Mitochondrial and Energy Metabolism Dysfunction in ME/CFS — Myhill, Booth and McLaren-Howard Papers

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I want to retell my experience and understanding.
Yes, there is a strange global spasm of skeletal muscle, intestinal muscles, blood vessels ....

The pressure chamber, pentoxifylline, arginine preparations do not work.

Medicines working with calcium channels - nimodipine works great with cramping. Especially with spasms of the brain which manifests itself in head fog and numbness of the extremities.

The connection between mitochondria and ion channels is very interesting in terms of therapy.

Thyroid medications, ubiquinone, nicotinamide, a keto diet help fight symptoms of calcium channel dysfunction or Post-exertional malaise ...

The controllability of ion channels, the production of cortisol, the functionality of the immune system depends on the state of mitochondria ????
 
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bertiedog

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I did terrible on the type of Keto diet that Myhill recommends, it caused me a huge crash which took months to get out of.

I believe it is because I have adrenal insufficiency a milder form of which might be a problem for many others with ME/CFS because of under functioning adrenals. I am so much better on a slightly higher amount of carbs but still would be considered low carb.

Pam
 
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It seems to me that not low cortisol is a function of something. But this is not an independent failure.

At the beginning of the keto diet, I felt a significant increase in energy.
In the middle of the second month, a significant failure, first as a cold, then as a complete lack of strength ...
@Hip
 

wastwater

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Parp-1 is a new one of interest to me
Quote ). When FOXC1 was knocked down, there was a significant increase in cleaved PARP-1 protein levels after exposure to both ‘low dose' and ‘high dose' oxidative stress conditions.
 
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I've been on some of Dr Myhill's supplements for a while, and have seen a benefit but not by introducing them all at once, and not by having an ultra-low keto diet as suggested, but a more plant based low-carb diet (I still eat meat and fish) along with digestive enzymes that have helped.

Has anyone had toxicity issues when on the Myhill protocol though? I have been taking high doses of vit C in the form of magnesium ascorbate (around 4-5g per day, more when feeling an infection come on) and 5,000iu of vit D3 (now 4,000iu because it's easier to get hold of). I have had a kidney infection in the past few weeks, and despite antibiotics my sore back symptoms and difficulty passing urine remain - I'm worried that I've overdosed on vit C and D and that this has resulted in these problems, as I've heard both can impact kidney function at higher doses. Anyone had a similar experience?
 

boolybooly

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I am a patient of Dr Myhill and have taken her advice in trying to manage my ME CFIDS.

I cant take high doses of Magnesium ascorbate because it gives me the squits. But I take a few grams of Sodium ascorbate daily in my drinks and its fine. I also take zinc and multivitamins with minerals and extra B vits and sometimes Myhills minerals mix.

I also cannot tolerate high doses of VitD, it tends to cause strange cutting pains in my head. I find I need more calcium if I go out in the sun (which makes vitD) and this manifests in a tendency to muscle cramps.

I also tried strict carb restriction using ketostix to monitor and was very deepest purple for a couple of months, but felt so unwell after two months in a steady state rather than improving state as other people without ME report when going keto, so I added limited carbs and felt much better, which sounds like what other ME people have said. I have tried cassava as a staple which seems OK but I keep rice and wheat flour based food to a very low minimum (as my gut tends to hold on to rich carbs making IBS worse) and avoid white sugar and am still fairly carb restricted with high lipid as too much carb isnt good either as it makes me feel fairly rough generally.

I have found I do well with herbal treatments and regularly take a tea with Bucchu as a urinary antiseptic, Marigold as an immune supporter, Hops as a mild tranquiliser. I also find Cramp Bark tincture can sometimes help with muscle pain.

I dont know if this applies to anyone else but I have had to give up nightshade vegetables as I seem to react immunologically to them; also dairy and palm oil and coconut oil because medium chain triglycerides seem to make my allergies and inflammation worse.
 

Wishful

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I dont know if this applies to anyone else but I have had to give up nightshade vegetables as I seem to react immunologically to them; also dairy and palm oil and coconut oil because medium chain triglycerides seem to make my allergies and inflammation worse.
I don't think I had any direct immune system effects from these, but nightshades did make my symptoms worse, and coconut oil did too. No problems with dairy.
 
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I am a patient of Dr Myhill and have taken her advice in trying to manage my ME CFIDS.

I cant take high doses of Magnesium ascorbate because it gives me the squits. But I take a few grams of Sodium ascorbate daily in my drinks and its fine. I also take zinc and multivitamins with minerals and extra B vits and sometimes Myhills minerals mix.

I also cannot tolerate high doses of VitD, it tends to cause strange cutting pains in my head. I find I need more calcium if I go out in the sun (which makes vitD) and this manifests in a tendency to muscle cramps.

I also tried strict carb restriction using ketostix to monitor and was very deepest purple for a couple of months, but felt so unwell after two months in a steady state rather than improving state as other people without ME report when going keto, so I added limited carbs and felt much better, which sounds like what other ME people have said. I have tried cassava as a staple which seems OK but I keep rice and wheat flour based food to a very low minimum (as my gut tends to hold on to rich carbs making IBS worse) and avoid white sugar and am still fairly carb restricted with high lipid as too much carb isnt good either as it makes me feel fairly rough generally.

I have found I do well with herbal treatments and regularly take a tea with Bucchu as a urinary antiseptic, Marigold as an immune supporter, Hops as a mild tranquiliser. I also find Cramp Bark tincture can sometimes help with muscle pain.

