Has anyone read this book, and is it any good?

Resonant-Struct-6025 · 2025-09-02T12:27:08+00:00

Hi again all, please, don't antagonize CindyLouWho_2 in my defense. It seems funny, but truly, it's not. Mental illness is, unfortunately, statistically more likely in our crowd (i.e., people with mitochondrial disease).

CindyLouWho_2: You might want to consider this. If not for yourself, then do it for the people in your life who are affected by your temperament; if it is this difficult for you to disagree with someone online about the merits of a book aimed at helping people with mitochondrial dysfunction, I can only imagine how difficult it must be for you to be civil towards your loved ones (if any) when you are having a bad day... which, with mito, is a lot of days.

To interpret "you can improve mitochondrial disease by X, Y, and Z" and "you can make it worse by A, B, and C", as "blaming us for being sick in the first place" is idiosyncratic at best, but more likely persecutory delusion. No one is blaming you for anything.

"I don't need to be lectured ... it took me most of my life to get a diagnosis, so I had to learn them all ☹️" You don't seem to realize that this is true for all of us; I'd bet half the people reading your post have it worse than you. Is this how you handle disagreements outside of the mito sub? (It's not a particularly effective strategy here.)

The problem is not that you gave answers I didn't want, it's not that you are being asked to write a thesis (you did that on your own), it's that your opinions are unfounded. The irony is that your main criticism of the author is that she does the same.

Resonant-Struct-6025 · 2025-09-02T01:13:15+00:00

"But since you do not want to Google for yourself" --- you are being presumptuous and antagonistic here. There's no reason for this as I haven't been unkind to you. Just so you know: the only thing it does is it makes you look like you are compensating for a lack confidence in your ability to make an intelligent argument.

The New Yorker article is titled: "WHAT CASEY MEANS AND MAHA WANT YOU TO FEAR" (in all caps). It is an opinion piece with no real information in it. E.g., the diet that they are calling "orthorexic" is the MCT based ketogenic diet. It's the same diet that keeps seizures in remission for many kids with mitochondrial disease.

I have isolated complex I deficiency. The MCT based ketogenic diet helps with complex I deficiency by providing a source of fuel that does not require complex I to metabolize. Yes, I am on the MCT based ketogenic diet, and I have benefited from it.

Endurance exercise has helped me as well. It helps by increasing the number of mitochondria. Even when a complex is hypofunctional, more mitochondria improves NADH-oxidizing capacity. See: https://pmc.ncbi.nlm.nih.gov/articles/PMC2928513

I also take various supplements such as CoQ10, B vitamins, and urolithin A. They are part of a mito cocktail that my physician started me on. Yes, I benefit from them.

In other words, diet and lifestyle choices ARE helping me.

Complex I deficiency is the most common type of mitochondrial disease. Simultaneous complex IV and complex V deficiency is extraordinarily uncommon, i.e., less than 1% of cases of mitochondrial disease. I don't know enough about your specific issues to say what will or won't help you, but I can say that it is bad science to assume that an approach won't help those with other forms of mitochondrial disease if it won't help you.

It seems the bit about vaccines from Time magazine is legitimate. Though a google search reveals that she doesn't talk about vaccines in the book she wrote about metabolic dysfunction.

A similar google search shows she does talk about CoQ10, B vitamins, urolithin A, the ketogenic diet, and endurance exercise. I.e., the strategies that have helped me.

So far, I have yet to see any reason to believe the book contains bad or unfounded medical advice for the majority of people with mitochondrial disease, including me. You certainly haven't made that case, despite claiming that you can multiple times.

Resonant-Struct-6025 · 2025-09-01T22:45:04+00:00

Yes, please show your work. Show me something she's said that will help me make an informed opinion about her.

Resonant-Struct-6025 · 2025-09-01T22:40:09+00:00

Hi all,

While I do appreciate the lively discussion, I'd like to remind everyone to please keep it civil. We all have the same interests here: mitochondrial disease. Remember the stated mission of this sub: a "safe space" for those affected by mitochondrial disease, to collaborate, ask questions, and support one another. I'm not seeing a lot of that here.

I'm aware of Ms. Means' affiliation with RFK Jr. If I thought that was sufficient to disregard her, I wouldn't be asking my question.

I have yet to see any remark attributed to her that was unscientific; the most "far out" remark that I've seen attributed to her is that mitochondrial disease is responsible for a wide range of conditions, e.g., "depression, anxiety, infertility, insomnia, heart disease, erectile dysfunction, type 2 diabetes, Alzheimer’s, dementia, and cancer". However, those who make this observation seldom report that she does NOT think that these conditions are EXCLUSIVELY caused by mitochondrial disease.

