said. I could not look at a screen without feeling dizzy and struggled to put sentences together. Now my brain seems to be getting back to an ok level of functioning, nowhere near what I was previously and I don’t know if I will ever get back to that but I can now read stories to my kids at night, can read letters from their school (and actually remember to act on them!) and can now spend short periods of time at a screen. So basically I believe this diet is helping (far more than any meds or other therapies) in many ways, it is not a quick fix but I am willing to give it time to help my body to heal itself again. Please do continue to give it longer for you too. You may not notice immediate changes but a couple of months down the line you may look back and suddenley realise how far you have come. Then you will thank yourself for sticking with it. Xx
I’m a newbie who has suffered with CFS/ME for decades. I also have been diagnosed with Chronic EBV, Hashimoto’s Thyroiditis, and Lupus. I’m 46 years old and have been keto for a little over 4 weeks. I am doing the Wahls Protocol Level 3 Ketogenic Diet.
I don’t feel better yet on keto, but know it is still early on and I’ve been sick a long time. I will hang in there out of desperation. I’m also concerned about my thyroid function lowering even more on keto, but like I said, I’m desperate.
Andrea, I find it really interesting that you only feel better with ketones above 3. The first few weeks I could easily get me blood ketone readings above 3, but now it’s hard to get them above 1, even at 80% fat and 5% carbs. I read that this sometimes happens as people become fat adapted, but I’m concerned about the low ketone readings as I’m doing keto for CFS.
Also wondering how long it took you to feel better with keto? 4 weeks in and I’m as tired and non-functional as ever.
I was diagnosed with CFS/ME/Fibromyalgia January 2017 and have been unable to work for the past 2 years. Started keto 9/2017 and noticed some improvement in brain fog and mood within a couple of weeks. Took me about 5 months (~ 2/2018) before I felt significantly fat adapted and started to see some slow progress with my energy and stamina.
I’ve shared some of my story in the following thread:
Hang in there! It took a long time for our bodies to become sick, healing is also going to take some time.
Thank you so much for your response and for sharing your story, Diane! I eagerly (if slowly due to brain fog) read your entire CFS thread. I am currently reading Dr. Myhill’s book on CFS/ME and just bought her other book Sustainable Medicine per your suggestion. Looking forward to implementing her suggestions!
Question: Do you find you need to keep your ketones above 3 in order to feel better like @andy70 does? I could get my blood ketones over 3 easily the first three weeks on keto, but now into week four I can’t get them over 1.
Thank you for your help. 
Nope, I don’t get above 2 very often. I only get above 3 if I’ve fasted at least 3 days or so (as best as I can recall). So, not very often. I do find the following several things very helpful.
I try to keep my meals discrete. I eat until I’m very full and keep meals to a 90 minute window. Then I don’t snack between meals (this becomes easier the longer you’ve been eating ketogenically and the more “fat adapted” your body becomes). I try to mostly stick to 2 meals a day. This lets me stretch the time between when I stop eating in the evening and my first meal of the day. This limits the times I’m getting increased insulin levels over the day. I believe controlling my blood glucose this way helps reduce inflammation which I believe helps control pain and aids in improving my energy. That said I usually have at least a couple of days a month when I am much hungrier. I eat more (and more often) on those days.
I also am becoming very vigilant in avoiding corn, canola and soybean oils (really I’m avoiding all seed and vegetable oils) which I’ve recently discovered cause me to have greatly increased inflammation with an accompanying noticeable impact on my pain, energy and stamina. This has complicated my meals since I no longer use purchased mayonnaise or creamy dressings but make my own using avocado oil.
I also use a good quality MCT oil as a supplement. I am using it to support mitochondrial health and biogenesis and it helps with brain function as well.
Here are a couple of articles (but not the one I remember reading before, I’ll add a link later if I come across it) that I came up after a quick google search: https://blog.bulletproof.com/mct-enhance-exercise-endurance-2b/ ; https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5805166/
I don’t use any of the Bulletproof brand of MCT oil products but a different brand that contains C8 & C10 MCTs. If you decide to use an MCT oil, start slowly (with maybe a teaspoon a day) and build up from there. It also helps if you take it with food. Otherwise, people have reported incidences of disaster pants!
I also wish to note that the more effective your body becomes at using ketones, the fewer “excess” ketones you will find in either urine or blood. This is a normal progression that occurs as your body becomes more and more fat adapted. This is a GOOD sign. Here is a link from the tuitnutition website run by Amy Berger. I think it is very helpful in explaining this idea: http://www.tuitnutrition.com/2016/01/dont-be-a-ketard1.html?m=1
Edit: typo
Thank you SO much. This is all incredibly helpful!
Do you by chance have thyroid issues? I have hashimoto’s which has all but destroyed my thyroid function. I’ve read some people with hashi’s do well on keto while others don’t. I guess it’s an n=1 experiment.
I have hypothyroisism - no Hashimoto’s that I’m aware of. I don’t think I was ever tested.
I keep my hypothyroidism under control with a daily supplement of iodine (Iodoral) and a prescription (Armour thyroid).
You are giving me hope, which is invaluable as I often feel hopeless in regards to my health. Many, many thanks!!
I’ll be 8 weeks keto this Thursday, and am starting to feel a bit better mental clarity. but not much physical energy yet. I know it’s still early and am just happy to see any improvement in my CFS at all!
I’ve been adding the supplements recommended by Dr. Sarah Myhill, but have not been able to find a good multivitamin/multimineral supplement. Would you mind sharing with me the mutivitamin/multimineral that you use?
Thank you so much and I hope you’re well!!