I dont know if this applies to anyone else but I have had to give up nightshade vegetables as I seem to react immunologically to them; also dairy and palm oil and coconut oil because medium chain triglycerides seem to make my allergies and inflammation worse.
Thanks very much for all the info 🙂 I'm worried I've developed kidney stones on the low carb diet, or perhaps my type of vit C (magnesium ascorbate)..? Anyone else had this experience on the Myhill protocol?
 

boolybooly

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Vitamin D enhances humoral immunity. Or, simply, increasing antibody production.
Which may be problematic if one is struggling with autoimmune reactions or food intolerance cross reactions, as I suspect may be true in my own case, evident in migrating symmetrical joint pain over many years and inflammation and mouth ulcers from alkaloid foods. In such a situation a tolerable balance is optimal.
 

bertiedog

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also cannot tolerate high doses of VitD
From my recent experience with insomnia it would seem that it is a good thing NOT to take high dose vitamin D because it can interfere in the production of melatonin.

It doesn't take much to throw my sleep off but my body soon lets me know if a supplement is negatively affecting me and I had this 3 nights running the past week. I couldn't at first work it out till I did some Google searches and this is where the info about high dose Vitamin D messing with the production of melatonin. I had been adding 2 or 3000 daily for a week or more but in addition we are at the end of a warm quite sunny summer here in England, UK so it is highly likely that my vitamin D level is good anyway as I spend quite a lot of time outside.

I don't fully know yet if this is what was causing it but yesterday I didn't take any and I slept for nearly 8 hours, something that never happens to me, its more like 7 hours maximum. I was absolutely exhausted though because of the prior night's lack of sleep.

Pam
 

Wishful

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I think it would be possible to have badly malfunctioning mitochondria that produce 'normal' levels of lactate, so I wouldn't put that as a definitive measurement. You can't measure a car's functioning by just checking the oil level. A proper test for mitochondrial function would involve multiple factors under varying conditions. Kind of hard to measure directly too, since they're tiny cells within cells.
 

grapes

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The research of Myhill, Booth and McLaren-Howard on defective energy production in ME/CFS has not been covered in any great depth on these forums, particularly not on the theory side. Hopefully we can rectify that in this thread.
Well Hip and all, I'm three years late in reading this (and 2016 was the first year I started having PEM crashing), but boy does it fit me. I had NO idea that the length of time that it takes me to recover was due to the remaking of ATP. My husband is currently rushing out for d-ribose.

Something interesting about me: I did a stool test two months ago, and there was an intermediate amount of carbs in my stools. That is not a good sign for energy production and I wonder if this may be true of other PEM sufferers.

When I looked at the five energy processes, the one that stood out was (3) Oxidative Phosphorylation = efficiency of oxidative phosphorylation and Group A. i.e. "cellular metabolism uses increased anaerobic glycolysis to partially compensate for the overall energy metabolism dysfunction". Plus this REALLY fits: "Group A patients will suffer from increased acidosis due to build-up of H+ ions from ATP hydrolysis which are not recycled by the ETC, and will also exhibit excess lactate in the blood." I've always noticed excess lactic acid in me for years (which I thought was due to my mitral valve prolapse), but it's especially bad when I fall into a PEM crash.

Also this: "Note that co-enzyme Q10 is a vital factor in oxidative phosphorylation, and deficiency in Q10 may cause oxidative phosphorylation to go slow." When I did a detox, then a second one, for high heavy metals, I I had debilitating fatigue--far worse than anyone else I knew who was detoxing. So I got on high dose CoQ10 (ubiquinol)...around 3000 mg, and it make a huge difference. And right now, high dose ubiquinol is also helping a bit.
 

Hip

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I had NO idea that the length of time that it takes me to recover was due to the remaking of ATP. My husband is currently rushing out for d-ribose.
It's only a theory that PEM is due to depletion of ATP molecules, but certainly a very interesting one. I hope the D-ribose helps.

If you have not read it already, you might like this post about the difference between the Group A and Group B patients. And this post talks more about the way ATP molecules are lost during exertion, and the lactic acid involvement in PEM.
 

grapes

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It's only a theory that PEM is due to depletion of ATP molecules, but certainly a very interesting one. I hope the D-ribose helps.
Hip, are you aware if there is a way to test the five energy processes in the US?

I've been on D-ribose (5000 mg times 3/day) for two days, and something has helped during the day (CoQ10? D-Ribose?) but I crashed tonite in the evening again with noticeable extra lactic acid--wish I knew why. My days are fairly sedentary right now. I have also been on good amounts of potassium 1 1/2 days now after the hard palps episode. Palps went away.

Just now heading to read the two posts you sent me to.
 

Hip

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Hip, are you aware if there is a way to test the five energy processes in the US?
I know that some people in the US got the Acumen Lab test done, so there may be doctors in the US who send blood samples to Acumen. Though have you seen the new study published recently that could not reproduce Acumen results (I linked to this at the top of the first post in this thread).
 

grapes

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I know that some people in the US got the Acumen Lab test done, so there may be doctors in the US who send blood samples to Acumen. Though have you seen the new study published recently that could not reproduce Acumen results (I linked to this at the top of the first post in this thread).
Ah. "A replication study examining the validity of the Mitochondrial Energy Score (MES) blood testing protocol used by Acumen labs found no difference between ME/CFS patients and healthy controls."

So if I'm reading that correctly, it's useless.