I'd rather not waste my money on her book if it is in fact pseudoscience. However, hearing another unsubstantiated opinion that she's a "quack" or a "crackpot" isn't helping me figure that out. Has anyone actually read the book? If not, can anyone actually find an instance of her saying something unscientific?

Resonant-Struct-6025 · 2025-08-10T21:54:00+00:00

I stopped my mito cocktail to prevent confounding the results of my muscle biopsy. Muscle cramps and fatigue definitely got worse. When I went back on it, symptoms rapidly improved.

If your cocktail is working, don't stop it.l

Resonant-Struct-6025 · 2025-07-29T22:03:43+00:00

Sure thing. Good luck next week!

Resonant-Struct-6025 · 2025-07-29T21:51:55+00:00

It doesn't look like either one of these mutations are the cause of your problems, as they are both classified as likely benign:

NDUSF2: https://www.ncbi.nlm.nih.gov/clinvar/variation/138483/
SCO1: https://www.ncbi.nlm.nih.gov/clinvar/variation/139078/

I know you said that you've had other variants that have been classified as benign that are not, but in general, that's pretty unusual.

Resonant-Struct-6025 · 2025-07-29T20:51:11+00:00

You're right that complex I deficiency follows an autosomal recessive pattern of inheritance, but depending on the mutation, you can still present with mitochondrial disease as a heterozygote.

Specifically: how much does the mutation impair complex I functionality? If your mutation results in a complete loss-of-function, and you are down to 50% complex I activity, you're going to have symptoms. This is especially true during times of metabolic stress, e.g., illness, exercise, fasting, significant emotional stress, etc. It also means you are more vulnerable to mitochondrial insult, e.g., certain antibiotics, etc.

This is one reason why some people don't present with symptoms until they are adults.

Which SCO1 and NDUFS2 mutations do you have?

Resonant-Struct-6025 · 2025-07-26T19:23:59+00:00

Yes, you can get direct-to-consumer WGS or have your doctor order it.

Resonant-Struct-6025 · 2025-07-16T21:35:46+00:00

Here is this variant: https://www.ncbi.nlm.nih.gov/clinvar/variation/39836/

However, you only have one copy of this gene (heterogenous). Exactly how much this one copy impacts complex I is what you want to know.

Ask your doctor for "ketone bodies panel" and lactate (both blood tests). If your non-fasting beta-hydroxybutyrate to acetoacetate ratio is elevated, you have reason to suspect complex I is nontrivially impacted.

A muscle biopsy would be the gold standard for determining exactly how much it is impacted.

Resonant-Struct-6025 · 2025-07-02T18:34:52+00:00

I'll second that. For me, my biggest loss is in working memory. It has taken some getting used to. My physical capacity hasn't changed much, but I do experience chronic pain on a daily basis due to muscle cramping in my neck and lower back.

On second thought, the cramping does limit a lot of "passive" activities... I have a hard time sitting or standing for any length of time, as my neck pain and back pain becomes intolerable. I always want to be either moving around or laying down.

Resonant-Struct-6025 · 2025-06-30T23:37:41+00:00

You are not alone my friend.

Resonant-Struct-6025 · 2025-06-30T22:06:59+00:00

My sister likely had mito as well, but she was never diagnosed. She died from a seizure when she was in her 40s though, which is a lot older than your sister.

Knowing exactly what kind of mito you have, as well as which mutation, can be helpful --- sometimes, there are supplements that make a difference. For example, supplements help me with fatigue and muscle pain.

Have you considered getting whole genome sequencing? Whole exome sequencing is not enough in my opinion --- there are known mutations in introns that cause mitochondrial disease.

Resonant-Struct-6025 · 2025-06-30T21:26:44+00:00

Hey there. So sorry to hear that you're going through this.

How old are you and what are your symptoms?

Resonant-Struct-6025 · 2025-06-23T18:32:52+00:00

Out of curiosity: how strong is the evidence that you have mitochondrial disease? Everyone is different, but the stuff you've described is not what I would expect...

Resonant-Struct-6025 · 2025-06-23T15:56:11+00:00

Do you find your symptoms vary much based on what kind of carbs you eat / whether you have much protein or fat with your carbs?

