First time in remission with ketogenic diet

What you wrote in the first paragraph is basically my own experience and that of others. @Trish's theory that it could be SIBO is a valid one, but you cannot prove that it isn't cellular metabolic impairments that are suggested by a number of high quality ME research studies. There are no high quality research studies suggesting SIBO is a major cause of ME symptoms.

Based on what you've written be careful that your body is not fooling you. I don't think you can prove whether you have SIBO and whether it is the underlying cause of your symptoms. It could be that you do have ME cellular metabolic dysfunction/impairment, and by changing your diet to different macro proportions you are circumventing this and finally your cells have enough energy to function better, and then you feel better.

I think, in general, one needs to second guess when they have gut issues that it has to be some bacterial/fungal/microbiome issue etc. It could the above and the cells in your body do not have the energy they need to run properly, including all of the cells comprising your gut and gut immune system. When tissues do not generate enough energy to work correctly then obviously you are going to have problems.

 

PWME do not have genetic mitochondrial diseases. No researcher, no doctor, no patient, no one knows exactly the cellular energy impairments we actually have, and how different or not they are to congenital disorders. I wouldn't go so far to make that extrapolation.

We have no idea. Most PWME do not recover significantly or go into remission spontaneously, I think the figure we constantly see is 5%. So many people try interventions on their own. They reduce the risk somewhat by trying interventions that have some scientific evidence that support it. But in the end it's all a shot in the dark, trial or error approach with all the risks that come with it.

There are a lot of PWME that will tell you, from their own experiences, that fasting significantly improves symptoms and that fasting doesn't cause a rebound worsening or payback. And it's like clockwork, we can essentially prove that the fast is the cause of symptom improvement because it happens every single time right away. When we stop fasting and, for many of us, go back to eating a normal healthy diet with standard macros, our symptoms gradually get worse, PEM ensues, and most of us crash.

 

Absolutely. I'm not discounting the possibilities that you have mentioned and they're always in the back of my mind. I wasn't very clear in my post that I don't think that SIBO or the microbiome is the underlying problem. That was my wishful thinking 3-4 years ago. I think at that time I just couldn't accept ME/CFS diagnosis and the uncertainty that comes with it so had to latch on to something. I'm open to all the possibilities now..

 

I wouldn't make such a blanket statement. Naviaux doesn't know for sure. His paper studied 45 subjects (n = 22 men and 23 women), that's a very, very small study. I know that Fluge/Mella also found some evidence in a much larger cohort but I think we are mixing up the scientific findings and ketogenic diet here.

Both found evidence of reduced mitochondrial fatty acid oxidation in female patients in serum and skeletal muscle cells I believe. Ketone bodies are not fatty acids. Only your liver cells use fatty acid oxidation to make ketone bodies. Naviaux and Fluge/Mella did not study liver cells and if they were affected. They also did not study whether there was impaired ketone oxidation.

As a scientist who also does metabolomics research (in cancer) I can tell you that the field is still quite new and the techniques are still lacking in interlab and interassay reproducibility. So currently for these techniques the need for very large cohorts is paramount. In the experiments I'm doing we typically have more than 1000 patients.

Naviaux would tell you he doesn't know for sure. If a woman with ME truly has fatty acid oxidation pathway impairment in her liver then when trialing a ketogenic diet it most likely won't work and won't work right away.

 

Probably no. I would say a possible theory is that due to the fact that we keep eating carbohydrates like normal and we have a healthy supply of glucose in the blood our bodies do not utilize ketosis in any significant way. If this theory is true, it seems that our cells do not get any signal that they aren't making enough ATP from the glucose mitochondrial pathway.

 

I agree there are severe limitations to his study but if I recall correctly the Norwegians also found that the only useable substrate in women was protein.

My impression is that those who do badly with fasting will be less likely to do well with keto since keto is a modified fast. Some feel better with fasting as you point out so it makes sense to try keto.

I used to be able to do IF; now I cannot fast at all. My energy drops to literally zero. I know many women who have this sort of response.

 

Sorry @Sid I accidentally hit post before I was done. Please re-read my post as it changed.

 

I totally agree. But this post gives a more fair and balanced assessment of the situation, some women will do better with ketogenic and IF intervention, some won't. We can't say that all woman will do badly because honestly we don't know.

 

Indeed.

I will just add that since we have no studies, anecdotally I was doing keto on and off for 10 years (2003-2013) before healthy kids on reddit and such used it to shave off those troublesome 10 lbs and in that time ‘met’ hundreds, maybe thousands of people with various disorders trying it. One woman with ME/CFS benefitted (couldn’t walk around the block previously), a few men. Some got miraculously better initially and relapsed severely as time passed.

As keto has been around for a very long time (100 years ago it was used to stave off death in type I diabetics before discovery of insulin, still used in refractory epilepsy, lots of studies on this now), if it side-stepped the metabolic derangement(s) of ME/CFS we would know about it and everyone would be using it. There is nothing new here, it’s just that every generation reinvents the wheel since no effective treatments are available.

 

@leokitten I'm absolutely not trying to discount what you are saying or trying to scare people not to try this diet.

If some here are not feeling benefits from fasting then at least they can consider that a mitochondrial deficit might be a factor. That's all.

 

@Sid the thing is that ME researchers are, I believe, finding more and more evidence that comes to the conclusion that this is a heterogeneous disorder. That the causes, triggers, and possibly even drivers of the disease are different between patients and though we all end up in pretty much the same place the treatments that will work will vary between patients.

So it completely makes sense that circumventing metabolic impairments works really well in a subgroup and not in another. That's why it's important for people to catalog our experiences when such an intervention works really well. That's also why we cannot make blanket statements that something definitely won't work. There likely will never be a treatment that "we would know about it and everyone would be using it".

Quoting from Ian Lipkin in the recent article from Simon McGrath in ME Research Review:

The heart of ME/CFS? Lipkin’s Collaborative probes the impact of exertion

"He believes that in ME/CFS, as with cancer, a group of similar-looking patients will prove to have different causes or triggers for their illness but will share a final common pathway: “ME/CFS”. As with cancer, he expects they will find the specific cause of ME/CFS for some groups of patients quite quickly – the low-hanging fruit.

On the other hand, Lipkin believes it may prove much harder to find causes for ME/CFS in other patients – the fruit higher up the tree.

Lipkin is aiming for precision medicine, where doctors try to establish each patient’s exact problem so that it can be treated in the most effective way. If for example, the microbiome is abnormal, there are already plausible treatments available, such as probiotics, antibiotics or antivirals that could have a profound impact on illness. Other patients may have abnormalities in immune system or mitochondrial function that will require the development of specific drugs or genetic therapies."

Now look I'm not a fan of Ian Lipkin at all, I think he has a chronic problem of throwing out pretty bombastic statements to give patients hope, like saying "We will solve ME/CFS in the next 3-5 years" which was back in 2015. I believe he cares more about his personal research interests, getting funding, and putting out publications in research areas that are hot topics currently (e.g. microbiome research). It's funny at the end of 2015 he said we'll solve it in 3-5 years, and now in the above article in mid 2018 he's now saying "he also said he was very hopeful that there would be real progress for patients within five years." Oh brother please stop...

But besides that I do believe these statements above about heterogeneity are probably correct, and they aren't just his there have been other high-profile ME researchers who've said the same thing.

Taking from this, and I've thought about it a good deal and do not want to be negative, but if this disease is so heterogeneous and requiring precision medicine approaches to treatments then, pardon my bluntness, this is going to suck and get ready to wait for a very long time. The industry is only really doing precision medicine in cancer and this mostly because the disease is one of the most prevalent diseases humans get combined with one of the most horrendous and lethal.

There are $$billions$$ of dollars of research going into cancer, not $15 million for ME/CFS like in the U.S.. Precision medicine is very expensive, requires way more research, and many more treatments/drugs have to go through the clinical trial and FDA approval process. There isn't just one or a few targets anymore. If people think we are going to have new FDA-approved drugs or other therapies within the next 10 years I have a lot of doubts. If they repurpose existing FDA-approved drugs that might shorten the time, but I think many ME physicians have tried many of these and the results are not enough.