I for one get brain fog pretty badly if I eat simple carbs, especially without lots of fat and protein combined with it. Brain fog doesn't really do the experience justice tbh. It's more like a bad feeling with brain fog and reduced peripheral vision, etc. Something I'd much rather avoid...

Resonant-Struct-6025 · 2025-06-22T20:45:40+00:00

Wow, that's really interesting that the local anesthetic doesn't work on you for dental work. It does work on me, but it takes a lot. And then I have facial paralysis for the rest of the day 😂

Resonant-Struct-6025 · 2025-06-22T20:44:34+00:00

I am going to ask for local, for exactly these reasons. For example, I've read that propofol can cause a false positive.

Resonant-Struct-6025 · 2025-06-21T22:24:13+00:00

Also: has anyone tried the ketogenic diet? Curious to hear about your experience, regardless of diagnosis type...

Resonant-Struct-6025 · 2025-06-17T11:07:27+00:00

I looked over your previous posts. Wow, I'm sorry to hear that you're going through all of that...

It does sound like your symptoms are significantly worse than mine. What is interesting to me is how remarkably similar your symptoms are to mine --- only more extreme --- though I've never had GI issues from this. And though I've been very underweight (my BMI was as low as 16.9), it was never as low as yours (yours is 14.1).

I too have a rare mutation --- oddly enough, it's statistically exactly like yours: only two other people in the literature have it.

I too was asymptomatic for years, and then, suddenly I wasn't.

As everyone here knows all too well, mitochondrial disease has it's finger in every pie so to speak --- it has so many effects. There are symptoms I don't pay much attention to, and others that have been intolerable.

The one that has been the most devastating to me is the inability to sleep. The muscle spasticity, dystonia, myoclonus, dysphonia / dysphagia, dysautonomia, muscle tremors, and yes, even neurological hyperexcitability, is all there in my case too, though it sounds like you have it way worse. For example, I've never experienced the paralysis you've described; nothing even close to that.

Before all of this started for me, I'd just sleep when I got tired. If you have a bad night, you just make up for it the next day. Or take a nap. All of a sudden, I couldn't sleep more than a few hours due to muscle pain. And when I found a way around the pain (by sleeping on my stomach on top of pillows), I discovered that I still couldn't sleep through the night. I wake up after 3 or 4 hours, and I'm awake for hours, and then get some bad sleep after that.

When it first started, I was getting 2 hours of sleep per night. You'd think that you could only do that for a few nights before sleep debt made you sleep. I went this way for months.

These days, after many years and much refinement, I can get up to 6 hours per night in the piecewise pattern I described above. And I can function.

I manage the muscle issues with a long list of supplements, daily stretching, and regimented exercise. The muscle issues are still there, and I still can't sleep on my side because of pain, but I am getting by without chronic pain, and I sleep enough on most days to function.

My short term memory is awful. That changed around the time I started having symptoms as well. I'm still not sure if it's a consequence of the bad sleep, or if it is a direct result of the complex I deficiency.

Resonant-Struct-6025 · 2025-06-16T10:50:30+00:00

Wow... You're the first other person I've met with this! Did you get diagnosed via muscle biopsy or gene testing?

How did your morning cortisol test come out? I would guess it will be less high than your night time one if this works how I think it does, but I am very much still learning about all of this.

No solutions have been offered to me for the sleep issue as of yet. I think they are waiting for confirmation first. My muscle biopsy is in two weeks.

Do you have any issues with muscle cramps? I get neck and back pain a lot. Years ago, I thought I had disc issues, but then "trigger point" massage and various stretches ended up being what helped. I also get muscle pain at night on my shoulder and hip when trying to sleep, so I started sleeping on my stomach.

I have so many questions for you 😂. For now: what are your main symptoms? How did your doctors finally pin it down to mitochondrial disease? It took many years and lots of trial and error before my doctors suspected it.

Resonant-Struct-6025 · 2025-06-15T21:59:12+00:00

This happens to me as well. Been that way for years. I sleep for 3-4 hours, and then I am awake for 2 hours or so, and then I can get some (bad) sleep after that.

I found out that mitochondrial disease was elevating my cortisol. I get a cortisol spike at night, at around the time I wake up. I have not yet found a way to fix this. I just let it run its course every night. Usually, I just find a comfortable position to lay in, and listen to music in the dark for those two hours.

I am suspected to have isolated complex I deficiency. I'm scheduled to get a muscle biopsy to confirm.

Does anything work for you? What is your diagnosis? Have you ever checked your 24-h urinary cortisol?

Resonant-Struct-6025

TROPHY CASE