"Patients may have abnormalities in immune system or mitochondrial function that will require the development of specific drugs or genetic therapies." This is going to take 20 years or more unless they seriously start spending $100s of millions of dollars now.

Lipkin mentions probiotics, antibiotics, antivirals for subgroups, but we've tried all these interventions, we've seen the evidence anecdotal and clinical, if they do work they only work in a few, and when they do work most only have improvements but not remission. They cannot go back to a life full of free will. ME effectively robs you of free will. That cannot be said of the majority of other diseases that have FDA-approved treatments, people with other, even very serious illnesses can get back to a fairly normal life when they get treatment.

I would be ecstatic if they have a diagnostic test for this disease within 10 years. That's all I can realistically hope for.

 

https://twitter.com/user/status/1030419253583917056

 

I read about this this morning on the BBC site and there seem to be a lot of caveats about it, which is what you'd expect from an observational study of diet.

But I do think it's important to look at long-term data - that is, over years and decades. One-year follow-up is nothing, for a diet. In practice, though, I doubt we'll ever see very clear studies - it's hard to keep control of people's diets for long periods.

 

Update:

It's been just over two weeks now since I recovered from the crash I had after starting the ketogenic diet (see earlier in this thread). I had transitioned and was on the ketogenic diet for two full weeks before that crash. These two weeks I had more activity than the two weeks before the crash, both mental and physical. I'm working a lot more (although still from home to save energy) and had more days when I went on walks and errands.

I felt better these two weeks than the first two weeks of the diet. The same symptom remissions and significant improvements I listed have continued. The only symptoms blips I had these two weeks were:

1. During a couple of long walks it was really sunny and I forgot my sunglasses. Due to the diet I do not have photosensitivity anymore to warn me, so when I got home the ME "hungover like" deep eyeball pain I've described came back, it lasted the rest of the day and disappeared by the next morning. For all my subsequent walks I took sunglasses and never got the symptoms again.
2. This past Tuesday, I started getting blip of the isolated fatigue symptom I described, which was my only symptom warning sign before the previous crash. To explain in more detail, it's a fraction of the level of crushing ME fatigue I would feel before the diet, but it is still noticeable. After a day or so of it persisting, I started another 48-hr intermittent fast (IF). Within like three hours the symptom quickly vanished. I find this very intriguing, wondering what is happening with my body.

For the first week of this second two week period, I experimented with not tracking my macros with my keto app, just to take it easier after that crash and to see how well I could manage in my head knowing pretty well the food I have at home. Having the glucose+ketone meter to give me accurate feedback on how well I am doing makes this more feasible. I was able to keep a pretty consistent GKI = 2 during this time. As a side observation, I found I feel equally as good on a GKI = 2 versus something lower, so now I have more information going forward.

I wonder does anyone else who improves on IF also find that it is a PEM reliever or even shielder?

 

I see that there are claims that the ketogenic diet also helps with migraines.

Does anyone here have experience of that?

 

My migraines go in waves of clusters, so difficult to say really - but now you mention it, I do seem to have had fewer since starting Low Carb in April.

Note: I’m not always fully keto I think, but I usually fast 16hrs of each 24, and have cut out all bread, rice, pasta, potatoes [whaaaaaa], cereals and only take tiny portions of root veg. I no longer track every morsel.

 

One thing I noticed when I ate a gluten free diet (no bread, pasta, less carbs etc) is that I no longer experienced sick type headaches. They weren't migraines (no aura) but very similar to migraine sickness.

I do the 14-16hr fast overnight almost every day, but when I have the odd "popcorn night" I feel awful the next day.

 

I've had a short break from low-carb when I was on holiday, and I got migraines every day. They've gone again now.

 

Apparently migraines without auras (same here) are the most common type of migraine:

https://www.webmd.com/migraines-headaches/what-is-a-migraine-without-aura#1